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Experimental evaluation of a new intervention designed to promote dementia caregivers' acceptance and empathic responding towards care -recipients

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Experimental evaluation of a new intervention designed to promote dementia caregivers' acceptance and empathic responding towards care -recipients

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Content INFORMATION TO USERS This manuscript has been reproduced from the microfilm master. U M I films the text directly from the original or copy submitted. Thus, some thesis and dissertation copies are in typewriter face, while others may be from any type of computer printer. The quality of this reproduction is dependent upon the quality of the copy submitted. Broken or indistinct print, colored or poor quality illustrations and photographs, print bleedthrough, substandard margins, and improper alignment can adversely affect reproduction. In the unlikely event that the author did not send U M I a complete manuscript and there are missing pages, these will be noted. Also, if unauthorized copyright material had to be removed, a note will indicate the deletion. Oversize materials (e.g., maps, drawings, charts) are reproduced by sectioning the original, beginning at the upper left-hand comer and continuing from left to right in equal sections with small overlaps. Photographs included in the original manuscript have been reproduced xerographically in this copy. Higher quality 6" x 9” black and white photographic prints are available for any photographs or illustrations appearing in this copy for an additional charge. Contact UM I directly to order. ProQuest Information and Learning 300 North Zeeb Road. Ann Arbor, M l 48106-1346 USA 800-521-0600 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. EXPERIMENTAL EVALUATION OF A NEW INTERVENTION DESIGNED TO PROMOTE DEMENTIA CAREGIVERS’ ACCEPTANCE AND EM PATfflC RESPONDING TOWARDS CARE-RECIPIENTS Copyright 2000 by Julia Elizabeth Kasl-Godley A Dissertation Presented to the FACULTY OF THE GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment o f the Requirements for the Degree DOCTOR OF PHILOSOPHY (Psychology) May, 2000 Julia Elizabeth Kasl-Godley Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. UMI Num ber 3037897 _ _ _ _ _ < s > UMI UMI Microform 3037897 Copyright 2002 by ProQuest Information and Learning Company. All rights reserved. This microform edition is protected against unauthorized copying under Title 17, United States Code. ProQuest Information and Learning Company 300 North Zeeb Road P.O. Box 1346 Ann Arbor, Ml 48106-1346 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. UNIVERSITY OF SOUTHERN CALIFORNIA TH E GRADUATE SCHOOL UNIVERSITY PARK LOS ANGELES. CALIFORNIA 9 U0 0 7 This dissertation, written by Julia Elizabeth Kasl-Godley under the direction of k Dissertation Committee, and approved by all its members, has been presented to and accepted by The Graduate School, in partial fulfillment of re quirements for the degree of DOCTOR OF PHILOSOPHY Dam of Graduate Studies April 7, 2000 DISSERTATION COM M ITTEE Chairperson Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. ACKNOWLEDGEMENTS This effort would not have been possible without the support and encouragement o f m any people. First and forem ost, I wish to thank the participating caregivers, the support group facilitators and the staff at the hosting sites. W ithout their commitment and dedication, this project could never have been completed. I wish to thank my dissertation committee for their tim e, guidance and critical reflection: D r.’s M itchell Earleywine, Victor Henderson, Bob Knight and Teresa Seeman. It is w ith great pride that I also thank my advisor and m entor, Dr. Margaret Gatz. H er intellectual rigor and generosity in extending research and w riting opportunities to her students created an environm ent that fostered m y developm ent as a clinical scientist and enabled m e to pursue m y own program o f research. I also wish to acknowledge m y research lab for their support, practical assistance and constructive and thoughtful feedback. Finally, I w ish to thank my family: my husband, Mark; my parents, Elizabeth and Stanislav; and m y brother, Jan. I always w ill be grateful for the gift they gave m e in their unfailing understanding, patience, encouragement and willingness to give o f them selves. Thank you. J.E. K-G. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. iii TABLE OF CONTENTS Page ACKNOWLEDGEMENTS........................................................................................................ii LIST OF TABLES.................................................................................................................... vii LIST OF FIGURES.................................................................................................................... ix ABSTRACT................................................................................................................................. x INTRODUCTION........................................................................................................................1 REVIEW OF LITERATURE.................................................................................................... 5 Interpersonal Stressors in the Caregiver-Care-Recipient Relationship, Caregiver Reactions and Mental Health Outcomes..............................6 Understanding the needs o f the care-recipient and skills for responding to those needs.......................................................................... 9 Caregiver attributions o f care-recipient behavior: the role o f quality o f pre-morbid relationship and relationship orientation......................................................................................................... 10 Relationship-Focused Coping as a Model for Coping with Interpersonal Stressors and the Relative Importance o f Em pathy........................... 15 Relationship-focused coping........................................................................... 15 Empathy as a relationship-focused coping strategy...................................... 17 Factors Affecting Em pathy.......................................................................................... 21 Domain Specificity in C oping......................................................................................25 Approaches for Teaching Empathy.............................................................................29 Didactic-experiential........................................................................................29 Interpersonal skills training.............................................................................30 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. IV Helping skills program s.................................................................................... 32 Empirical Investigation o f Em pathy Training Program s.......................................... 36 An Empathic Coping Intervention: M eeting an Existing Need.................................36 Rationale for the Present S tudy................................................................................... 37 Research questions......................................................................................................... 38 EXPERIMENTAL DESIGN AND M ETH O D S................................................................... 43 Experimental D esign......................................................................................................43 M ethods...........................................................................................................................43 Procedures...................................................................................................................... 43 Recruitm ent........................................................................................................43 Data collection.................................................................................................. 46 Respondents.......................................................................................................46 Sociodemographic characteristics o f caregivers enrolled in the study......................................................................................................... 49 Total sample at baseline......................................................................49 Caregivers not completing the study..................................................56 Caregivers not completing the study vs. caregivers completing the study .......................................................................... 57 Caregivers completing the study........................................................ 64 Interventions................................................................................................................... 73 Settings...............................................................................................................73 Composition, structure and form at................................................................. 73 Treatment fidelity checks (A dherence).................................................. 74 Intervention program for the Empathic Coping g roup.................................76 Rationale for structure and form at..................................................... 76 Description o f content......................................................................... 77 M easures.........................................................................................................................85 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. V Analysis Strategy.......................................................................................................... 102 RESU LTS.................................................................................................................................. 105 Effects o f A ttrition....................................................................................................... 105 Selection B ias.................................................................................................. 105 Pow er ..............................................................................................................109 Effects o f Non-randomization.....................................................................................109 Analysis o f Covariance (ANCOVA): Comparability o f intervention groups after controlling for kin relationship.......................... I l l Independent-samples t tests: Comparability o f intervention groups within kin relationship..................................................114 Pearson Product-mom ent C orrelations..................................................................... 117 Pre-Post Analyses for Empathic Coping and Information/Support G roups........................................................................................................................... 120 M ANOVAs......................................................................................................121 Repeated measures ANOVAs....................................................................... 125 Paired-samples t T ests....................................................................................132 W ilcoxon M atched Pairs Signed-Ranks T est...............................................140 Empathic Coping at Baseline...................................................................................... 142 M ultiple regression......................................................................................... 143 Treatm ent A dherence.................................................................................................. 146 Qualitative Observations o f Factors Affecting Implementation and Im pact o f Empathic Coping Intervention..................................................................150 D ISCUSSION ........................................................................................................................... 152 Empathic Coping Intervention: Achieving Desired E ffects?.................................. 153 Inform ation/Support Intervention: Achieving Desired E ffects?.............................157 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Empathic Coping vs. Information/Support Group Interventions: Differential E ffects?...........................................................................157 Caregiver com petence...................................................................................159 Kin relationship..............................................................................................161 Generalization o f Coping............................................................................................162 Inform ation/Support......................................................................................162 Empathic Coping........................................................................................... 162 Comparisons among Adult Children: Consideration o f Baseline Differences................................................................................................................... 164 Predictors o f Empathic Coping at Baseline..............................................................169 Limitations o f the Present Study............................................................................... 172 Future D irections........................................................................................................176 REFERENCES.........................................................................................................................179 APPENDIX.................................................................................................................................... A Facilitator Behavior Checklist.....................................................................................195 B Empathic Coping Intervention................................................................................... 198 C M easures.......................................................................................................................298 D Correlation M atrix .....................................................................................................336 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. vii LIST OF TABLES Page TABLE 1 Study hypotheses..............................................................................................................40 2A Sociodemographic characteristics o f caregivers for entire sample by group assignm ent..............................................................................................................50 2B Sociodemographics characteristics o f care-recipients for entire sample by group assignm ent............................................................................................53 3 A Sociodemographics characteristics o f caregivers for entire sample by dropout status................................................................................................................... 58 3B Sociodemographics characteristics o f care-recipients for entire sample by dropout status................................................................................................. 61 4A Across group comparison o f adult child and spouse caregivers: C om pleters........................................................................................................................66 4B Across group comparison o f care-recipients o f adult child and spouse caregivers: Com pleters.....................................................................................................69 5 M easures............................................................................................................................ 86 6 Means and standard deviations for pre-test measures: Entire sample by group assignm ent.......................................................................................................106 7 Means and standard deviations for pre-test measures: Entire sample by dropout statu s............................................................................................................ 108 8 Summary table for analyses o f covariance (ANCOVA) for pretest measures...........................................................................................................................112 9 Means and standard deviations for pre-test measures: Adult children and spouse com pleters................................................................................................... 115 10 Doubly multivariate repeated measures analyses o f variance (M ANOVA)....................................................................................................................122 11A Summary table for repeated measures ANOVA: Adult children............................... 127 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. viii 1 IB Summary table for repeated measures ANOVA: Spouses......................................... 130 12A Means and standard deviations for pre-test and post-test measures: Adult children...................................................................................................................128 12B Means and standard deviations for pre-test and post-test measures: Spouse...............................................................................................................................131 13A Mean difference scores and standard error for paired-samples t tests: Empathic Coping g ro u p ................................................................................................. 133 13B Mean difference scores and standard error for paired-samples t tests: Information/Support g ro u p ............................................................................................137 14 Multiple regression for empathic coping at p re-test....................................................145 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. ix LIST OF FIGURES Page FIGURE 1 Schematic representation o f interrelationship amongst variables.................................. 89 2 Mean ratings for facilitator behavior checklist .............................................................. 147 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. ABSTRACT EXPERIMENTAL EVALUATION OF A NEW INTERVENTION DESIGNED TO PROMOTE DEMENTIA CAREGIVERS’ ACCEPTANCE AND EMPATHIC RESPONDING TOWARDS CARE-RECIPIENTS Julia Kasl-Godley This study evaluated the effectiveness o f a psychoeducational program (Empathic Coping) designed to increase dementia caregivers' understanding and acceptance o f the care-recipient with the goal o f improvement in the quality o f the interaction between the caregiver and recipient. This new approach was hypothesized to be superior to traditional Information/Support groups in reducing caregiver-care-recipient relationship problems. A quasi-experimental, pre- post-test design was used. The Empathic Coping groups taught caregivers how to be more accepting and empathic towards the care-recipient as a way to cope with stress in this relationship. Groups met consecutively for 1 Vt hours, twice a month, for a total o f eight sessions. The Empathic Coping group was compared to the first 8 sessions o f typical biweekly Information/Support groups, whose focus was providing practical information and advice about how to cope with general stresses o f caregiving and facilitating emotional support among participants. Sixty-one caregivers, predominantly adult children and spouses, enrolled, and fourty-eight completed the study. Areas assessed included caregiver empathy, coping, satisfaction and competence with caregiving, strain in interpersonal relationships due to caregiving, mental health, quality o f premorbid relationship with care-recipient and orientation towards relationships. Results Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. xi varied by kin relationship and, to some extent, ethnicity, though the tw o tended to be confounded by group. Among adult children, over three quarters o f the Inform ation/Support group was African American whereas only one third o f the Empathic Coping group was African American. Findings indicate that adult children in the Empathic Coping group demonstrated increased acceptance, instrumental and intrapsychic coping with stress in the relationship with the care-recipient; increased perceived competence with caregiving; increased instrumental coping with stress from social activities, and decreased psychological distress. Adult child caregivers in the Inform ation/Support groups showed increased perceived competence with caregiving and increased instrum ental coping with stress in the relationship, but decreased caregiving satisfaction. Spouses in both conditions dem onstrated minor change, but did show increases on a m easure o f loss o f shared goals. Implications for the design o f caregiver interventions to facilitate dyadic coping with changing relations between the caregiver and care-recipient and the role o f kin relationship and ethnicity are explored. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. INTRODUCTION 1 Dementia, and the concomitant changes in cognitive, interpersonal and psychological functioning, is a source o f chronic stress for both the individuals afflicted with the disease (LaBarge, Rosenman, Leavitt & Cristiani, 1988; LaBarge & Trtanj, 199S) and the family members involved in their care (e.g. Pearlin, Mullan, Semple & SkafF, 1990; Zarit & Zarit, 1986). This stress is associated with a range o f negative physical and mental health outcomes for both the caregiver and the demented care-recipient (e.g., for reviews, see Gallant & Connell, 1998; Midence & Cunliffe, 1996; Schulz, O ’Brien, Bookwala & Fleissner, 199S). M ost psychosocial interventions designed to reduce these negative outcomes focus on helping the caregiver and/or the demented care-recipient cope with the impact o f the disease. Two o f the most common forms o f psychosocial intervention programs for caregivers are information/support groups and skills training groups. Information/Support groups seek to increase caregiver coping through information dissemination, problem solving, sharing o f common feelings and experiences and, social support. Skills training groups seek to increase caregiver problem-solving and skills in managing care-recipient behavior through didactic instruction, role-playing and corrective feedback. (For a good review o f caregiver interventions, see Bourgeois, Schulz, & Burgio, 1996). Rarely is management o f the changing relations between the caregiver and the care-recipient a specific target in these approaches (See Corbeil, Quayhagen, & Quayhagen, 1999 for an exception). However, the ways in which the caregiver and care-recipient relate to and interact with one another is changing continually, creating a potential source o f chronic interpersonal stress that affects the well-being o f the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 caregiver, the care-recipient and their relationship. Furthermore, standard approaches give little or no attention to the ways in which coping and adaptation o f both the caregiver and care-recipient are interdependent. An intervention approach that explicitly addresses coping with the changing relationship between the caregiver and care-recipient is needed. One approach for managing the changing relations between the caregiver and care-recipient is teaching caregivers ways o f interacting with the demented care-recipient that facilitate care- recipient coping and adaptation. The assumption underlying this approach is that facilitation o f care-recipient coping will reduce care-recipient distress and thus, behavioral manifestations o f distress. I f the care-recipient is less distressed and shows fewer behavioral manifestations o f distress (i.e. problem behaviors), interactions with the caregiver will improve and strain in the relationship will be reduced, as will the associated negative mental health outcomes in both the caregiver and care-recipient. Thus, by reducing care-recipient distress, the caregiver is able to cope better with ongoing relationship demands. Furthermore, teaching caregivers ways o f interacting with the care- recipient that facilitate care-recipient adaptation provide the caregiver with an alternative way o f framing the situation; that is, that the care-recipient is not so much someone who must be managed o r acted upon but rather, understood; in the process o f experiencing increased understanding, the caregiver increases capacity to alter interactions with the care-recipient and assuage relationship strain. A primary vehicle for promoting understanding is building capacity in the caregiver to be empathic towards the care-recipient. Empathic responding involves identification Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 with and understanding o f the thoughts and feelings o f another person and communication o f this understanding to the person. The rationale for teaching caregivers how to be more empathic tow ards the care-recipient is that by increasing caregiver understanding o f the needs, challenges, and struggles o f the care-recipient, caregivers will be able to respond more appropriately to the care-recipient. This more appropriate responding will support care-recipient coping and minimize the care-recipient’s distress rather than compound it. As a result, interactions between the care-recipient and the caregiver become less strained, resulting in reduced distress in the caregiver. Despite the potential usefulness o f empathy as a strategy to reduce interpersonal stress in the caregiver-care-recipient relationship and thereby reduce negative mental health outcomes, empathy training as an intervention for caregivers has not been studied. The purpose o f the present study is to explore the effectiveness o f a new intervention approach aimed at increasing dementia caregivers’ empathy for the persons for whom they are caring (Empathic Coping group). Although the goal o f the intervention is to facilitate caregiver and care-recipient coping with the disease and associated relationship strain and stress, the caregiver is considered the primary target for the intervention. The caregiver is considered the primary target because o f the care-recipient’s reduced capacities to engage in strategies that are typically used to manage interpersonal relationships, such as actively initiating and engaging the caregiver in discussions, negotiation and compromise. This Empathic Coping intervention was compared to standard Information/Support groups. Information/Support groups were chosen as the comparison group because they are the standard treatment provided for caregivers. The primary focus Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 4 o f the Empathic Coping group is to teach caregivers how to better manage their own emotional reactions tow ards the care-recipient and to be more empathic towards the care- recipient as a way to cope with stress in their relationship with the care-recipient. The primary focus o f Inform ation/Support groups is to provide practical information and advice about how to cope with the more general stresses o f caregiving. A quasi-experimental, pre-test post-test comparison group design was used to answer the question o f differential change between the Empathic Coping and Information/Support groups in specific domains; that is, the Empathic Coping group was expected to be better than the standard Information/Support group fo r managing stress in the relationship with the care-recipient. However, the Inform ation/Support group was expected to do better than the Empathic Coping group for caregiving issues not specific to the relationship with the care-recipient because these issues were not addressed specifically in the Empathic Coping group. Thus, the between group comparison was not used to evaluate the question o f whether the Empathic Coping Group was globally better than the Information/Support group but rather, to evaluate the question o f whether the Empathic Coping group was better for managing stress in the relationship with the care- recipient. Seven areas o f literature informed the conceptualization and design o f the intervention. Four o f these areas develop the basic rationale for the Empathic Coping intervention for caregivers. These areas are (1) interpersonal stressors in the caregiver- care-recipient relationship, caregiver reactions and associated mental health outcomes; (2) relationship-focused coping as a model for coping with interpersonal stressors and the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 5 relative importance o f empathy as a relationship-focused coping strategy for dementia caregivers; (3) factors affecting empathy and (4) domain specificity o f coping. Two additional areas o f literature inform the structure and content o f the Empathic Coping intervention and dem onstrate the effectiveness o f similar approaches with other populations. These areas are: (5) approaches for teaching empathy, developed largely for student counselors and (6) empirical studies o f empathy training programs used with both helping professionals and lay populations. The seventh area o f literature documents caregivers’ expressed need for help in managing their relationship with the care-recipient, and establishes the way in which the Empathic Coping intervention meets an existing need among caregivers to manage their relationship with the care-recipient. REVIEW OF LITERATURE The first o f the four areas o f literature that develop the rationale for the Empathic Coping intervention describes interpersonal stressors and caregiver reactions to these stressors. The stressors examined in this section are specific changes in the relationship between the caregiver and care-recipient, the ways in which caregivers react to and cope with these changes and factors that influence caregiver reactions. Factors that influence caregiver reactions are degree o f understanding o f the care-recipient’s needs, skills for effectively responding to those needs and attributions about the care-recipient’s behavior. Finally, quality o f premorbid relationship with the care-recipient and orientation towards relationships are discussed as factors that influence caregiver attributions about the care- recipient’s behavior. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 6 Interpersonal Stressors in the Caregiver-Care-Recipient Relationship. Caregiver Reactions and Associated Mental Health Outcomes Dementia affects the nature and manner o f relating between the caregiver and care- recipient creating chronic interpersonal stress (Farran, Keane-Hagerty, S alio way, Kupferer, & Wilken, 1991; Gonyea, 1990). Dementia associated changes in the caregiver- care-recipient relationship include altered communication and interaction patterns (Williamson & Schulz, 1993), disrupted roles and dyadic identity (Gwyther, 1990), diminished emotional closeness, intimacy and companionship (M orris, M orris, & Britton, 1988; Wright, 1991) and lost reciprocity (Bledin, MacCarthy, Kuipers, & Woods, 1990; Gallagher-Thompson, Dal Canto, Jacob, & Thompson, under review). All o f these changes contribute to chronic interpersonal stress. For example, lack o f emotional closeness and intimacy leads to increased resentment (Williamson & Schulz, 1990), anger, and difficulty performing the caregiving role (Morris, Morris & B ritton, 1988). Worsening o f the quality o f the relationship between the caregiver and care-recipient is associated with increased burden (Draper, Poulos, Poulos, & Ehrlich, 1995). Dementia caregivers react to the changes in interpersonal exchanges that characterize their relationship with the care-recipient in ways that can exacerbate relationship stress by increasing care-recipient distress (Schmidt, Bonjean, Widem, Scheffi, & Steele, 1988). Caregivers may withdraw from (Bourgeois, 1991) and avoid the care-recipient (Jivanjee, 1994), place inappropriate demands on the care-recipient, criticize (Gilhooly & Whittick, 1989), angrily confront (Neundorfer, 1991), or otherwise lose control over their own emotional reactions to the care-recipient. These behaviors also can Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 7 be associated w ith negative outcomes in caregivers, such as depression, strain and general psychological distress (M orris, M orris, & B ritton 1989) though the causal direction o f the association is not always clear. Caregivers may react negatively to the care-recipient’s behaviors because they are distressed or their negative reactions to the care-recipient may make the caregiver more distressed. Both possibilities are likely. Caregivers with high distress and burden tend to be less likely to display positive behaviors towards the care- recipient (Gallagher-Thompson, Dal Canto, Darnley, Basilio, Whelan, & Jacob, 1997). Loss o f emotional control and overt criticism o f o r hostility towards, the demented care-recipient are particularly damaging to both the caregiver and care-recipient, as evidenced by studies o f expressed emotion in adult child and spouse caregivers o f demented individuals (Bledin et al., 1990; Vitaliano, Becker, Russo, Magana-Amato, & Maiuro, 1988-89). Bledin et al (1990) found that, in comparison to daughters with low expressed emotion, daughters with high expressed emotion (critical attitude) showed greater strain and distress and less positive attitudes toward their parents. Vitaliano et al (1988-89) found that, in comparison to spouses with low expressed emotion, spouses with high expressed emotion evidenced greater depression and burden and less anger control. In a subsequent study, Vitaliano, Young, Russo, Romano, and Magana-Amato (1993) found that expressed emotion predicted increased negative care-recipient behaviors over time (behaviors included being uncooperative, threatening, angry, paranoid). These negative behaviors are likely to indicate greater distress in the care-recipient and may place greater strain on the caregiver, thereby further exacerbating stress in the relationship and precipitating negative mental health outcomes. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Helping caregivers gain greater understanding of, and control over, their own emotional reactions to the care-recipient may increase appropriate responding and reduce relationship stress. These skills are part o f promoting empathic responding. Just as caregiver negative reactions to the care-recipient can exacerbate relationship stress, positive reactions may decrease relationship stress. For example, Burgener, Jirovec, Murrell, and Barton (1992) found that not only are rigid, tense caregiver behaviors related to rigid, tense and agitated care-recipient behaviors but that relaxed and smiling caregiver behaviors w ere associated with calm and functional care- recipient behaviors in moderately demented nursing home residents. Porszt-M iron, Florian, and Burton (1988) found that caregiver attending behavior (eye contact, touch, relaxed posture, and facial expressions appropriate to the emotional tone o f the interaction with the care-recipient) was associated with decreased inappropriate behaviors in cognitively impaired board and care residents. A third study o f individuals with early- stage Alzheimer’s disease and their caregiving spouses found that caregiver efforts to reduce tension and avoid conflict with the care-recipient were associated with lower depression in the care-recipient (W right, Hickey, Buckwalter, Kelechi, & Hendrix, 1998). The degree to which caregivers are able to respond positively and appropriately to the care-recipient may be a function o f how caregivers are coping with the changing relationship with the care-recipient. For example, caregivers who are able to alter their ways o f relating to the care-recipient did so by accepting the care-recipient for who they had become and seeing possibilities within those param eters for staying connected so to maintain a sense o f emotional connection and relation (Chesla, M artinson, & Muwaswes, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 9 1994). Interestingly, Gaines (1989) observes that caregivers who value emotional expressiveness more than intellectual abilities may experience caregiving as more satisfying given demented individuals’ abilities to sustain emotional relationships longer than intellectual relationships. The variability in caregiver reactions to, and coping with, relationship changes may be determined, to a large extent, by the following factors: understanding the needs o f the care-recipient, skills for effective responding to those needs and, attributions about the care-recipient’s behaviors. Attributions about the care-recipient’s behaviors are likely to be influenced by the caregiver’s orientation tow ard relationships and the quality o f the premorbid relationship with the care-recipient. These factors are reviewed next. Understanding the needs o f the care-recipient and skills for responding to those needs. Caregivers may have a difficult time coping with changing relations with the care- recipient if they have a limited understanding o f the nature o f dementia and its impact on the care-recipient and, a lack o f skills for increasing understanding o f the care-recipient. Hallberg and Norberg (1990) found that when formal caregivers did not understand the meaning o f the care-recipient’s behavior but wanted to understand and respond appropriately to the care-recipient, they felt helpless, sad, powerless and ineffective. These reactions led to anger and irritation at the care-recipient, reactions which could be expected to create distress in the care-recipient and engender further relationship strain. Caregivers seem to have the most difficulty understanding care-recipient behaviors that involve negative interactions with the caregiver. For example, caregivers report Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 10 feeling most distressed by, and ineffective in coping with, care-recipient’s mood disturbances, withdrawal (Greene, Smith, Gardner & Timbury, 1982) and agitation and accusations (Haley, Brown & Levine, 1987; Poulshock & Deimling, 1984). Caregivers may have difficulty coping with these behaviors because the behaviors can be viewed as deliberate and under the care-recipient’s control (and therefore avoidable if the care- recipient only tried harder or cared more). In essence, there is more room for negative or distorted attributions; caregiver attributions o f care-recipient behavior will be discussed in the following section. Increasing caregiver understanding o f the impact o f dementia on the care-recipient, that is, the care-recipient’s reactions to dementia and corresponding coping efforts, may increase caregiver appropriate responding to the care-recipient. M ore appropriate responding is likely to alter negative interactions and increase feelings o f efficacy, thereby reducing relationship strain and distress in both the caregiver and care-recipient. Caregiver attributions o f care-recipient behavior: the role o f quality o f premorbid relationship and relationship orientation. Caregivers’ coping with the changing relations with the care-recipient is influenced by their attributions o f these changes. Two factors likely to influence attributions are the quality o f the premorbid relationship and relationship orientation. These factors also are likely to influence the caregivers’ capacity to be empathic towards the care-recipient. The quality o f the caregivers’ past relationship with the demented care-recipient may influence how caregivers appraise, experience and respond to the changing relations with the care-recipient and, in turn, how they react to the care-recipient. Caregivers with Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. II an unhappy o r emotionally distant relationship prior to the onset o f dementia are more distressed, depressed, burdened and have lower well-being than caregivers with generally good and emotionally close past relationships (Ballard et al., 1995; Gilleard, Belford, Gilleard, W hittick & Gledhill, 1984; Pratt, Schmall & Wright, 1986; Schulz & Williamson, 1991; Williamson & Schulz, 1990). Part o f the reason that caregivers with a poor past relationship history with the care-recipient are m ore depressed than those with a good past relationship may be because they make incorrect attributions about the purposefulness or intentionality o f the demented individual’s behaviors (Jivanjee, 1994). Incorrect attributions, in turn, are linked to caregiver distress (Deimling & Bass, 1986), anger, hostility and critical comments towards demented person (Barnes, Raskind, Scott, & Murphy, 1981; Bledin et al., 1990; Gilhooly and W hittick, 1989). Thus, caregivers with a poor past relationship may believe that the care-recipient’s behavior reflects deliberate attempts to manipulate or annoy the caregiver rather than reflecting symptoms o f the disease and/or efforts to cope with these symptoms. For example, Bledin et al. (1990) found that daughters caring for a demented parent were most critical o f care-recipient behaviors that could be viewed as more deliberate and under the parent’s control such as repetition, messiness and argumentativeness. Expectations o r attributions are likely to influence caregivers’ feelings o f efficacy about coping with care-recipient behaviors (Haley, Levine, Brown & Bartoiucci, 1987) and, in turn, psychological distress. For example, daughters with unrealistic expectations about their parent’s behavior tended to use unhelpful coping strategies (Bledin et al., 1990), though the authors o f this study do not define these unhelpful, maladaptive Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 12 strategies. Taken together, these findings suggest that helping caregivers form more realistic attributions about the care-recipients’ behavior is im portant to facilitating coping with relationship changes. A second factor that may influence how caregivers appraise changing relations with the care-recipient and, in turn, how they react to the care-recipient, is the caregivers’ orientation tow ards relationships. An orientation towards relationships refers to one’s expectations, values and beliefs about how two people should act in relation to each other. The literature on relationship orientation tends to discuss tw o primary types: communal orientation, proposed originally by Clark and Mills (1979) and, exchange orientation, proposed by M urstein, C erreto and MacDonald (1977) and grounded in equity theory (Berkowitz & W alster, 1976). Individuals with a communal orientation show perceived responsibility for another person’s welfare, a desire to benefit the other person when he/she is in need and a high responsiveness to others’ emotions, the latter o f which is thought to be related to empathy (Clark, Ouellette, Powell, & Milberg, 1987). Individuals w ith a communal orientation also expect that others will be responsive to their own needs and demonstrate concern for their welfare but do not feel exploited when others can not reciprocate in an equal manner. In contrast, individuals with an exchange orientation expect equity o f exchange in their relationships; that is, giving benefits only in response to benefits received in the past, or with the expectation o f receiving benefits in the future. They are distressed when inequity is perceived (M urstein et al., 1977; Sprecher, 1992). Research studies rarely examine these tw o orientations in the same people and it is not clear from theoretical formulations Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 13 whether they are meant to be orthogonal constructs, or even if they are meant to represent two poles o f a single continuum. One study o f predominantly female caregivers o f spouses who had experienced a myocardial infarction, bypass surgery and/or complications from surgery, found a small, positive correlation between the two orientations (Thompson, Medvene, & Freedman, 199S). Caregivers with high communal or low exchange orientations may be able to cope better with their changing relationship with the care-recipient than caregivers with a low communal orientation towards relationships or a high exchange orientation towards relationships. The higher the caregivers’ communal orientation, the more likely they are to experience concern for the care-recipient’s welfare, respond to the care-recipient’s needs and alter their expectations o f how the care-recipient can be responsive to the caregiver in a way that takes into account the care-recipient’s limitations. M ore realistic expectations would prom ote coping with relationship changes and minimize distress. Conversely, the higher the caregivers’ exchange orientation, the more focused they may be on the care- recipient’s reduced ability to reciprocate. This focus may hinder acceptance o f the care- recipient’s limitations and appropriate responding, and impinge on coping with relationship changes. This assertion is consistent with findings that dementia caregivers low in communal orientation were m ore depressed (Williamson & Schulz, 1990) and burdened (Schulz, Williamson, Monycz & Biegel, 1992) than those caregivers high in communal orientation. (For a review o f communal relationships and caregiving, not limited to dementia caregivers, see Williamson & Shaffer, 1998). Conversely, in a study o f spouse caregivers Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 14 o f individuals with cancer, caregivers with a high communal orientation towards the care- recipient were depressed but not resentful o f caregiving (though they were not as depressed as low communal caregivers). The authors conclude that caregivers were depressed due to greater concern about the implications o f physical decline for their partner (Williamson, Shaffer, & Schulz, 1998). Consistent with these findings, a study o f non-dementia caregivers found that caregivers who are more exchange oriented than communal oriented towards their marital relationship, specifically, w ere more resentful o f caregiving (Thompson et al., 1995). In addition, among non-caregiving married couples, exchange orientation was positively associated with low marital satisfaction (Murstein et al, 1977; Broderick & O’Leary, 1986). Summary. Dementia alters the caregiver-care-recipient relationship and creates stress in the relationship. Caregivers react to relationship changes in a variety o f ways, some o f which can exacerbate relationship stress and others o f which minimize relationship stress. Several factors may contribute to how effectively caregivers cope with the changing relationship with the care-recipient. These factors include degree o f understanding o f the care-recipient’s needs and behaviors, skills for increasing understanding and, type o f attributions about the care-recipient’s behavior. Attributions likely are influenced by the quality o f the caregivers’ premorbid relationship with the care- recipient and caregivers’ orientation tow ards relationships. Collectively, poor understanding o f the care-recipient’s needs and behaviors, lack o f skills for increasing understanding and, unrealistic attributions about the care-recipient’s behavior can leave caregivers feeling ineffective in handling both their own reactions and those o f the care- Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 15 recipient. Ways in which caregivers can learn to manage reactions more effectively and cope with stress from changing relations with the care-recipient is informed by the literature on relationship-focused coping. Relationship-Focused Coping as a Model for Coping with Interpersonal Stressors and the Relative Im portance o f Empathy The following section examines coping strategies used to manage interpersonal stress often associated with chronic illness. These strategies collectively are referred to as relationship-focused coping. A specific relationship-focused coping strategy that may be particularly effective for handling stress in the caregiver-demented care-recipient relationship is empathic coping. Empathic coping refers to the caregivers’ use o f empathic responding to the care-recipient as a way to facilitate positive interactions and reduce negative interactions (DeLongis & O’Brien, 1990). The way in which empathic responding supports relationships and the association between empathy and outcomes is examined next. Relationship-focused coping. Two conceptualizations o f relationship-focused coping have been developed but not directly compared (Coyne, Ellard, & Smith, 1990; Coyne & Smith, 1991; Coyne & Smith, 1994; DeLongis & O ’Brien, 1990; O’Brien & DeLongis, 1997). Both conceptualizations share the distinction o f focusing on individuals’ efforts to cope with interpersonal stress and thus, both are potential targets o f an intervention designed to increase dementia caregivers’ coping with stress stemming from the changing relationship between the caregiver and care-recipient. However, only Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. «* 16 DeLongis and O’Brien’s model was used to inform the Empathic Coping intervention, because the model was developed, initially, for dementia caregivers. DeLongis and O ’Brien (1990) and O’Brien and DeLongis (1997) define relationship-focused coping as efforts to manage, regulate or preserve relationships during times o f stress. They describe tw o major modes o f relationship-focused coping. The first mode encompasses behavior that results in disrupted and damaged relationships such as criticizing, ignoring, confronting, o r minimizing contact with others. The authors suggest that this mode o f coping can be adaptive or maladaptive depending on the circumstances under which it is used; for example, minimizing contact is adaptive if one is in an abusive relationship. The second mode includes behaviors that result in maintained o r enhanced relationships such as negotiating or compromising, considering the other’s limitations and being empathic. Being empathic as a means o f maintaining or enhancing relationships is referred to by DeLongis and O ’Brien (1990) as empathic coping but it is considered an effort subsumed in the second class o f coping. Empathic coping was considered the best means for improving dementia caregivers’ ability to manage stress in their relationship with the care-recipient. Unlike the other efforts directed at maintaining or enhancing relationships, (e.g. negotiation and problem-solving discussions), empathic coping does not require the full cognitive capacity o f both members. Thus, it is appropriate for dementia caregiver-care-recipient dyads in which the care-recipient has reduced cognitive capacities. Negotiation and problem solving discussions, on the other hand, would place inappropriate demands on the care- recipient, provoking negative interactions and further aggravating stress in the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 17 relationship. Furthermore, empathic coping utilizes the care-recipient’s remaining socioemotional abilities and thereby provides a way to keep the care-recipient participating in the relationship. It also offers the possibility o f altering the quality o f the interaction between the caregiver and care-recipient. This change in the quality o f the interaction would presumably also reduce caregiver behaviors that resulted in damage to the caregiver-care-recipient relationship. The only empirical examination o f this construct in cognitively impaired adults supports the benefits o f building empathic coping in dementia caregivers (i.e., empathic responding to the care-recipient). Empathic coping was found to be positively associated with caregiver satisfaction in female spouses caring for a husband with Alzheimer’s disease (Kramer, 1993). Confrontation, withdrawal and blaming were associated with depression and low satisfaction with social involvement. Empathy as a relationship-focused coping strategy. Empathy is defined as the identification with, and understanding o f the thoughts and feelings o f another and attempts to communicate this understanding to the other. Empathy is comprised o f three components. The first component is a vicarious affective reaction that occurs as a response to another’s emotional state and is congruent with that emotional state or situation (Eisenberg & Strayer, 1987). Although the affective reaction need be congruent with the other’s state, it is recognized as distinct from the other’s state. W ithout this distinction, the observer may be overwhelmed by his/her own arousal and become focused on reducing his/her own arousal rather than that o f the observed other. A second component o f empathy is a cognitive awareness, understanding, or knowing o f another’s Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 18 state or condition or o f how another might be affected by something that is happening to him/her based on the ability to take the perspective and role o f another— to view the world as that person sees it (Eisenberg & Strayer, 1987; Feshbach, 1987; Goldstein & Michaels, 1985). The third component o f empathy is communication o f caring feelings or sincere attem pts to understand another in an accepting, non-judgmental, emotionally-validating way. These attem pts often include helping— a behavioral response designed to reduce the other’s distress (Eisenberg & Miller, 1987). In term s o f caregiving, promoting caregivers’ empathy for the care-recipient can be expected to decrease stress engendered by the changing relations between the caregiver and care-recipient. It can be expected to do so in the following manner: (1) empathic coping allows individuals to recognize that the involved other’s actions and feelings make sense in light o f that person’s vantage point or position; this understanding may enable individuals to alter their own appraisals o f the situation, their emotional reactions to the involved other and their behavioral responses to the other; (2) empathic coping allows individuals to evaluate how their own actions may be affecting the well-being o f the involved other and contributing to interpersonal stress; increased understanding o f how their behaviors may negatively impact others may allow individuals to generate new ways o f behaving and responding that are less distressing and m ore supportive o f the other; (3) empathic coping allows the involved other to express and process feelings, which may diminish the involved other’s negative affect and may prom ote greater emotional connection and satisfaction in the relationship and (4) em pathic coping may allow more constructive problem-solving, problem-solving that considers the involved other’s feelings Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 19 and concerns and attem pts to find a solution that considers the other’s feelings, concerns and possible distress (O ’Brien & DeLongis, 1997). An additional way in which empathy for the care-recipient can be expected to reduce stress in the caregiver-care-recipient relationship is by addressing the three factors thought to hinder coping with the changing relations that contribute to this stress: poor understanding o f the care-recipient, lack o f skills for increasing understanding and unrealistic attributions about the care-recipient. Furthermore, empathic responding could create a supportive interaction between the caregiver and care-recipient which could serve as a resource that buffers against further relationship changes and other negative aspects o f caregiving (Dunkel-Schetter, Blasband, Feinsten & Hersen, 1992). The buffering effect o f supportive interactions on caregiver mental health is supported by the finding that the following factors mediate the negative aspects o f caregiving: (1) continuing to experience a positive relationship with the demented care-recipient (2) seeing the demented care- recipient appreciate and respond positively to the care provided and (3) knowing that the care-recipient loves them (Farran et al., 1991). Positive aspects o f caregiving, in general, have been associated with greater well-being (Motenko, 1989). The association between empathy and mental health outcom es has received empirical support in caregiving and non-caregiving dyads. Empathic responding predicts relationship maintenance and satisfaction in non-caregiving dyads (Johnson & Greenberg, 1995; Rowan, Compton, & Rust, 1995) and lower distress in caregivers o f non-demented individuals (Rose & DelM aestro, 1990). As mentioned earlier, empathic responding/coping, in addition to other relationship maintenance strategies, predicted Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 20 caregiver satisfaction in female spouses caring for a husband with Alzheimer’s disease (Kramer, 1993). In this same study, lack o f empathy was associated with confrontation, withdrawal and blame. These behaviors can be expected to have negative consequences on the care-recipient and exacerbate stress in the dyadic relationship, as indicated by findings in parent-child relationships. Low empathy in parents has been associated with risk for child abuse (Letoumeau, 1981; Wiehe, 1997) and with greater behavioral symptoms in children (Feshbach, 1987). Parents’ lack o f skills to modify their children’s behavior is another variable that increases risk for abuse (Feshbach, 1987). The relationship between low empathy, impoverished skills and risk for abuse also may extend to the dementia caregiver-care-recipient relationship. For example, in a sample o f dementia caregivers, caregivers feared being violent towards the care-recipient due to their frustration at the care-recipient’s disruptive behaviors (agitation, wandering, depression, hallucinations, fear o f being alone, inability to recognize people) and the care-recipient’s impaired communication; those caregivers who became violent tow ards the care-recipient often did so in response to the care-recipient’s own violent act (hit caregiver o r otherwise tried to physically harm the caregiver) (Pillemer & Suitor, 1992). An intervention designed to increase caregiver capacity for empathy for the care-recipient may reduce risk for, or actual, elder abuse. Summary. Relationship-focused coping involves efforts to manage relationships during times o f stress, often through efforts to balance each member’s feelings and needs. Empathic coping is a specific relationship-focused coping strategy that may be particularly effective for handling stress in the caregiver-demented care-recipient relationship. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 21 Empathic coping refers to the caregivers’ use o f empathic responding to the care-recipient as a way to facilitate positive interactions and reduce negative interactions. Empathy provides a means for caregivers to bolster the care-recipient’s coping with the disease through support, reassurance and maintained emotional connection. As a result, the care- recipient can be expected to be less distressed and have more positive interactions with the caregiver. Furthermore, empathy (as attempts to understand and communicate that understanding) can be expected to decrease caregivers’ negative or unrealistic appraisals o f the care-recipient’s behavior and increase appropriate responding. Appropriate responding is likely to alter interactions with the care-recipient in a way that reduces negative interactions and increases positive interactions. This effect can be expected to increase caregivers’ perceived efficacy or competence in managing relationship changes with the care-recipient and increase satisfaction with the relationship. This change can be expected to make the care-recipient feel supported, the caregiver feel better about caregiving and, both caregiver and care-recipient experience less relationship strain and associated distress. Factors Affecting Empathy The following section describes factors that influence empathy. These factors include the extent to which an individual shows perceived familiarity and similarity with the person being observed, personal distress at observing distress in the observed other, understanding o f the observed other’s needs, perceived competence to respond to the other’s needs and reduce the other’s distress and, satisfaction o f his/her own needs. These factors are expected to influence caregivers’ empathic responding tow ards the care- Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 22 recipient and caregiver effectiveness in managing changing relations with the care- recipient. However, one caveat needs to be noted. The majority o f this literature pertains to relationships amongst strangers; although the assumption is made that this literature also is applicable to personal relationships, it may not generalize completely. For example, in the case o f perceived familiarity and similarity, in a personal relationship, an individual can draw on a history o f w hat the observed person’s behaviors have meant in the past. With a stranger, there is no history, so the individual is forced to rely on himself/herself (which may influence attributions o f the other’s behavior). In addition, personal distress at seeing another in need may be more likely in the context o f a personal relationship than a stranger relationship. Perceived familiarity and similarity between an individual and the observed other, in terms o f shared characteristics o f shared personal experiences, influence empathy. The greater the individual’s perceived similarity and familiarity with the other, the greater the empathy (Barnett, 1987; Hoffman, 1982, 1987). If the individual has had similar experiences to those o f the person being observed, the individual may be more apt to make an association between his/her own experience and that o f the other, resulting in a greater affective reaction and cognitive understanding o f the other’s situation o r feelings. For example, the individual’s past memory o f pacing around a room when feeling anxious may lead him/her to feel and assume anxiety when he/she sees another pacing around a room. This finding suggests that, in terms o f the caregiver-care-recipient relationship, caregivers’ empathic responding to the care-recipient will necessitate that caregivers draw on examples in their own lives in which they experienced similar em otions o r situations to Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 23 those o f the care-recipient. However, caregivers must view their experiences as similar but separate from the care-recipient; otherwise they may feel overwhelmed by arousal and experience personal distress, a factor that impinges on empathic responding. Personal distress in reaction to seeing another in distress or in need is a second factor that inhibits empathic responding (Eisenberg & Strayer, 1987). Distress inhibits empathic responding because the individual becomes preoccupied with his/her own feelings and needs rather than those o f the observed other and acts to reduce his/her own distress rather than acting to reduce the distress o f the other (Batson & Coke, 1981; Lennon & Eisenberg, 1987). Thus, in term s o f the caregiver-care-recipient relationship, if caregivers experience personal distress in response to seeing the care-recipient in distress, they may act to reduce their own distress. These reactions may lead to ineffective, or even detrimental responding to the care-recipient (e.g. withdrawal, challenge) which could compound further negative interactions and stress from changing relations. Caregivers who have poor relationship boundaries with the care-recipient and those who do not perceive themselves as capable o f responding effectively to the care-recipient are likely to experience personal distress when observing the care-recipient in distress or in need. W eak self-other differentiation or an excessive association between oneself and another can impair an individual’s ability to differentiate between his/her own arousal and that o f the other (Eisenberg & Strayer, 1987). The inability to differentiate between oneself and another can cause the individual to feel overwhelmed by arousal. Thus, empathic responding requires a recognition o f one’s own individuality and separateness from the other so as to keep oneself from being overwhelmed by the distress o f the other Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 24 (DeLongis & O’Brien, 1990). In term s o f the caregiver-care-recipient relationship, caregivers who are unable to maintain some degree o f separateness from the care-recipient are likely to experience personal distress at seeing the care-recipient in need and may have difficulty effectively responding to the care-recipient. A third factor that impinges on empathy is perceived lack o f skill o r competence in being able to reduce another’s distress (Staub, 1987). If the individual believes that he/she is unable to help, empathy with the other is aversive and less likely to arise (Barnett, Thompson & Pfeifer, 1985). Thus, in the context o f the caregiver-care-recipient relationship, caregivers who feel ineffective in reducing the care-recipient’s distress will have a harder time being empathic. Another factor that hinders empathic responding is lack o f understanding o f the other’s needs. In terms o f the care-giver-care-recipient relationship, caregivers who have a limited understanding o f the specific needs and coping responses o f the care-recipient will have a harder time being empathic. O f note is that there is a likely interdependence among lack o f understanding o f the care-recipient’s needs, poor perceived competence to meet those needs and low empathy. It is undoubtedly difficult for caregivers to respond accurately to the care-recipient if the cause o f distress and underlying need are not clear and the caregiver does not know how to discern the cause or underlying need. A final factor impairing empathic responding is feeling that one’s own needs are insufficiently satisfied (Barnett, King, Howard, 1979; Underwood, Framing, & M oore, 1977). In terms o f the caregiver-care-recipient relationship, caregivers who have no outlet for meeting their own needs will have a harder time focusing on the needs o f the care- Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 25 recipient. However, this effect may be mitigated if meeting the care-recipient’s needs also provides a way to help meet the caregiver’s own needs. Summary. Several factors can be expected to influence caregivers’ empathic responding tow ards the care-recipient and should be addressed in an intervention that seeks to teach empathic coping. These factors include the extent to which caregivers view their experiences as similar to, but separate from, the care-recipient, perceive themselves as having the skills to respond to the care-recipient when in need and reduce the care- recipients’ distress and, have their own needs satisfied. An intervention designed to promote caregiver empathic responding to the care-recipient (that also addresses the aforementioned factors) purports to be a viable strategy for managing changing relations between the caregiver and care-recipient and reducing stress from these changes. Empathic responding may prove better than other coping strategies used to manage this stress based on the issue o f domain and content specificity in coping. Domain Specificity in Coping This section examines types o f coping efforts other than relationship-focused coping and the notion o f domain specificity in coping. There is a growing recognition in the caregiver stress and coping literature o f the multidimensional nature o f stress and coping in caregiving Many argue for the examination o f coping with specific caregiving stressors rather than with the more general, “stresses o f caregiving” because caregivers use different coping efforts with different types o f stressors and with varying degrees o f effectiveness. G reater and more precise Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 26 information is gained by exploring coping within stress domains than across domains (Gottlieb & Gignac, 1996; Pruchno & Resch, 1989; Williamson & Schulz, 1993). Caregiver efforts to manage the stresses associated with caregiving, including stress in their relationship with the care-recipient, can be as varied as the caregivers themselves. Classification schemes for coping efforts are nearly as diverse. These schemes are adopted as a way to better understand the relationship between coping classification and physical health and mental health outcomes. F or the purposes o f this paper, coping efforts are discussed using the dimensions o f coping as outlined in Gottlieb and Gignac (1996) and Gignac and Gottlieb (1997). These dimensions are: cognitive coping, or things that caregivers tell themselves; escape/avoidance coping, or things that caregivers wish for or try not to think about; support-seeking, o r talking to others about the situation and their feelings about it; emotion-focused coping, o r things that caregivers tell themselves to handle their negative feelings or to keep from getting upset; and problem-focused coping, or things that caregivers do in order to manage or change the situation or behavior. Each class can contain numerous strategies and some strategies may not obviously fit into any one class. (See Kramer & Vitaliano, 1994 for an alternative review o f coping strategies). Relationship-focused coping (including empathic coping) has not been included in reviews specifically. In general, when caregiver coping is considered across stress domains, escape- avoidance and emotion-focused strategies tend to be associated with depression, anxiety, burden, general psychological distress, low life satisfaction and poor physical health (Haley et al., 1987; Neundorfer, 1991; Pruchno & Resch, 1989; Rose, Strauss, Neudorfer, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 27 Smyth, & Stuckey, 1997; Wright, Lund, Caserta & Pratt, 1991). Problem-solving and cognitive coping are positively related to life satisfaction and well-being and negatively related to depression and general psychological distress (Haley et al., 1987; Knight, 1991; Pruchno et al., 1989; Quayhagen & Quayhagen, 1988; Rose et al., 1997; W right et al., 1991). Support-seeking is associated with greater well-being (Quayhagen & Quayhagen, 1988) in spouse caregivers. However, evidence is accumulating that the aforementioned associations between coping and outcom es do not adequately capture the complexity o f the stress and coping process because the type o f stressor and the context in which the stressor occurs are important determ inants o f outcome (Haley, Levine, Brown, & Bartolucci, 1987; Williamson & Schulz, 1993). For example, Williamson and Schulz (1993) found that when caregivers w ere dealing with the care-recipient’s memory problems, direct action (problem-solving) was associated with more depressed affect whereas relaxation strategies were associated w ith less depressed affect. When dealing with communication impairments and decline in the care-recipient, stoicism was related with more depressed affect while acceptance and support-seeking were related to less depressed affect. The finding regarding acceptance is consistent with other reports that have found acceptance to be associated with lower depression, higher positive affect and less negative symptomology (Jivanjee, 1994; Pruchno & Kleban, 1993; Pruchno & Resch, 1987). Acceptance can be considered both an emotion-focused and a relationship-focused strategy in that it likely will help the caregiver refrain from blaming or criticizing the demented care-recipient for his/her behaviors. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 28 Thus, investigations o f stress and coping in dem entia caregivers are likely to glean more precise information about the relationship between stress and outcome if they examine specific stressors rather than general stresses o f caregiving. The present study attempted to address this issue by examining caregivers’ coping with three specific stressors: their relationship with the care-recipient, management o f household responsibilities and participation in social activities. These specific stressors were chosen because they were thought to be distinct enough to elicit different coping strategies yet also general enough such that they would be relevant to m ost caregivers and would be a primary target in the intervention groups. Summary. Caregivers use a variety o f strategies to cope with the stresses o f caregiving. These strategies include cognitive coping, escape/avoidance coping, support- seeking, emotion-focused coping and problem-focused coping. In general, when caregiver coping is considered across stress domains, escape-avoidance and emotion-focused strategies tend to be associated with negative psychological and physical health outcomes, whereas problem-solving, cognitive coping and support-seeking are associated with positive outcomes. However, the association between coping strategy and outcome often appears to be mediated by the type o f stressor and the context in which the stressor occurs (e.g., Pruchno & Kleban, 1993). The discussion o f the literature up until this point has been focused on developing the basic rationale for the Empathic Coping intervention for caregivers. The discussion will now focus on literature that informs the structure and content o f the Empathic Coping Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 29 intervention and dem onstrates the effectiveness o f similar approaches with other populations. Approaches for Teaching Empathy This section reviews three major classes o f approaches to building empathy. Although most o f these approaches are used to train graduate student mental health care counselors, a few are used with lay populations. These approaches are didactic- experiential, interpersonal skills training, including programmed self-instruction and comprehensive helping skills training programs. All o f the programs share similar objectives and differ primarily in strategies and techniques for achieving the objectives. Empathy is viewed as skill for developing and maintaining good relationships. Didactic-experiential. One major class o f approaches to building empathy is didactic-experiential, which includes tw o different formulations. One form ulation is based on the work o f Truax and C arkhuff (1967) and Truax, Carkhuff and Douds (1964). The objective o f this approach is to increase trainee’s empathy through knowledge and experiential learning. Techniques for increasing empathy include reading about empathy, listening to tapes o f psychotherapy sessions and rating the therapist on empathic responding, practice exercises in giving empathic responses using modeling and role plays and, receiving feedback o f interviews with actual clients. A second formulation o f the didactic-experiential approach is based on the w ork o f Carkhuff (1969a, 1969b). The objective o f this approach is to build empathy through knowledge and experiential learning but with the recognition that empathy has graded levels o f expression, from basic to advanced. Trainees are taught information concerning the nature o f empathy, its functions Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 30 and consequences while simultaneously being exposed to a variety o f taped psychotherapy sessions demonstrating these points. Within-session exercises and homework assignments focus on listening to and rating the taped sessions. Ratings are discussed with peers and supervisors. Trainees then are given intensive training in effective communication o f empathic understanding, concentrating on the client’s verbal and non-verbal responses. This training includes responding to tapes, role-playing and conducting and receiving feedback on interviews with actual clients. In addition, supervisors model empathy and use empathic responding with the trainees such that the trainees have their own communication empathetically understood. Trainees are encouraged to formulate responses using language attuned to the client and to respond in a feeling tone similar to that communicated by the client. Then trainees are taught more advanced forms o f empathy such as how to move tentatively toward explaining and clarifying the client’s experiences, including those that are not being expressed by the client. Trainees are reminded to use the client’s behavior as a guideline for assessing the effectiveness o f their own responses. Interpersonal skills training. A second major class o f approaches to teaching empathy is interpersonal skills training. Several representative approaches are examined here. One interpersonal skills training program is Structured Learning (Goldstein, 1973, 1981). The objective o f this program is to enhance interpersonal skills, including empathy. It teaches skills through instruction, modeling, role playing or behavioral rehearsal, and feedback. In term s o f empathy, trainees are shown specific and detailed displays o f a Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 31 person acting empathetically via audiotape, videotape, film or in-person. They then are given the opportunity and encouragement to rehearse specific behaviors comprising the target component skill and to act in a way that is as relevant as possible to real life situations. Trainees are given coaching and prompting as needed for increasing performance as well as positive feedback and reinforcement. Another interpersonal skills training program is Relationship Enhancement (Guemey, 1977). The objective o f this program is to give lay participant trainees skills that will allow them to be empathic and that will improve their interpersonal relationships and, in turn, their mental health. Four sets o f skills are taught: expressive, empathic responsive, mode switching (between expressive and responsive) and facilitator (in which the trainee teaches the first three skills to others). Training includes providing factual information about empathy; modeling o f incorrect and correct use o f the component skills; discussing the modeling exercises and, assigning within-session and outside-of-session practice exercises. Trainees are given graded expectations about skill improvement and reinforcement o f effective skill use, with attention to discriminating appropriate from inappropriate behaviors. A third interpersonal skills training program is programmed self-instruction (Bullmer, 1972, 197S). The objective o f this program is to improve interpersonal perception. It is based on the assumption that an individual’s ability to understand and perceive others accurately is necessary for the development o f meaningful interpersonal relationships. This program differs from other interpersonal skills programs in that it focuses on improving trainees’ perceptual skills rather than their response behaviors. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 32 Skills are learned through self-instruction (book) and learning is evaluated through practice tests. The book first discusses the nature o f interpersonal perception and sources o f error in interpersonal perception. Sources o f error include distortion and the use o f implicit personality theories that develop from the individual’s past learning, experiences, values, beliefs and attitudes. Finally, the book discusses how to identify emotions in others, the situational determinants o f emotional expression and, barriers to expression. Barriers include a tendency to evaluate, judge, and approve or disapprove o f the behavior o f others on the basis o f the individual’s own needs, motives and emotions, that is, on the basis o f his/her own frame o f reference. Collectively, the interpersonal skills programs are more broadly conceptualized than the didactic-experiential approaches and have been developed explicitly, or adapted for, the use with lay populations. Differences across the interpersonal skills programs seem to be minimal. Helping skills program s. A final major class o f programs designed to teach empathy are comprehensive helping skills programs. One program was developed by Egan (1976) and referred to initially as the Interpersonal Living Library. This approach has evolved over time (Egan ,1986) and more recently, is viewed as a problem- management approach to helping (Egan, 1994). The objective o f the latest formulation o f this program is to help clients more effectively manage problem situations and to take advantage o f unused opportunities. One means for achieving this objective is to create an effective helping relationship, primarily through good interpersonal skills, o f which empathic responding is a major component. Techniques for enhancing the therapist Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 33 trainee’s interpersonal skills (variously discussed in all formulations o f this approach) involve didactic instruction, experimentation and feedback. Skills are grouped into core areas: (I) self-presentation skills, including self-disclosure, concreteness, and feelings expression; (2) response skills, including attending, listening, basic empathic understanding, and communication o f genuineness and respect and (3) challenge skills, including advanced empathic understanding, confrontation and immediacy. For each skill area, trainees learn the theory underlying the skill and practice the skill through written exercises, role plays and out-of-session assignments. Exercises focus on communicating to the client one’s understanding o f the content o f what is said and the feelings expressed, expressing to the client w hat the client only implied, identifying them es in the client’s discourse and providing a summary o f what is said and, helping the client draw conclusions about his/her situation o r problem. A second helping skills training approach program is M icrotraining, formulated by Ivey and Authier (1971, 1978). The objective o f this program is to enhance trainee’s interpersonal communication o r helping behavior by teaching respect, empathy and genuineness. These behaviors are operationalized in terms o f highly discrete, concrete skills that comprise four main categories: basic attending, self-expression, influencing and focus skills. Trainees are taught how to: identify and attend to client’s feelings; listen, ask questions and encourage client expression; interpret client statements; confront the client, give direct feedback and provide suggestions or opinions and; elicit feedback from the client about the trainee’s interpretations. This program also teaches trainees’ how to identify and express their own feelings and, when and how to share them in appropriate Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 34 self-disclosure. A set structure is used to teach the aforementioned skills. This structure is: (1) delineate the skill, (2) model the skill on videotape and (3) provide sufficient opportunity for mastery through role-playing, practice and immediate feedback. A third helping skills program, complete with leader and trainee manuals, was developed by Danish and H auer (1973) and modified by Danish, D ’Augelli and Hauer (1980). The purpose o f this program is to improve trainees’ basic helping skills and their understanding o f their needs to be a helper. The program is based on the premise that effective skill learning requires four conditions: (1) acquiring a conceptual understanding o f the components o f the skill (knowledge); (2) viewing others demonstrate the various aspects o f the skill (modeling); (3) having an opportunity to use the skill under supervision (practice) and (4) receiving feedback. The program also delineates levels o f skill attainment. Specific helping skills taught are broken into categories: (a) establishing rapport and trust with the client through careful use o f non-verbal and verbal responding, (b) listening to and communicating understanding o f the client, (c) encouraging the client to talk and assisting the client in clarifying his/her problem. Verbal responding includes: (1) continuing, content and affective responses, (2) leading responses and (3) self-referent responses. Continuing, content and affective responses summarize or reflect the content of, and implied feeling behind, what the client has said. Leading responses encourage client self-expression and provide direction through advice and influencing client behavior. Leading responses change the nature o f the helping relationship by starting the process o f resolving the client’s problem, shifting the responsibility for change from the client to the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 35 trainee. Self-referent responses involve using the trainee’s feelings and experiences as effective helping tools via self-involving and self-disclosing statements. The main tenet o f this program is that effective helping relationships are established through a complex set o f processes: observing the client, giving tentative descriptions o f what the client is feeling, gathering additional information and hypothesis testing, then drawing conclusions about what the client is feeling and expressing these conclusions to the client in a constructive and tentative way. The focus is on interpersonal perception, noting discrepancies between verbal and non-verbal behavior, labeling the client’s unstated feelings, and role-taking from the client’s perspective. Summary. The major classes o f approaches to teaching empathy are didactic- experiential, interpersonal skills training, including programmed self-instruction and, comprehensive helping skills training programs. All o f the programs share similar objectives and differ primarily in strategies and techniques for achieving the objectives. Empathy training often is embedded in a larger interpersonal skills or helping skills training program because it is seen as a means for developing and maintaining interpersonal relationships. Many o f the strategies adopted in these programs can be used in a training program designed to teach caregivers to be more empathic toward the care-recipient as a means o f managing their relationship with the care-recipient. The components that seem to be the m ost relevant to a program for caregivers are interpersonal perception (including attributions as a source o f misperception and need for perspective-taking), identification and labeling emotions (in both caregiver and care-recipient) and response skills (attending, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 36 listening, basic empathic responding). The specific content o f the intervention will be discussed in detail in the methods section o f this paper. Empirical Investigation o f Empathy Training Programs The teaching o f empathy has tended to be with mental health care professionals and trainees, nurses o r paraprofessionals. However, it also has been taught in several lay populations: high school and college students (Hatcher, Nadeau, Walsh, Reynolds, Galea, & M arz, 1994), sex offenders (Pithers, 1994) and infertile women (Ferber, 1995), although in this latter group, self-empathy was the focus. Thus, there is reason to believe that empathy-skill development (and thus, relationship-building behaviors) is possible in caregivers o f demented individuals. An Empathic Coping Intervention: M eeting an Existing Need The need for an approach aimed specifically at increasing coping with relationship changes is supported by descriptive data gathered from caregivers themselves. In a large survey o f caregiver Inform ation/Support group participants (47 groups and 301 members), the majority o f caregivers reported finding the groups helpful in the following areas: (1) providing information about dementia, health and social services and, legal and financial resources, (2) learning how other caregivers are coping with their problems, (3) offering an outlet for their feelings and (4) reducing feelings o f isolation (Gonyea, 1989). However, over tw o-thirds o f caregivers reported that groups were not helpful in teaching them ways to enhance their relationship with the demented care-recipient or ways to manage their own reactions to caregiving, particularly anger and guilt (Gonyea, 1989). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 37 Inform ation/Support groups may discuss the issue o f interpersonal relations and communication (Toseland & Rossiter, 1989). However, generally the content is not limited to the caregiver-care-recipient relationship, and there is no systematic teaching o f strategies— including empathy— for improving this relationship. In fact, most psychosocial intervention program s do not specifically and systematically make relationship management with the care-recipient a goal. For example, out o f over 20 published empirical studies o f Information/Support groups and skill training groups, only one mentioned increasing communication with the demented care-recipient as a goal, but even then the objective was to facilitate improvement in the demented care-recipients’ activity participation. The relative inattention within the caregiver intervention literature to managing changes in the caregiver-care-recipient relationship may explain, in part, why a meta analysis o f psychosocial interventions for caregivers found only a small, though positive, effect on caregiver distress (Knight, Lutzky & Macofsky-Urban, 1993). One could argue that this small effect means that there is room for other approaches, o f which building caregiver empathic responding for the care-recipient is one approach. Rationale for the Present Study The changes in psychological and social functioning that accompany dementia precipitate changes in relations between demented individuals and their family caregivers. These changing relations create interpersonal stress between the caregiver and care- recipient. The caregiver’s effort to cope with this stress affects the care-recipient, either promoting relationship maintenance coping strategies o r threatening the relationship and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 38 further exacerbating the stress related to changing relations. Psychological outcomes are dependent on the coping strategy employed. If caregivers can increase their empathic responding to the care-recipient (empathic coping), distress related to interpersonal stress should decrease, well-being should increase and satisfaction and competence with caregiving should improve. It also can be argued that satisfaction with the relationship may change, which is likely to influence cognitive processes (e.g. attributions) that in turn affect communication and interaction patterns which further support relationship maintenance. Furthermore, the care-recipient is likely to react to changes with reduced distress and behavioral manifestations o f distress. Thus, the end goal is improvement in the quality o f the daily interaction between the caregiver and care-recipient. Empathic responding/empathic coping may be better than other strategies for managing relationship changes based on 1) increasing specificity between interpersonal stressors and interpersonal coping responses and 2) strengthening o f the interpersonal relationship as a protective buffer against further relationship stress. Hence, empathic responding offers a potential means for addressing an existing gap in the caregiver intervention literature: that caregivers experience stress in their relationship with the care- recipient but do not find existing approaches helpful in learning how to cope with this stress. Research questions. The purpose of the present study is to explore the effectiveness o f a new treatm ent approach (Empathic Coping) developed to help dementia caregivers better manage their relationship with the care-recipient by increasing their empathic responding to the care-recipient. Although the focus o f the intervention is the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 39 dyadic relationship, the caregiver is considered the primary target for regulating the relationship given the care-recipient’s reduced capacities. This intervention was compared to standard information/support groups. The study posed the following research questions and tested the corresponding hypotheses in a sample o f dementia caregivers: 1) Question 1. Are there differential benefits between the Empathic Coping and Information/Support groups? This question has three components: (a) Are Empathic Coping groups more effective than standard Information/Support groups in increasing caregivers’ empathy and effectiveness in coping with the changing nature o f their relationship with the care-recipient? (b) Are standard Information/Support groups more effective than Empathic Coping groups in increasing effectiveness in coping with stresses not specific to the relationship with the care-recipient? (c) Are Empathic Coping and Information/Support groups equally effective in reducing general psychological distress and increasing well-being? The three questions were evaluated by the following three primary hypotheses (la , 2a, 3) and tw o exploratory hypotheses (lb , 2b). Exploratory hypotheses were used to examine the effectiveness o f specific coping strategies with specific stressors that were not primary targets o f the respective interventions. Study hypotheses are listed in Table 1. Hypothesis la . It was hypothesized that caregivers in the Empathic Coping group will show greater change than caregivers in the Information/Support group on the following variables: increased dispositional empathy (greater perspective-taking and empathic concern, less personal distress); increased Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. Table 1 STUDY HYPOTHESES HYPOTHESES HYPOTHESIS la A t post-test, caregivers in the EC group, in comparison to caregivers in the IS group, will show increased em pathy (greater perspective taking, and empathic concern, less personal distress); increased frequency of empathic coping; increased frequency of acceptance coping with stress in the relationship with the care- recipient; higher caregiving satisfaction and caregiving com petence and; lower dyadic relationship strain HYPOTHESIS lb A t post-test, caregivers in the EC group, in com parison to caregivers in the IS group, will show increased frequency of instrumental coping with stress in the relationship with the care-recipient; and decreased frequency of wishfulness coping and intrapsychic coping with stress in the relationship with the care-recipient HYPOTHESIS 2a A t post-test, caregivers in the IS group, in comparison to caregivers in the E C group, will show increased frequency of instrumental coping with stress from management of household tasks and participation in social activities; low er fam ily relationship strain; and less social activity restrictions HYPOTHESIS 2b A t post-test, caregivers in the IS group, in comparison to caregivers in the EC group, will show increased frequency of acceptance coping with stress from management of household tasks and participation in social activities; and decreased frequency of wishfulness and intrapsychic coping with stress from m anagem ent of household tasks and participation in social activities HYPOTHESIS 3 A t post-test, caregivers in both the E C and IS group will show low er psychological distress, less negative affect and increased positive affect (well-being) HYPOTHESIS 4 A t baseline, regardless of group m embership, caregivers’ quality of past relationship with the care-recipient, orientation towards relationships, and dispositional em pathy (perspective-taking, empathic concern and personal distress) will predict caregivers’ baseline empathic coping. Specifically, there will be a positive relationship betw een empathic coping and quality of past relationship with the care-recipient, communal orientation, perspective-taking and empathic concern; there will be an negative relationship between empathic coping and personal distress and exchange orientation 5 (a) frequency o f empathic coping; increased frequency o f acceptance with stress in the relationship with the care-recipient; higher satisfaction and competence w ith caregiving and; lower strain in their relationship with the care-recipient. (bl Hypothesis lb. It was hypothesized that caregivers in the Empathic Coping group will show greater change than caregivers in the Information/Support group on the following variables: increased frequency o f instrumental coping (e.g. making a plan o f action to handle the situation) with stress in the relationship with the care-recipient; decreased frequency o f wishfulness (e.g., wishing the situation were different) and intrapsychic coping (e.g., having fantasies that situation would be different) with the relationship with the care- recipient. (c) Hypothesis 2a. It was hypothesized that caregivers in the Information/Support group will show greater change than caregivers in the Empathic Coping group on the following variables: increased frequency o f instrumental coping with stress related to management o f household responsibilities and participation in social activities; less strain from restrictions in social activities and less strain in their relationship with other family members. (d! Hypothesis 2b. It was hypothesized that caregivers in the Information/Support group will show greater change than caregivers in the Empathic Coping group on the following variables: increased frequency o f acceptance with stress related to management o f household responsibilities and participation in social activities; decreased frequency o f intrapsychic and wishfolness coping with Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. stress related to management o f household responsibilities and participation in social activities. f e ~ > Hypothesis 3. It was hypothesized that caregivers in both Empathic Coping and Information/Support groups will show similar change on the following variables: lower psychological distress, less negative affect and increased well being (positive affect). 2) Question 2. Are there certain characteristics o f caregivers that predict empathic coping at baseline? That is, is empathic coping influenced by (a) quality o f the caregivers’ premorbid relationship with the care-recipient, (b) caregivers’ orientation tow ards relationships and (c) caregivers’ dispositional empathy? This question was evaluated by the following hypothesis: (a) Hypothesis 4. It was hypothesized that, at baseline, regardless o f group, premorbid relationship with the care-recipient, communal and exchange orientation towards relationships, and dispositional empathy (perspective- taking, empathic concern and personal distress (meaning, feeling personally distressed when seeing someone else who is in distress) would predict caregivers’ empathic coping at baseline. Specifically, a positive relationship was expected between premcrbid relationship with the care-recipient, communal orientation, perspective-taking empathic concern and empathic coping; an inverse or negative relationship was expected between personal distress, exchange orientation and empathic coping. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 43 EXPERIMENTAL DESIGN AND METHODS Experimental Design This study used a quasi-experimental pretest-posttest comparison group design. An experimental group (Empathic Coping) and a comparison group (Information/Support) o f caregivers were evaluated before and after the respective intervention to provide a between-subjects pre-post comparison. The Empathic Coping (EC) group was time- limited and the Information/Support (IS) group was open-ended. Assignment to the groups was not random. Eligible participants were assigned to the Empathic Coping group until the group was filled and then they were assigned to the Inform ation/Support group. This type o f assignment was done to reduce risk o f dropout by minimizing the amount o f time caregivers would have to wait between contact with the principal investigator and start o f the group, given that the Empathic Coping groups had to be filled before they started. This strategy has been adopted in other caregiver intervention studies (e.g., M oniz-Cook, Gibson, Win & Wang, 1998). In addition, after the Empathic Coping groups w ere filled, recruitment into two additional Information/Support groups continued, in order to increase the number o f Information/Support participants in the evaluation. M ethods Procedures Recruitment. The recruitment phase o f the project was from March, 1998 to April, 1999. During this period, press releases were run, repeatedly, in 13 papers in the greater Los Angeles area. Flyers were posted at 49 senior centers/community centers, one senior housing complex, two mental health counseling centers, 10 adult day care centers Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 44 and eight churches. These sites were chosen because they were in the vicinity o f the sites hosting the intervention groups. Newspapers local to the targeted communities were chosen (with the exception o f the Los Angeles Times) in an effort to reach caregivers near the sites where the groups were offered. O f these local newspapers, tw o with primarily Black audiences were selected in an effort to reach Black caregivers. Eight professional organizations sent mass mailings to their client and provider base and/or included a description o f the study in their respective newsletters; these organizations included diagnostic treatment centers, caregiver information and referral organizations, hospital senior programs, the LA County Departm ent o f Mental Health, Older Adult Services Division and, local city park and recreation departments. Information about the study was presented at meetings o f tw o chapters o f the Employee Assistance Professional Association (EAPA) and at community aging network meetings. In addition, contacts at nine hospitals were informed about the group and asked to add the study groups to their list o f referrals. Potential participants were screened over the phone to determine whether or not they met inclusion criteria. Criteria for inclusion in the study were: (1) being an informal, primary caregiver for an individual with a progressive, irreversible dementia (e.g. Alzheimer’s disease, multi-infarct or mixed dementia), (2) having regular contact (at least weekly) with the care-recipient and primary responsibility for care arrangements and (3) not having participated in more than six sessions o f a caregiver support group in the past. To make allowances for caregivers whose care-recipient was still undergoing diagnostic evaluation (or who limited access to health care and diagnostic procedures), care- Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 45 recipients were not required to have been given a formal diagnosis. However, the care- recipients’ symptoms and level o f impairment (per caregiver report) had to be consistent with dementia. Caregivers were not required to be living with the care-recipient because caregivers experience stress associated with caregiving regardless o f living arrangement with the care-recipient (Pratt, Schmall, W right & Cleland, 1985; Pruchno & Kleban, 1993; Stephens, Kinney, & Ogrocki, 1991; Stephens, Ogrocki, & Kinney, 1991). Caregivers were included if they had as many as six sessions o f prior group experience because locating caregivers who have never attended a caregiver support group is difficult (Haley et al., 1987). For the same reason, caregivers were not excluded if they were receiving, or had received, individual psychotherapy in the past, as long as they were not starting therapy at the same time as the groups. This criterion controlled for the confounding variable o f starting two types o f treatment at the same time. Caregivers who met inclusion criteria received an explanation o f the study. Caregivers were told that the study was designed to evaluate the effectiveness o f different types o f support groups in reducing stress associated with caring for a family member or loved one with dementia. If the caregiver decided to participate in the study, she/he would be assigned to one o f tw o types o f support groups. One type was an ongoing, open-ended group which continually takes new members and the other was a short-term, eight session group that was closed to new members once the group started. The groups differed in that the short term group was more structured than the ongoing group, with the short term group facilitator taking a more active teaching role for part o f each group meeting than the facilitator o f the ongoing group. However, the groups were similar in that they Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 46 both sought to provide coping skills, emotional support and information about the disease. Both groups met twice a month and participation was free for both. Participants would be assigned to the short-term group until it was filled; then they would be assigned to the ongoing group. However, if practical considerations made it impossible for caregivers to participate in the short-term group (e.g. could not make the time o f the meeting), they would be assigned to the ongoing group. All participants assigned to the ongoing group would be asked to make a commitment o f eight sessions. Participants assigned to the short-term group would be referred to other support groups if they wanted to continue after the end o f the Empathic Coping intervention. All participants were asked to complete questionnaires before the first group session and then again after the eight scheduled sessions. Data collection. Pre-test measures and consent forms were sent to caregivers to be filled out by their first group meeting. Post-test measures were mailed to the caregivers after the eighth scheduled session. Measures took approximately one hour to complete. Measures were mailed rather than administered in person in order to reduce the demands on the caregiver. Respondents. One hundred and sixty four people phoned to inquire about the study in response to the newspaper advertisements, flyers, informational letters or referrals. O f these 164, 61 caregivers consented, completed the pre-test measures and started the groups. O f the 61 caregivers who started the groups, 48 completed the groups. The characteristics o f the 103 people who were not enrolled in the study are described in Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 47 this section. The characteristics o f the respondents who were assigned to the groups will be examined in the section under participants. One hundred-three people phoned to inquire about the study but were not enrolled. O f these people, 38 did not meet inclusion criteria. Twenty o f the 38 were not caregivers. Three were looking for treatment for other issues: one person was seeking treatment for depression, one person was seeking assistance for subjective memory complaints and the third was seeking treatment for coping with her own diagnosis of dementia. All three people were given appropriate referrals. An additional fifteen people were professionals looking for referrals or general information about the groups. Among these 15, there were six certified nursing assistants, three board and care or skilled nursing facility operators, an elder law attorney, a social worker, a clinical psychologist, a public broadcaster and two business owners. Finally, one person called because she wanted to make a donation in the name o f her former employer who had Alzheimer’s disease and another person was interested in volunteering with the groups. Of the remaining 18 people who did not meet inclusion criteria, six were caregivers caring for someone who was not demented: three were caring for recipients who had cognitive impairment from a traumatic brain injury, one was caring for a recipient with progressive supranuclear palsy (but who had minimal cognitive impairment at the time of screening) and two were caring for recipients with schizophrenia. Six others had attended more than six support group meetings and one was a long-distance caregiver who did not have regular contact with the care-recipient. Finally, four people were excluded due to concerns about their capacity to share equally in the group and to allow other members a Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 48 chance to participate. Individual psychotherapy was considered more appropriate for these individuals and they were referred to low fee mental health care clinics in the Los Angeles area and given information on other caregiver resources in their area. Another person was excluded due to concerns about the appropriateness o f a support group for meeting her needs, that is, she was interested more in serving as a formal patient advocate than as being a support group participant. O f the remaining 65 potentially eligible participants, seven were not contacted because they left a number that was incorrect or out o f service. Nine people were contacted but never returned the primary investigator’s telephone calls. Eighteen individuals changed their mind about wanting to participate in a support group between the time that they made the initial call and, either phone contact with the primary investigator or, start o f the group. Reasons for a change o f mind included death o f the care-recipient, a recently stable caregiving situation, competing demands on their time and, illness. Six people wanted information about other services (e.g. in-home help, educational series/workshops, legal advice). Appropriate referrals were made. Twelve people wanted a support group closer to home and were referred to other support groups. One individual was calling to refer her mother. Three caregivers could not participate for logistical reasons (lack of transportation or no one to stay with the care-recipient while the caregiver attended the group). Home health care and day care referrals were made for these individuals. Finally, six individuals never attended the group after it was set up for them and three attended the Information/Support groups but never sent in the pre-test assessment packet. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 49 Sociodemographic characteristics o f caregivers enrolled in the study Sociodemographic information is reported in Tables 2A-4B. Total sample at baseline Sixty-one caregivers were enrolled in the study, with 31 in the Empathic Coping group and 30 in the Information/Support group. As shown in the far right column o f Table 2 A, caregivers in the Empathic Coping and Information/Support groups were comparable in terms of education, sex, ethnicity, marital status, employment status, income, whether or not they lived with the care-recipient or were receiving some form of assistance with caregiving, and duration o f caregiving. As shown in the far right column o f Table 2B, the groups also were comparable on the care-recipient’s age, education sex, ethnicity, residence and diagnosis. However, the groups differed on caregiver age [t (60) = -2.39, p = .02], caregiver kin relationship to the care-recipient [X2 , (1, N = 58) = 6.91, p = .009], care-recipient’s marital status [X2, (1, N = 61) = 7.28, p = .007] and, on care-recipient degree o f impairment [t (58) = -1.96, p = .055]. Specifically, in comparison to the caregivers in the Information/Support group, caregivers in the Empathic Coping group were caring for care-recipients who were less likely to be married (EC, 65% tiot married; IS, 30% not married) and for less impaired care-recipients (EC, x = 6.53, std = 3.13; IS, x = 8.39, std = 4.05). The Empathic Coping group also had a greater proportion of adult children whereas the Information/Support group had a greater proportion o f spouses. The fact that there were more adult children than spouses in the Empathic Coping group explains the between-group differences in caregiver age (EC, x = 58.23, std = 13.44; IS, x = 66.45, std = 13.14) and care-recipient marital status. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 2A SOCIODEMOGRAPHIC CHARACTERISTICS OF CAREGIVERS FOR ENTIRE SAMPLE BY GROUP ASSIGNMENT EMPATHIC COPING INFORMATION / TOTAL SUPPORT Completers (n=26) Non- Completers (n=5) Completers (n=19) Non- Completers (n=ll> Empathic Coping (n=31) Information / Support (n=30) AGE x = 57.23 x = 63.40 t = -0.94 x = 66.16 x = 67,00 t = -0.16 x = 58.23 x = 66.45 t = -2.39* std = 13.70 std= 11.93 std = 13.20 std = 13.72 std = 13.44 std = 13.14 EDUCATION (years) x = 14.85 x= 13.00 t = 1.76 x= 15.05 x = 13.00 t = 1.82 x = 14.60 x = 14.56 t = 0.06 std = 1.87 std = 2.58 std = 2.22 std = 2,97 std = 2.03 std = 2.52 RELATIONSHIP TO RECIPIENT Spouse 7 2 Fisher's 13 7 Fisher’s 9 20 X 2 = 6.91** Adult Child 16 3 Exact 6 4 Exact 19 10 Other 3 0 p = 1.00 0 0 p = 1.00 3 0 SEX Fisher’s Fisher’s Female 20 4 Exact 16 8 Exact 24 24 X2 = 0.06 Male 6 1 p= 1.00 3 3 p = 0.64 7 6 ETHNICITY Caucasian 15 3 Fisher’s 11 7 Fisher’s 18 18 % 2 = 0.05 African-American 7 1 Exact 6 1 Exact 8 7 Asian 2 1 •o n i 0 1 p = 0.28 3 1 Latino 1 0 1 1 1 2 Native-American 0 0 0 1 0 1 Multi-Racial 1 0 1 0 1 1 MARITAL STATUS Married/Partnered 17 4 Fisher’s 14 9 Fisher’s 21 23 X 2 = 0.60 Divorced/Separated 5 1 Exact 3 1 Exact 6 4 Widowed 2 0 p= 1.00 0 0 p= 1.00 2 0 Never Married 2 0 2 1 2 3 o Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 2A (cont.) SOCIODEMOGRAPHIC CHARACTERISTICS OF CAREGIVERS FOR ENTIRE SAMPLE B Y GROUP ASSIGNMENT EMPATHIC COPING INFORMATION / TOTAL ____________________________________________________________________SUPPORT________________________________________ Completers Non- Completers Non- Empathic Information Completers Completers Coping / Support ______________________________ (n=26) (n=5)________________(n=19) (n=ll)_______________ (n=31) (n=30) 7 7 % 2 = 0.02 EMPLOYMENT STATUS Employed, full time Employed, part time Unemployed Homemaker On leave Retired, not working Retired, work parttime (nmiss) INCOME < 125,000 $25,001 - $45,000 $45,001 -$65,000 $65,000 + (n miss) HOUSEHOLD MEMBERS Recip., no other Recip., some other No recip., some other Lives alone (nmiss) 6 1 Fisher’s 3 0 Exact 3 0 p = 1.00 2 2 1 1 8 0 3 1 8 2 Fisher’s 5 2 Exact 2 0 p = 0.59 7 0 (4) (1) 13 3 6 1 6 0 1 1 3 4 Fisher’s 0 0 Exact 3 0 p= 1.00 4 1 0 0 4 4 5 1 0) 8 4 Fisher’s 3 4 Exact 2 0 p = 0.57 5 2 (1 ) (1 ) 11 4 3 3 1 0 4 2 (2) 3 0 3 3 4 5 2 0 8 8 4 6 (1 ) 10 12 Fisher’s 7 7 Exact 2 2 p= 1,00 7 7 (5) (2 ) 16 15 7 6 6 I 2 6 (2) Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 2A (cont.) SOCIODEMOGRAPHIC CHARACTERISTICS OF CAREGIVERS FOR ENTIRE SAMPLE BY GROUP ASSIGNMENT EMPATHIC COPING INFORMATION/ TOTAL _________________________________________________ SUPPORT Completers (n=26) Non- Completers (n=5) Completers (n=19) Non- Completers (n=l!) Empathic Coping (n=31) Information / Support (n=30) RECEIVING ASSISTANCE One form of assist 13 2 Fisher’s 6 3 Fisher’s 15 9 % 2 = 1.18 Two forms of assist 3 1 Exact 6 0 Exact 4 6 Three forms of assist 1 0 p= 1.00 2 1 p = 0.37 1 3 Four forms of assist 0 0 0 2 0 2 No assist 8 2 5 1 10 6 (n miss) 0 ) (4) 0 ) (4) DURATION OF MONTHS x = 26.36 x = 46.00 t = -1.17 x = 32.53 x = 33.43 t = -0.09 x = 29.63 x = 32.77 t = 0.40 CAREGIVING std = 33.09 std = 20.27 std =24.68 std = 21.03 std = 34.43 std = 23.34 PRIOR SUPPORT GROUP 7 1 Fisher’s 8 5 Fisher’s 8 13 *2 = 2.08 EXPERIENCE (Yes) Exact Exact p= 1.00 p= 1.00 RECEIVING OR RECEIVED 5 0 Fisher’s 3 6 Fisher’s 5 9 X2= 1-86 PSYCHOTHERAPY (Yes) Exact Exact p = 0,56 p = .03* *p < .05; < .01 Chi-square and Fisher’s Exact Test performed on the following collapsed categories: spouse/adult child; Caucasian/African-American-American/other; married/not married; employed/not employed; others in household besides care-recipient/no others; receiving some form of assistance/receiving no assistance; prior group experience/no prior group experience; therapy/no therapy K > Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 2B SOCIODEMOGRAPHIC CHARACTERISTICS OF CARE-RECIPIENTS FOR ENTIRE SAMPLE BT GROUP ASSIGNMENT EMPATHIC COPING INFORMATION/SUPPORT TOTAL Completers (n=26) Non- Completers (n=5) Completers (n=19) Non- Completers (n=I I) Empathic Coping (n-31) Information / Support (n~30) AGE x = 78.12 std “ 8.81 x = 81,00 std = 7.52 t = -0.68 x = 78.94 std “ 8.22 x = 76.45 std = 9.48 t “ 0.74 x “ 78.60 std -8.56 x - 78.00 std“ 8.64 t- 0.27 EDUCATION (years) x “ 13.73 std “ 3.44 X“ 13.20 std - 2.68 t = 0,32 x= 13.37 std “ 8.22 X“ 11.30 std “ 3.24 t “ 1.50 x = 13,63 std “ 3.27 X - 12.74 std= 3.44 t-0.97 RELATIONSHIP TO CAREGIVER Spouse Parent Other 7 16 3 2 3 0 FiAcrt Exact p ■ 1.00 13 6 0 7 4 0 Filbert Exact p ■ 1.00 9 19 3 20 10 0 X 2-6.9I« SEX Female Male 20 6 2 3 Firitcrt Exact p = O.I3 10 9 6 5 Filbert Exact p = 1,00 22 9 16 14 X 2 - 2.81 *p < .05; ••pc.O l Chi-square and Fisher’ s Exact Test performed on the following collasped categories: spouse/adult child; Caucasian/African-Amcrican/Other, marricd/not married, live with caregiver/does not live with caregiver, Alzheimer's disease/VaD-MED/other Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 2B (cont.) SOCIODEMOGRAPHIC CHARACTERISTICS OF CARE-RECIPIENTS FOR ENTIRE SAMPLE BY GROUP ASSIGNMENT EMPATHIC COPING INFORMATION/SUPPORT TOTAL Completers (n=26) Non- Completers (n=5) Completers (n=19) Non- Completers (n°l 1) Empathic Coping (n-31) Information / Support (n-30) ETHNICITY Caucasian African-American Asian Latino Native-American Multi-Racial IS 8 2 1 0 0 . Filbert Exact p ■ 1.00 1 1 0 0 0 11 6 0 2 0 0 , Filbert Exact 6 p ■ 0,52 2 0 1 1 0 18 9 3 1 0 0 17 8 0 3 1 0 Filbert Exact p-1.00 MARITAL STATUS M arried/Partnered Divorced/Separated Widowed Never M arried 9 5 1 1 1 _ Filbert Exact p “ 1.00 0 3 0 14 2 3 0 - Fiihcrt Exact p = 0.69 1 3 0 1 1 5 14 1 21 3 6 0 3(2 • 7,28»» *P < 05;**p< 01 Chi-square and Fisher’ s Exact Test performed on the following collaspcd categories: spouse/adult child; Caucasian/African-American/Other, married/not married, live with caregiver/does not live with caregiver, Alzheimer’ s disease/VaD-MID/othcr $ Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 2B (cont.) SOCIODEMOGRAPHIC CHARACTERISTICS OF CARE-RECIPIENTS FOR ENTIRE SAMPLE BY GROUP ASSIGNMENT EMPATHIC COPING INFORMATION/SUPPORT TOTAL Completers Non- Completers Completers Non- Completers Empathic Coping Information / Support (n=26) (n=5) (n“ 19) (n=ll) (n=31) (n=30) RESIDENCE With Caregiver 19 4 FMwr’ t Exact p = 1,00 14 9 Fiihct'i Exact p - 1.00 23 23 *2-0.05 Another Relative 1 0 I 0 1 1 Board & Care / Assisted Living 2 0 1 0 2 1 Independently in Community 3 1 1 1 4 2 Nursing Home 1 0 2 1 1 3 DIAGNOSIS Alzheimer's Disease II 5 Fiiher'i Exact p = 0.08 II 8 Fiiher'i Exact p = 0,72 16 19 Fiiher'i Exact p = 0.J4 Multi-Infect / Vascular 5 0 2 0 5 2 Mixed 0 0 2 0 0 2 Unknown / Other 10 0 4 3 10 7 BLESSED DEMENTIA RATING SCALE x = 6.05 std = 2.63 X = 8.97 std = 4.55 t = -2.00* x = 8.87 std - 3.83 x = 7.52 std = 4.47 t = 0.84 x = 6.53 std “ 3.13 x = 8.39 std= 4.05 f-1.96* •p < .05; **p < .01 Chi-square and Fisher’ s Exact Test performed on the following collasped categories: spouse/adult child; Caucasian/African-American/Other; married/not married, live with caregiver/does not live with caregiver, Alzheimer's diseasc/VaD-MID/other 56 Caregivers not completing the study. O f the sixty-one caregivers who were enrolled in the study, 16 dropped out (non-completers), reflecting a 26% dropout rate. This rate is comparable to the 15%-30% rates observed in most caregiver intervention studies. Caregivers who withdrew were given referrals when appropriate. Five caregivers dropped out o f the Empathic coping Group (16%) and the remaining 11 caregivers dropped out o f the Information/Support group (37%). This difference was not statistically significant [X2 , (1, N = 61) = 3.23, p = .068] but was clinically meaningful. The dropout rate for the Information/Support groups was more than twice that o f the Empathic Coping groups and seems to reflect higher discontent with the groups, as suggested in the reasons for dropping. Caregivers in the Empathic Coping group dropped out for the following reasons: one caregiver left after the first group meeting because he had just placed his mother in a nursing home and no longer perceived a need for the group. A second caregiver dropped out after two group meetings due to a change in her work schedule. She was given a referral to a support group that met during the evening. Two caregivers stopped attending after three and four sessions, respectively, because their care-recipients became very ill and required increasing attention. A fifth caregiver was killed by her husband (not the care- recipient) after the sixth session. Caregivers dropped out of the Information/Support groups for the following reasons: two caregivers dropped out after their first session and, a third dropped out after her third session, due to a reported lack o f time to participate in the group. One caregiver Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 57 dropped out between enrollment and the first session due to a combination of time constraints and health problems. Three caregivers dropped out after one, two and three sessions respectively, reporting that they did not find the group helpful. Three caregivers withdrew after their first, fourth and eighth sessions, respectively, because the care- recipient died. (The caregiver withdrawing after the eighth session declined to complete the post-test measures). In addition, one caregiver did not drop out o f her group but dropped out o f the study; she did not fill out the post-test measures, stating that she was too sick and emotionally drained to fill them out. Caregivers not completing the study vs. caregivers completing the study. In order to evaluate the possible effects o f selective attrition, non-completers were compared to completers on sociodemographic variables. This analysis was performed collapsed across groups and within each group. Among caregivers, as indicated in the far right column of Table 3A, when collapsed across groups, non-completers did not differ from completers on caregiver age, relationship to the care-recipient, sex, ethnicity, marital status, employment status, income, whether or not they lived with the care-recipient or were receiving some form o f assistance with caregiving, or duration caregiving. However, non completers were slightly less educated [t (SS) = 2.59, p = .012 ] than completers. Among care-recipients, as indicated in the far right column o f Table 3B, when collapsed across groups, non-completers and completers were comparable all sociodemographic characteristics. Within-group comparisons are shown in the first two columns o f Table 2 A for caregivers and Table 2B for care-recipients. (See column one for Empathic Coping group Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. Table 3A SOCIODEMOGRAPHIC CHARACTERISTICS OF CAREGIVERS FOR ENTIRE SAMPLE BY DROPOUT STATUS COMPLETERS NON-COMPLETERS TOTAL Empathic Information Empathic Information Completers Non- Coping /Support Coping /Support Completers (n=26) (n=19) (n=5) (n=ll) <n=45) (n=16) AGE x = 57.23 x = 66.16 t = -2.19* x = 63.40 x = 67.00 t = -0.50 x = 61.00 x = 65.80 I = -1.17 std = 13.70 std = 13.20 std = 11.93 std= 13.72 std= 14.07 std= 12.84 EDUCATION (years) x= 14.85 x= 15.05 t = -0.33 x= 13.00 x = 13.00 t = 0.00 x = 14.93 x= 13.00 t = 2.59** std = 1.87 std = 2.22 £ II Ul 00 std = 2.97 std = 2.00 std = 2.67 RELATIONSHIP TO RECIPIENT Spouse 7 13 X 2 = 6.02« 2 7 Fisher’s 20 9 X 2 = 0.35 Adult Child 16 6 3 4 Exact 22 7 Other 3 0 0 0 p = 0.60 3 0 SEX Fisher’s Female 20 16 X 2 = 0.36 4 8 Exact 36 12 Fisher’s Male 6 3 1 3 p= 1.00 9 4 Exact p = 0.73 ETHNICITY Caucasian 15 1 1 Fisher’s 3 7 Fisher’s 26 10 Fisher’s African-American 7 6 Exact 1 1 Exact 13 2 Exact Asian 2 0 p = 1.00 1 1 p= 1.00 2 2 p = 0.31 Latino 1 1 0 1 2 1 Native-American 0 0 0 1 0 1 Multi-Racial 1 1 0 0 2 0 MARITAL STATUS Married/Partnered 17 14 X 2 = 0.35 4 9 Fisher’s 31 13 Fisher’s Divoiced/Separated 5 3 1 1 Exact 8 2 Exact Widowed 2 0 0 0 p= 1.00 2 0 p = 0.52 Never Married 2 2 0 1 : 4 'W 1 l/l 0 0 Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 3A (cont.) SOCIODEMOGRAPHIC CHARACTERISTICS OF CAREGIVERS FOR ENTIRE SAMPLE B Y DROPOUT STATUS COMPLETERS NON-COMPLETERS TOTAL Empathic Information Empathic Information Completers Non- Coping / Support Coping /Support Completers (n=26) (n=19) (n=5) (n=l 1) (n=45) (n=16) MARITAL STATUS Married/Partnered 17 14 % 2 = 0.35 4 9 Fisher’s 31 13 Fisher’s Divorced/Separated 5 3 1 1 Exact 8 2 Exact Widowed 2 0 0 0 p= 1.00 2 0 p = 0.52 Never Married 2 2 0 1 4 1 EMPLOYMENT STATUS Employed, full time 6 3 X 2 = 0.07 1 4 Fisher’s 9 5 X2=0.00 Employed, pari time 3 0 0 0 Exact 3 0 Unemployed 3 3 0 0 p= 1.00 6 0 Homemaker 2 4 2 1 6 3 On leave 1 0 1 0 1 1 Retired, not working 8 4 0 4 12 4 Retired, work pailtime 3 5 1 1 8 2 (n miss) (1) 0 ) INCOME < $25,000 8 8 Fisher’s 2 4 Fisher's 16 6 Fisher’s $25,001 -$45,000 5 3 Exact 2 4 Exact 8 6 Exact $45,001 - $65,000 2 2 p = 0.94 0 0 p= 1.00 4 0 p = 0.28 $65,000 + 7 5 0 2 12 2 (n miss) (4) (1) (1) (I) (5) (2) HOUSEHOLD MEMBERS Recip., no other 13 1 1 3 4 24 7 Recip., some other 6 3 1 3 9 4 No recip., some other 6 1 0 0 7 0 Lives alone 1 4 1 2 5 3 (n miss) (2) (2) l / l SO Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. Table 3A (cont.) SOCIODEMOGRAPHIC CHARACTERISTICS OF CAREGIVERS FOR ENTIRE SAMPLE BY DROPOUT STA TUS COMPLETERS NON-COMPLETERS TOTAL Empathic Coping (n=26) Information / Support (n=19) Empathic Coping (n=5) Information / Support (n=ll) Completers (n=45) Non- Completers (n=16) RECEIVING ASSISTANCE One form of assist 13 6 *2 = 0.11 2 3 Fisher’s 19 5 Fisher’s Two forms of assist 3 6 1 0 Exact 9 1 Exact Three forms of assist 1 2 0 1 p = 0.21 3 1 p = 0.52 Four forms of assist 0 0 0 2 0 2 No assist 8 5 2 1 13 3 (n miss) (1) (4) (1) (4) DURATION OF MONTHS x = 26.36 x = 32.53 t = -0.68 x = 46.00 x = 33.43 t = 0.71 x = 29.02 x = 38.67 t = -1.00 CAREGIVING std = 33.09 std = 24.68 std = 40.27 std = 21.03 std = 29.59 std = 29.55 PRIOR SUPPORT GROUP 7 8 *2=1.14 1 5 Fisher’s 15 6 *2 = 0.09 EXPERIENCE Exact p = 0,59 RECEIVING OR RECEIVED 5 3 Fisher’s 0 6 Fisher’s 8 6 *2 = 3.12 PSYCHOTHERAPY Exact Exact p= 100 P = 0.04* *p< .05; **p< 01 Chi-square and Fisher’s Exact Test performed on the following collapsed categories: spouse/adult child; Caucasian/African-American-American/other; married/not married; employed/not employed; others in household besides care-recipient/no others; receiving some form of assistance/receiving no assistance; prior group experience/no prior group experience; therapy/no therapy O n o Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. Table 3D SOCIODEMOGRAPHIC CHARACTERISTICS OF CARE-RECIPIENTS FOR ENTIRE SAMPLE BY DROPOUT STA TUS COMPLETERS NON-COMPLETERS TOTAL Empathic Coping Information /Support Empathic Coping Information /Support Completers Non- Completers (n=26) (n=!9) (n=5) (n=ll) (n=45) (n=16) AGE x = 78.12 std = 8.81 x = 78.94 std = 8.22 t = -0.31 X = 81.00 std = 7.52 x = 76.45 std = 9.48 t = 0.94 x = 78.47 std = 8.47 x = 77.88 std= 8.93 t = 0.23 EDUCATION (years) x= 13.73 std = 3.44 x= 13.37 std = 8.22 t = 0.33 x= 13.20 std = 2.68 x= 11.30 std =3.24 t = 1.12 x= 13.56 std = 3.38 x= 12.00 std= 3.08 t= 1.48 RELATIONSHIP TO CAREGIVER Spouse 7 13 X 2 = 6.02** 2 7 Fisher's Exact p = 0.60 20 9 *2 = 0.35 Parent 16 6 3 4 22 7 Other 3 0 0 0 3 0 SEX Female 20 10 *2 = 4.19* 2 6 Fisher’ s Exact p = 1.00 30 8 *2=1.03 Male 6 9 3 5 15 8 •p < .05; **p<,01 Chi-square and Fisher's Exact Test performed on the following collasped categories: spouse/adult child; Caucasian/African-American/Other, married/not married, live with caregiver/does not live with caregiver, Alzheimer's disease/VaD-MID/other Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 3B (cont.) SOCIODEMOGRAPHIC CHARACTERISTICS OF CARE-RECIPIENTS FOR ENTIRE SAMPLE BY DROPOUT STA TVS COMPLETERS NON-COMPLETERS TOTAL Empathic Information Empathic Information Completers Non- Coping /Support Coping /Support Completers (n=26) (n=l9) (n=5) (n=ll) (n=45) (n=16) ETHNICITY Caucasian 15 . . Fisher's Exact 3 , Fisher's Exact 26 9 Fisher’ s Exact p= 1.00 p = 1,00 p “ 0.36 African-American 8 6 1 2 14 3 Asian 2 0 1 0 2 1 Latino 1 2 0 1 3 1 Native-American 0 0 0 1 0 1 Multi-Racial 0 0 0 0 0 0 (n miss) (1) (1) MARITAL STATUS Married/Partnered 9 14 x2 = 67t** 2 _ Fisher's Exact ' p = 0,60 23 9 *2=0.13 Divorced/Separated 5 2 0 1 7 1 Widowed 1 1 3 3 3 14 6 Never Married 1 0 0 0 1 0 *p < .05; **p < .01 Chi-square and Fisher’s Exact Test performed on the following collasped categories: spouse/adult child; Caucasian/African-American/Other, married/not married, live with caregiver/does not live with caregiver, Alzheimer's disease/VaD-MID/other Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 3B (cont.) SOCIODEMOGRAPHIC CHARACTERISTICS OF CARE-RECIPIENTS FOR ENTIRE SAMPLE BY DROPOUT STA TUS COMPLETERS NON-COMPLETERS TOTAL Empathic Coping (n=26) Information /Support (n=19) Empathic Coping (n=5) Information /Support (n=ll) Completers (n=45) Non- Completers (n=16) RESIDENCE With Caregiver Another Relative Board & Care / Assisted Living Independently in Community Nursing Home 19 1 2 3 1 14 1 1 1 2 X2 = 0.02 4 0 0 1 0 9 0 0 1 1 Fisher's Exact p= 1.00 33 2 3 4 3 13 0 0 2 1 Fisher's Exact p " 0.74 DIAGNOSIS Alzheimer's Disease Multi-Infect / Vascular Mixed Unknown / Other 11 5 0 10 11 2 2 4 Fuller's Exact p = 0.36 5 0 0 0 8 0 0 3 Fisher's Exact p = 0.5l 22 7 2 14 13 0 0 3 Fisher's Exact p = 0,058 BLESSED DEMENTIA RATING SCALE x = 6.05 std = 2.63 x = 8.87 std = 3.83 t = -2.69** x = 8.97 std = 4.55 x = 7.52 std = 4.47 1 = 0.59 x = 7.23 std = 3.45 x = 8.00 std= 4.39 t= -0.70 • p <.05; ••pc.O I Chi-square and Fisher's Exact Test performed on the following collasped categories: spouse/adult child; Caucasian/African-American/Other, married/not married, live with caregiver/does not live with caregiver, Alzheimer’s disease/VaD-MID/other 64 and column two for Information/Support group). Within the Empathic Coping group, non-completers were comparable to completers on all sociodemographic variables except the care-recipient’s level o f impairment [t (31) = 2.00, p = .05 ]. In comparison to completers, non-completers were caring for a more impaired care-recipient. Within the Information/Support group, non-completers were comparable to completers on all sociodemographic variables except receipt o f current or past psychotherapy [Fisher’s Exact test, p = .032], with a greater proportion o f non-completers than completers receiving or having received psychotherapy. Next, in order to evaluate whether or not attrition characteristics were distributed differentially between the Empathic Coping and Information/Support groups, the non completers from both groups were compared. (See column two, Table 3 A for caregivers and, column two, Table 3B, for care-recipients). As indicated in Tables 3 A and 3B, non completers in both groups were comparable on all sociodemographic variables with the exception o f whether or not caregivers’ were receiving or had received psychotherapy. All the non-completers in the Information/Support group were receiving or had received psychotherapy in the past whereas none o f the non-completers in the Empathic Coping group were receiving, or had received, psychotherapy [Fisher’s Exact test, p = .04]. Caregivers completing the study. Next, completers in both groups were compared to evaluate the comparability o f the two groups at baseline. O f the 45 caregivers who completed the groups, 26 were in the Empathic Coping group and 19 were in the Information/Support group. (See column one, Table 3 A for caregivers and, column one, Table 3B, for care-recipients)- As shown in Tables 3 A caregivers who completed the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 65 Empathic Coping group and caregivers who completed the Information/Support group were comparable in terms o f education, sex, ethnicity, marital status, employment status, income, whether or not they lived with the care-recipient or were receiving some form of assistance with caregiving, and duration caregiving. As shown in Table 3B, care- recipients were comparable on the care-recipient’s age, education, ethnicity, residence and diagnosis. However, consistent with the differences seen in the entire sample o f enrolled caregivers, the groups were different on caregiver age [t (45) = -2.19, p = .033], caregiver kin relationship to the care-recipient [X2, (1, N = 42) = 6.02, p = .014] and, on care- recipient sex [X2, (1, N = 45) = 4.19, p = .041], care-recipient marital status [X2, (1, N = 45) = 6.71, p = .010] and level o f impairment [t (43) = -2.69, p = .011], The groups also differed on attendance [t (45) = 2.11, p = .046], with caregivers in the Empathic Coping group attending an average o f 6.3 sessions out o f 8 (SD = 1.4) whereas caregivers in the Information/Support group attended an average of 4.8 sessions out o f 8 (SD = 2.8). Because these group differences might be explained by differences within groups on the distribution o f kin relationship (adult child or spouse), an additional across groups comparison was performed to examine whether adult children were comparable in both groups and whether spouses were comparable in both groups. The three caregivers who were neither spouses nor adult children were not included in this analysis. Across group comparisons are shown in Tables 4A (caregivers) and 4B (care- recipients). As indicated in the second column o f Table 4A spouses in the Empathic Coping and Information/Support groups differed on level of education [t (20) = -2.49, p = .023] with spouses in the Information/Support group slightly more educated than spouses Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 4A ACROSS GROUP COMPARISON OFADULTCHILD AND SPOUSE CAREGIVERS: COMPLETERS ADULT CHILDREN SPOUSES Empathic Coping (n=16) Information / Support (n=6) Empathic Coping (n— 7) Information / Support (n=13) AGE x = 50.56 std = 10.29 x = 50.50 std = 4.89 t = 0.01 x = 71.14 std= 10.63 x = 73.38 std = 8.51 t = -0.52 EDUCATION (years) x= 15.25 std= 1.73 x = 14.00 std = 2.61 t = 1.31 x= 13.43 std= 1.51 x= 15.54 std = 1.94 t = -2.49* SEX Female Male 12 (75.0%) 4 (25.0%) 6 (100.0%) 0 (0.0%) Fisher's Exact p = 0.54 5 (71.4%) 2 (28.6%) 10 (76.9%) 3 (23.1%) Fisher's Exact p= 1.00 ETHNICITY Caucasian African-American Asian Latino Native-American Multi-Racial 9 (56.3%) 4 (25.0%) 1 (6.3%) 1 (6.3%) 0 (0.0%) 1 (6.3%) 1 (16.7%) 5 (83.3%) 0 (0.0%) 0 (0.0%) 0 (0.0%) 0 (0.0%) Fisher's Exact p = 0.06 4(57.1%) 2 (28.6%) 1 (14.3%) 0 (0.0%) 0 (0.0%) 0 (0.0%) 10 (76.9%) 1 (7.7%) 0 (0.0%) 1 (7.7%) 0 (0.0%) 1 (7.7%) Fisher's Exact p = 0.77 MARITAL STATUS Married/Partnered Divorced/Separated Widowed Never Married 9 (56.3%) 4 (25.0%) 2 (12.5%) 1 (6.3%) 1 (16.7%) 3 (50.0%) 0 (0.0%) 2 (33.3%) Fisher's Exact p = 0.06 7 (100.0%) 0 (0.0%) 0 (0.0%) 0 (0.0%) 13 (100.0%) 0 (0.0%) 0 (0.0%) 0 (0.0%) -------- Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. Table 4A (cont.) ACROSS GROUP COMPARISON OFADVL T CHILD AND SPOUSE CAREGIVERS: COMPLETERS ADULT CHILDREN SPOUSES Empathic Information Empathic Information / Coping /Support Coping Support (n=I6) (n=6) (n=7) (n=13) EMPLOYMENT STATUS Employed, full time 6 (37.5%) 1 (16.7%) Fisher's 0 (0.0%) 2 (15.4%) Fisher's Exact Employed, pait time 3 (18.8%) 0 (0.0%) Exact 0 (0.0%) 0 (0.0%) p = 0,35 Unemployed 2 (12.5%) 3 (50.0%) p = 0.60 0 (0.0%) 0 (0.0%) Homemaker 1 (6.3%) 0 (0.0%) 1 (14.3%) 4 (30.8%) On leave 1 (6.3%) 0 (0.0%) 0 (0.0%) 0 (0.0%) Retired, not working 1 (6.3%) 0 (0.0%) 5 (71.4%) 4 (30.7%%) Retired, work parttime 2(12.5%) 2 (33.3%) 1 (14.3%) 3(23.1%) INCOME < $25,000 3 (9.7%) 4 (66.7%) Fisher's 3 (42.9%) 4 (30.8%) Fisher's Exact $25,001 -$45,000 3 (9.7%) 0 (0.0%) Exact 2 (28.6%) 3 (23.1%) p = 0.92 $45,001 -$65,000 1 (6.3%) 0 (0.0%) p = 0.25 1 (14.3%) 2 (15.4) $65,000 + 5 (31.3%) 1 (16.7%) 1 (14.3%) 4 (30.8%) (n miss) (4) (25.0%) (1) (16.7%) HOUSEHOLD MEMBERS Recip., no other 6 (37.5%) 2 (33.3%) 5(71.4%) 9 (69.2%) Recip., some other 4 (25.0%) 2 (33.3%) 1(14.3%) 1 (7.7%) No recip., some other 5(31.2%) 1 (16.7%) 1(14.3%) 0 (0.0%) Lives alone 1(6.3%) 1 (16.7%) 0 (0.0%) 3(23.1%) RECEIVING ASSISTANCE One form of assist 6 (37.5%) 2 (33.3%) Fisher's 4(57.1%) 4 (30.8%) Fisher's Exact Two forms of assist 3(18.7%) 2 (33.3%) Exact 0 (0.0%) 4 (30.8%) p = 0.65 Three forms of assist 1 (6.3%) 1 (16.7%) p = 0,63 0 (0.0%) 1 (7.6%) Four forms of assist 0(0.0%) 0 (0.0%) 0 (0.0%) 0 (0.0%) No assist 5(31.2%) 1 (16.7%) 3 (42.9%) 4 (30.8%) (n miss) 1(6.3%) Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. Table 4 A (cont.) ACROSS GROUP COMPARISON OF ADULT CHILD AND SPOUSE CAREGIVERS: COMPLETERS ADULT CHILDREN SPOUSES Empathic Coping (n=16) Information / Support (n=6) Empathic Coping (n=7) Information / Support <n=13) DURATION OF MONTHS CAREGIVING x= 18.06 std = 16.74 x = 30.50 std = 20.12 t = -1.46 x = 47.14 std = 54.82 x = 33.46 std = 27.24 t = 0.62 PRIOR SUPPORT GROUP EXPERIENCE (Yes) 3 (18.8%) 1 (16.7%) Fisher's Exact p = 1.00 3 (42.9%) 7 (53.8%) Fisher's Exact p = 1.00 RECEIVING OR RECEIVED PSYCHOTHERAPY (Yes) 3 (18.8%) 0 (0.0%) Fisher's Exact p = 0.53 2 (28.6%) 3 (23.1%) Fisher's Exact p= 1.00 ♦p < .05; " p < .01 Chi-square and Fisher’s Exact Test performed on the following collapsed categories: spouse/adult child; Caucasian/African- American-American/other; married/not married; employed/not employed; others in household besides care-recipient/no others; receiving some form of assistance/receiving no assistance; prior group experience/no prior group experience; therapy/no therapy Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 4B ACROSS GROUP COMPARISON OF CARE-RECIPIENTS OF ADULT CHILD AND SPOUSE CAREGIVERS: COMPLETERS PARENT SPOUSE EMPATHIC INFORMATION/ EMPATHIC INFORMATION/ COPING SUPPORT COPING SUPPORT (n=16) (n=6) (n=7) (n=13) AGE x = 79.87 x = 81.20 t = » -0.32 x = 72.86 x = 78.08 t - -1.35 std = 8.19 std = 8.14 std = 7.93 std = 8.41 EDUCATION (years) x = 13.14 std = 3.72 x= 10.00 std = 3.29 t -1.79 x= 14.33 std = 3.20 x= 14.92 std = 2.14 t * -0.48 SEX Fisher's Fisher's Female 15 (93.8%) 6 (100.0%) Exact p= 1.00 2 (71.4%) 3 (23.1%) Exact p = 1.00 Male 1 (6.2%) 0 (0.0%) 5 (28.6.%) 10 (76.9%) ETHNICITY Fisher's Fisher's Caucasian 9(56.3%) 1 (16.7%) Exact p = 0.15 4(57.1%) 10 (76.9%) Exact p = 0.77 African-American 5 (31.3%) 5 (83.3%) 2 (28.6%) 1 (7.7%) Asian 1 (6.3%) 0 (0.0%) 1 (14.3%) 0 (0.0%) Latino 1 (6.3%) 0 (0.0%) 0 (0.0%) 2 (15.4%) Native-American 0 (0.0%) 0 (0.0%) 0 (0.0%) 0 (0.0%) $ Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. Table 4B (cont.) ACROSS GROVP COMPARISON OF CARE-RECIPIENTS OF ADULT CHILD AND SPOUSE CAREGIVERS: COMPLETERS PARENT SPOUSE EMPATHIC COPING (n=16) INFORMATION/ SUPPORT (n=6) EMPATHIC COPING (n=7) INFORMATION/ SUPPORT (n=13) MARITAL STATUS Fisher's Married 2 (12.5%) 1 (16.7%) Exact 7 (100.0%) 13 (100%) p= 1.00 — Divorced/Separated 4 (25.0%) 2 (33.3%) 0 (0.0%) 0 (0.0%) Widowed 10 (62.5%) 3 (50.0%) 0 (0.0%) 0 (0.0%) Never Married 0 (0.0%) 0 (0.0%) 0 (0.0%) 0 (0.0%) RESIDENCE Fisher's Fisher's Caregiver 10 4 Exact 6 10 Exact p= 1.00 o © I I Q. Another relative 1 1 1 • 0 Board & Care/Assisted living 2 0 0 1 Independently in community 0 0 0 2 Nursing home 3 1 0 0 o Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. Table 4B (cont.) ACROSS GROUP COMPARISON OF CARE-RECIPIENTS OF ADULT CHILD AND SPOUSE CAREGIVERS: COMPLETERS PARENT SPOUSE EMPATHIC INFORMATION / EMPATHIC INFORMATION / COPING SUPPORT COPING SUPPORT (n=16) (n=6) (n=7) (n=13) DIAGNOSIS Fisher's Fisher's Alzheimer’s disease 8 3 Exact p = 1.00 1 8 Exact p = 0.10 Multi-infarct/Vascular dementia 3 1 2 1 Mixed 0 0 0 2 Unknown cause/Other 5 2 4 2 BLESSED x = 5.58 std = 2.44 * 7 1 [ I ] t = -4.97**** std = 2.31 x = 6.48 std = 3.14 x = 7.77 std = 3.89 t - -0.76 ****p < .0001 Chi-square and Fisher's Exact Test performed on the following collapsed categories: Caucasian/Afrlcan-American/other; married/not married; live with caregiver/do not live with caregiver; Alzheimer's disease/VaD-MID/other; 72 in the Empathic Coping group. As indicated in the first column o f Table 4B, adult children in the two groups differed on care-recipient level o f impairment, with caregivers in the Information/Support group caring for care-recipients with a significantly higher level o f impairment [t (21) = -4.97, p = .0001] than care-recipients o f adult child caregivers in the Empathic Coping group. Additionally, there was a borderline significant difference for adult children in the two groups on ethnicity [Fisher’s Exact test, p = .063], with a disproportionately higher percent o f Blacks in the Information/Support group than in the Empathic Coping group. These baseline differences may limit comparisons between the Empathic Coping and Information/Support groups, particularly among adult child caregivers. For example, with respect to baseline differences in ethnicity, a recent review o f empirical studies examining the effect o f race, ethnicity and culture on the experience o f caregiving for a demented care-recipient found that White caregivers generally reported higher levels of caregiver stress, burden and depression, as well as less strongly held beliefs about filial responsibility than non-White caregivers (Connell & Gibson, 1997). (These findings pertain primarily to Black-White comparisons in that 10 o f the 12 studies in the review focused on comparisons between Blacks and Whites; however, this comparison is o f most relevance to the present study given that baseline group differences reflected Black-White differences). However, the authors caution that findings across the studies reviewed were not uniform and thus, racial differences may be a function o f other factors such as socioeconomic, educational or cultural status. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 73 Interventions Settings. The Empathic Coping and Information/Support groups were implemented in three Los Angeles County communities: Gardena, Granada Hills and downtown Los Angeles. The intervention sites were, respectively, an adult day care center, a community hospital and a university-based outpatient clinic. These sites were chosen because facilitators running Information/Support groups at these locations agreed to serve as comparison groups for the study. The decision to hold the Empathic Coping and Information/Support groups at the same location was made to optimize the likelihood that participants in both groups would be similar on sociodemographic characteristics. Two additional comparison groups, including one at a new location, were added midway through the study because the comparison groups at the existing sites were at capacity and could not take new members. One Information/Support group was started at a university-based Alzheimer’s Disease Center in Los Angeles. The second Information/Support group was formed at the same university-based outpatient clinic as an existing Information/Support group. Some o f the caregivers from the Empathic Coping group joined this Information/Support group after their post-test measures were completed but they were not assessed as comparison group subjects. Having these former Empathic Coping group members in the group could have influenced group content and process; however, this effect was likely to be mitigated by the only occasional attendance o f these members. Composition, structure and format. The Empathic Coping groups met for an hour and one-half, twice a month, for a total o f eight sessions. Three groups were run, all led Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 74 by the same facilitator, who was an advanced doctoral-level student and the primary investigator o f this study. Each group contained a mixture o f spouses and adult children (with the exception o f two caregivers who were family friends and one caregiver who was a sister-in-law). The Information/Support groups met twice a month for an hour and one- half or two hours and were ongoing. Six groups in total were run, including the two comparison groups that were added midway through the study. All were led by experienced facilitators, including an occupational therapist, clinical psychologist, social worker with a masters degree in gerontology, registered nurse and advanced clinical psychology doctoral students, social work students or gerontology students. Two o f the six groups had two facilitators. Three groups contained a mixture o f spouses and adult children. Two o f the remaining three groups were for spouses only; one was for spouses and siblings, although no siblings were in the study. (No siblings inquired about the study or were referred). The spouse-only groups were used because, at the time of the intervention, the respective sites only offered these relationship-specific groups. Eleven of the thirteen spouses in the Information/Support groups were in the spouse-only groups which may limit comparisons to spouses in the Empathic Coping group. A spouse only group may be qualitatively different from a mixed group. This point will be explored in the discussion section o f this paper. Treatment fidelity checks (Adherence). Adherence ratings were done by a trained observer, who was blind to the study hypotheses, using a frequency checklist of facilitator behaviors. The rater was trained by the primary investigator using videotapes of groups. Inter-rater reliability between the rater and the primary investigator for ratings o f these Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 75 videotapes was .80. A rating method was chosen because it was minimally invasive and because Information/Support group facilitators did not videotape or audiotape their groups. Furthermore, requesting consent to videotape would have involved asking for consent from group members who were not participants in the study; that is, those members who were in the group prior to the study inception. The facilitator behavior checklist is shown in Appendix A The facilitator behavior checklist was composed o f three types of behaviors: (1) behaviors considered to be characteristic o f the Empathic Coping group but not o f the Information/Support group (e.g. didactics, discussion o f the relationship between caregiver and the care-recipient, discussion o f the care-recipients’ feelings and experiences, modeling and practicing skills), (2) behaviors considered to be characteristic o f the Information/Support group but not o f the Empathic Coping group (e.g., discussion of community resources or services, advice) and (3) behaviors expected in both groups (e.g. warm, not judgmental, observation and reinforcement o f caregiver caregiving efforts, facilitation o f member interaction). The checklist was modeled on the recommendations o f Waltz, Addis, Koemer, and Jacobson (1993) who suggest that an adherence checklist contain facilitator behaviors that are unique to the treatment modality and essential to it; behaviors that are essential to the treatment modality but not unique to it; behaviors that are compatible with the specific treatment modality and therefore not prohibited but, are neither necessary nor unique; and behaviors that are proscribed. Content was informed by Burnside and Schmidt (1994), Posthuma (1996) and Toseland (1995). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 76 Two meetings o f each o f the Empathic Coping groups were rated. Selection of the meetings was based on the rater’s schedule. Due to practical problems, only four o f the six Information/Support groups had two meetings rated and, one set o f ratings was conducted by a different rater because part way through the study, the primary rater was no longer able to serve as a rater. By the time a new rater was found and trained by the primary rater, the remaining Information/Support groups could not be rated. The groups could not be rated because one group changed its format (but after all study participants had completed their assessment period) and the other group took a break for two months to accommodate summer schedules (but after all study participants had completed their assessment period). Intervention program for the Empathic Coping group Rationale for structure and format. A group approach was adopted for the Empathic Coping group. This approach was chosen for two reasons: (1) comparability with the Information/Support group and (2) potential advantages over individual treatment. A group approach has the advantage over individual treatment o f providing a sense o f universality and offering a source o f feedback from individuals with perceived credibility (other caregivers). In addition, caregivers may be more likely to try new strategies if they see other group members achieving success with these techniques. Finally, group format may facilitate reappraisal of care-recipient behaviors, appropriate expectations, and acceptance (Barnes et al., 1981). The structure o f the Empathic-Coping group was one-half hour o f sharing and discussion o f caregivers’ current caregiving situations and then one hour o f structured Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 77 didactics and practice exercises. This combined format was chosen based on the assumption that caregivers who are distressed and feeling that their own needs are insufficiently satisfied will be preoccupied by their own distress and have difficulty learning how to be empathic towards the care-recipient. Therefore, the sharing and discussion portion o f the group allowed caregivers to share and get support for their current problems, thereby reducing their immediate level of distress. Every attempt was made to frame issues in terms o f the reciprocal influence o f the caregiver and care-recipient so to encourage caregivers to view satisfaction of their needs as not entirely separate from the care-recipient. However, the content o f the material covered during this portion of the group was likely similar to that covered in general information/support groups. During the didactic portion o f the group, the facilitator presented information and elicited caregivers’ reactions and reflection. Handouts were distributed during the didactics to guide discussion and within-session exercises were conducted when possible to apply the information being taught. Out-of-session practice exercises were assigned at the end of each session to give caregivers the opportunity to practice the skills that they had learned during the group; these exercises were reviewed at the next group. Description of content. A detailed outline o f the intervention, session handouts and practice exercises are included in Appendix B. Session O ne: O verview o f the G roup. The objectives o f the first session are to provide an overview of the group, to define empathic coping and to present a rationale for learning/developing the component skills. The primary rationale for teaching empathic coping is that it allows for improved interactions with the care-recipient, decreased Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 78 relationship strain, decreased distress in both the caregiver and the care-recipient and, increased caregiver competence. Session Two: U nderstanding the D isease a n d H ow You R ea ct to It. The goals of the second session are to increase caregiver understanding o f dementia, its impact on the care-recipient, the care-recipients’ efforts to cope with and adapt to dementia-related changes and caregivers’ reactions to these changes. Content was informed by Andresen (1995), Arendt and Jones (1992), Bahro, Silber, and Sunderland (192), Bell and Troxel (1997), Cohen and Eisdorfer (1987), Cohen, Kennedy, and Eisdorfer (1984), Kitwood (1991), LaBarge and Trtanj (1995), McGowan (1993), Miesen (1992), Rose (1996) and Synder, Quayhagen, Shepherd, and Bower (1995). This session defines dementia and describes the underlying neuroanatomical changes that characterize Alzheimer’s disease and Vascular dementia, two o f the most common conditions that cause dementia and, the ways in which symptoms map onto neuroanatomical changes. Behavioral manifestations o f specific impairments and patterns o f change/stages are discussed; also reviewed are the care-recipients’ remaining abilities. Collectively, this information is provided to help caregivers form an accurate understanding and realistic expectations o f the care-recipients’ behavior. Two main messages are underscored. One message is that the care-recipients’ “problem behavior” usually is not done to deliberately upset or aggravate the caregiver. Caregivers will feel hurt and angry if they view the care-recipients’ behavior as intentional when it is not. They also will miss the underlying cause o f the behavior. The second message is that care-recipients have a diminished capacity to reflect upon and take Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 79 responsibility for their behavior. Caregivers will feel frustrated and angry with care- recipients if they do not modify their expectations to reflect this fact. Caregivers then are provided with information about what it is like to experience dementia. Topics covered are reactions o f individuals with dementia to the disease, their coping efforts and, their needs at various phases in the disease process. This information is provided to build caregiver perspective-taking as well as accurate understanding. Finally, caregivers are asked to share their reactions to caring for an individual with dementia and the ways in which dementia has impacted their relationship with the care- recipients. Caregivers are assigned an out-of-session practice exercise at the end o f the session to observe their reactions to the care-recipient. Session Three: H ow to R espond to Your a n d Their E m otion: P art /. The goals o f the third session are to increase caregivers’ understanding o f their emotional reactions and control over their expression. Content was informed by Bullmer (197S), Egan (1986) and Ivey and Authier (1978). This session reviews the practice exercise assigned at the previous session, focusing on the caregivers’ behavioral and emotional reactions as well as the corresponding response in the care-recipients. This exercise is used to lay the groundwork for the connection between experiences (something that happens to the caregiver), behaviors (something that the caregiver does or fails to do) and feelings. This connection is emphasized so that caregivers learn that part o f identifying emotions is understanding the behaviors and situations with which emotions are associated. Caregivers then are given a rationale for learning to identify their own emotions. This rationale is two-pronged: (1) learning to identify their emotions will make it easier to Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 80 identify and respond to the emotions in the care-recipients which is important for increasing understanding of, and appropriate responding to, the care-recipients and, (2) learning to identify their emotions will increase their sense o f control over their emotional reactions to the care-recipients and allow them to react differently. Caregivers are provided with information about physiological and expressive components o f emotion, the latter of which includes verbal messages, facial expressions, body language and paralanguage. Caregivers are assigned an out-of-session practice exercise to describe what they feel when they experience different types of emotions and how they express these emotions. Session Four: How to R espond to Your a n d Their Em otion: P art II. The goals of session four are to increase caregivers’ understanding of the care-recipients’ non-verbal and verbal behavior and to identify barriers to accurate understanding. Content was informed by Egan (198S, 1986) and Hoffman and Pratt (1991). The session reviews the practice exercise and objectives o f the previous session. Then caregivers are provided with a rationale for increasing their skills at identifying the care-recipients’ non-verbal and verbal behavior: that these skills will enable them to respond more effectively to the care- recipients which in turn will improve their interactions with the care-recipients. An emphasis is placed on the care-recipients’ increasing reliance on non-verbal behavior to express their feelings and needs. The same components of emotion that were discussed at the previous session are reviewed but this time with respect to the care-recipients’ behavior. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 81 Information then is provided about factors that impinge on the caregivers’ ability to identify, accurately, the feelings and needs of the care-recipients and respond appropriately to them. Barriers to accurate perception o f the care-recipients are the caregivers’ evaluations, judgments and beliefs about the care-recipients. Consequences on the relationship o f holding these beliefs are identified: misunderstanding, inaccurate responding, negative emotions and relationship strain. Caregivers are assigned out-of session practice exercises in which they are given vignettes and asked to identify how the person in the vignette feels and the basis for their response (using non-verbal and verbal cues). Session F ive: P erspective-Taking. The objective o f this session is to increase caregivers’ understanding o f the situational determinants o f the care-recipients’ feelings and corresponding behavioral reactions (with attention to negative feelings and so called “problem behaviors”). Content was informed by Bell and Troxel (1997), Bullmer (1975), Gwyther (1997) and Hoffinan and Pratt (1991). Practice exercises are reviewed and the main objectives o f the previous four sessions are summarized. Then, caregivers are given the following rationale for improving their understanding o f the situational determinants of the care-recipients’ behavior: this understanding will allow them to circumvent or defuse negative reactions and interactions with the care-recipients. By knowing what situations trigger negative reactions in the care-recipients and why, caregivers can avoid the situations or minimize the situations’ impact. Common situations in which the care-recipients find themselves that can engender distress and elicit “problem behaviors” (defined as manifestations o f distress and/or Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 82 attempts to cope with the situation) are grouped into four main categories: (1) social situations, (2) situations in which there is too much going on so as to create sensory overload, (3) new situations and (4) situations involving complicated demands or activities. These categories are rough groupings and are not necessarily mutually exclusive. Caregivers are asked to imagine what it must be like for a person with dementia to be in these situations and then to describe what they, the caregivers, would feel or need in these situations and, how someone could be helpful to them. This exercise is conducted to promote perspective-taking. Caregivers are asked to repeat this exercise on their own as out-of-session practice. Two additional assignments are given to enhance perspective-taking. One assignment is to read a three page narrative describing feelings common in dementia and their situational determinants. The discussion o f each feeling begins with a perspective-building statement in which caregivers are asked to draw on their own experiences that have elicited the respective feelings. The second assignment asks caregivers to think o f a personal example o f when they felt disoriented, their reactions to feeling this way and then, to use their experience to understand disorientation in the care-recipients. They are asked to apply this same exercise to another situation. Session Six: P ulling it Together: P reparing to C om m unicate y o u r New U nderstanding. The goal o f this session is to increase caregivers’ accurate/effective responding to the care-recipients’ “problem behaviors”. Content was informed by Cairl (1995), Danish, D’Augelli and Hauer (1980), Eagan (1985, 1986) and Gwyther (1997). Practice exercises are discussed and the goals of the previous two sessions are reviewed, in combination with the rationale for the current session: that learning to be a more Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 83 effective responder leads to improved caregiver-care-recipient interactions and lessens distress in both caregivers and care-recipients. Caregivers are told that the skills for effective responding build on the skills that they have been developing during the previous sessions: (1) identifying the situational determinants o f the care-recipients’ behavior, underlying feelings or needs and (2) monitoring their own reactions and beliefs about the care-recipients, with the recognition that these reactions can be both barriers to accurate perception and contributors to the care-recipients’ distress. Then, effective responses to specific care-recipient behaviors are discussed and caregivers are encouraged to practice these responses. The behaviors examined are repetitive behaviors and questions; confabulation; aggressive and agitated behaviors; inappropriate social behavior; suspiciousness, paranoia and delusions; problems with recognition and misidentification; clinging and shadowing; hiding things, searching and rummaging; bathing difficulties and dressing difficulties. Caregivers then are assigned out-of-session practice exercises in which they are given vignettes and asked to identify how the person in the vignette feels and the relevant experiences/situations and behaviors that contribute to the feeling(s). Session Seven: C om m unicating Your New U nderstanding. The goals o f this session are to enhance caregivers’ attending and listening skills (with respect to the care- recipients). Content was informed by Danish, D’Augelli and Hauer (1980), Eagan (1985, 1986, 1998), Gwyther (1997) and Rau (1993). Practice exercises are discussed and the points covered in the previous session are reviewed. Then, the rationale for enhancing attending and listening is presented: that these skills will assist caregivers in increasing their understanding o f the care-recipients and in communicating this understanding which, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 84 in turn, helps create more positive interactions with the care-recipients. Positive interactions reduce strain and distress. Attending behavior is defined and specific attending behaviors are reviewed. These behaviors are eye contact, body posture, head and facial movements and speech. In discussing the specific behaviors, effective and ineffective behavior are modeled and the messages that the respective behaviors communicate are explored. Components o f effective listening then are reviewed; for the most part, these components entail skills learned in previous sessions: listening to the care-recipients’ verbal messages, observing and reading the care-recipients’ non-verbal behavior and using the situation or context in which the care-recipients find themselves to interpret their verbal messages and non-verbal behavior. Barriers to effective listening are identified and grouped into three types: behaviors that distract caregivers thereby leading to inadequate listening, behaviors that judge what caregivers hear, leading to evaluative listening, and behaviors that filter what caregivers hear, leading to filtered listening. Finally, caregivers are provided with suggestions for how to pull together attending and listening skills to create the optimal context for communicating with the care-recipients. Caregivers are assigned out-of-session practice exercises in which they are asked to observe their attending and listening skills when interacting with others and then to reflect on what they observed. They are asked to repeat the exercise observing their interactions with the care- recipients. Session E ight: C om m unication Strategies, W rap-up a n d R eview . The goals of this session are to increase caregivers’ understanding of the care-recipients’ communication Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 85 impairments and remaining abilities, to improve caregivers’ communication skills with the care-recipients and to consolidate caregivers’ learning over the past seven sessions. Content was informed by Butin (1991), CarkhufF (1969a, 1969b), Ivey and Authier (1978), Goldsmith (1996), Rau (1993) and Richter, Bottenberg and Roberto (1993). The practice exercise is reviewed and a rationale is provided for increasing caregivers’ understanding o f the care-recipients’ communication abilities as well as the caregivers’ ability to communicate effectively with the care-recipient. The rationale is that by trying to understand and support the care-recipients’ attempts to express themselves, caregivers will better understand the care-recipients’ needs. This understanding can facilitate care- recipient coping and adaptation to dementia, lessening distress and behavioral manifestations o f distress. In turn, interactions with the caregiver will be less negative. In addition, supporting care-recipients’ communication attempts allows them to stay emotionally connected and involved, another important factor in coping and adaptation. Information is provided about specific communication impairments. This information is provided as a means to promote realistic expectations regarding care-recipients’ communicative abilities. Specific strategies for communicating are examined and then a summary o f all the sessions is provided. Measures A summary table describing the measures is provided in Table S. The actual measures are provided in Appendix C. A schematic representation o f the interrelationship amongst the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table S MEASURES MEASURE SOURCE DOM AIN ASSESSED TYPE of VARIABLE TIME Demographics Sociodem ographic characteristics D escriptives Pre-test Blessed Dementia Scale B lessed, Tomlinson & Roth (1968) Level of care-recipient impairment Descriptives Pre-test Revised M emoiy and Behavior Problem Checklist Depression subscale: 9-item s Disruption subscale: 8-item s Memory-Related Problems subscale: 7-item s Teri, Traux, Logsdon, U om oto, Zarit & Vitaliano (1992) Stressors Com petence with caregiving Dependent variable Pre-test; Post-test Coping strategies questionnaire Acceptance: 4-item s; Range = 4.0-20.0 Wishfulness: 3-item s; Range = 3.0-15.0 Intrapsychic: 4-item s; Range = 4.0-20.0 Instrumental: 5-item s; Range = 5.0-25.0 Pruchno & Resch (1989); W illiam son & Schulz (1993) for use of scale w ith specific stressors Em otion-focused coping, problem - focused coping with 3 stressors: (1) caregiver relationship with im paired fam ily m em ber, (2) caregiver management of household responsibilities (3) amount of caregiver participation in social activities Dependent variable Pre-test; Post-test Empathic Responding Scale 10-item s; Range 10.0-50.0 O’Brien & D eLongis (1996) Empathic Coping Dependent variable; Criterion variable Pre-test; Post-test Interpersonal Reactivity Index Perspective Taking: 7-item s; Range 0.0-28.0 Empathic Concern: 7-item s; Range 0.0-28.0 Persona! Distress: 7-item s); Range 0.0-28.0 Davis (1980; 1983) D ispositional Em pathy Dependent variables; Predictor variables Pre-test; Post-test Dyadic Relationship Strain scale 9-item s; Range: 0.0-27.0 Poulshock & Deim ling (1984); Deimling & . Bass (1986) Strain in caregiver-care-recipient relationship due to caregiving D ependent variable Pre-test; Post-test 8 Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 5 (cont.) Family Relationship Strain scale 5-item s; Range: 0.0-15.0 Poulshock A Deimling (1984); Deimling & Bass (1986) Strain in caregiver relationship with other fam ily m em bers due to caregiving Dependent variable Pre-test; Post-test Social Activity Restrictions scale 5-item s; R ange: 0.0-10.0 Poulshock A Deimling (1984); Deimling & Bass (1986) Change in caregiver participation in activities due to caregiving Dependent variable Pre-test; Post-test Caregiving Satisfaction 5-item s; R ange: 4.0-20.0 Law ton, Kleban, M oss, Rovine & Glicksman (1989) Satisfaction with caregiving Dependent variable Pre-test; Post-test Caregiving Com petence Scale 4-item s; Range: 4.0-16.0 Pearlin, M ullan, Sem ple A Skaff(1990) Com petence with caregiving Dependent variable Pre-test; Post-test Brief Sym ptom Inventory 53-item s; Range: 0.0-212.0 Derogatis A Spencer (1985) General psychological distress Dependent variable Pre-test; Post-test Bradbum A ffect Balance Scale Positive affect', 5-item s; Range: 0.0-5.0 Negative affect: 5-item s; Range: 0.0-5.0 Bradbum (1969) General psychological well-being D ependent variable Pre-test; Post-test Communal Orientation Scale Clark, Ouellette, Pow ell A Communal orientation towards Predictor Pre-test 14-item s: Range: 14.0-70.0 M ilberg (1987) relationships variable Exchange Orientation Scale-Revised 16-item s; Range: 15.0-75.0 M urstein, W adlin A Bond (1987) Exchange orientation towards relationships Predictor variable Pre-test Social Interaction Scale 6-items; Range: 0.0-12.0 Gilleard, Belford, G illeard, W hittick A Gledhill (1984) Quality of premorbid past relationship between caregiver and care-recipient Predictor variable Pre-test Relational Deprivation Scale Deprivation of Intimate Exchange 3-item s; Range: 3.0-12.0 Deprivation of Goals and Activities 3-item s; R ange: 3.0-12.0 Pearlin, M ullan, Sem ple A Skaff(1990) Nature of relationship changes betw een caregiver and care-recipient as a result of dementia D escriptives Pre-test o e 88 variables is provided in Figure 1. The following measures were administered at both pre test and post-test except when specified. Demographics The Caregiver Intake Form was used at pre-test to gather information on the caregiver’s age, sex, ethnicity, marital status, employment status, educational attainment, household annual income, household members, relationship to the care-recipient, length o f time as primary caregiver, receipt o f assistance with caregiving, prior support group experience and past or current psychotherapy and reasons for caregiving. For this last item, caregivers were asked to rank order each o f five reasons for caregiving, with 1 indicating the most important reason and 5 indicating the least important reason. These reasons were gratitude, obligation or duty, feelings o f attachment, usefulness and personal satisfaction, and financial considerations (Circirelli, 1995). Data collected on reasons for caregiving was not used for analyses reported in this paper. Information also was gathered on the care-recipient’s age, sex, ethnicity, marital status, residence, diagnosis, date of diagnosis and duration of symptoms. Care-recipient Level o f Impairment The level o f the care-recipient’s impairment was assessed at pre-test using the 11- item Blessed Dementia Scale (Informant version: Blessed, Tomlinson & Roth, 1968). For the first eight items, caregivers are asked to indicate their estimate of the care-recipients’ current ability to perform a variety o f tasks, such as, ability to understand situations or explanations, remember short lists o f things, or perform household tasks. Caregivers are asked to use the 3-item Likert scale o f U sually able (0), Som etim es able (0.5), or R arely Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Figure 1 Schematic Representation of Interrelationship amongst Variables Mental Health: Psychological distress Psychological well-being Moderators/Predictors: D ispositional em pathy Q uality of past relationship Relationship orientation Satisfaction with Caregiving Distress by care-recipient’s behaviors Strain: Relationship with care-recipient Relationship w ith other fam ily m embers Level of participation in activities Coping Response: Problem-focused Emotion-focused ( ^ J Empathic coping 2 Caregiving Efficacy: Confidence in ability to handle care-recipient’s behaviors Perceived com petence w ith caregiving Stressors:Caregiver Relationship w ith care- recipient Household responsibilities Participation social activity Frequency of care- recipient problem behaviors o e 90 able (I) to rate the first six items and the 3-item Likert scale o f A s -well a s before (0), Som e lo ss (0.5), or Severe loss (I) to rate items seven and eight. For the last three items, caregivers are asked to indicate their estimate o f the care-recipients’ ability to dress, eat and toilet using a 4-item Likert scale from 0 to 3, with the anchor points tailored to the individual tasks. However, the direction of the Likert scale was the same for all tasks, with “0” indicating no help required and “3” indicating inability to perform the task. Ratings were summed to compute a total score, with higher scores indicating greater impairment. (Item 3 was recoded before used in the total score because it was worded in the negative direction, with a higher score indicating lower impairment). Possible scores range from 0.0-17.0. In the present study coefficient alpha was .80. Stressors: (1) Frequency o f memory and behavioral disturbances in the care-recipient and the severity o f the corresponding caregiver reaction to these behaviors (e.g. the degree to which the behaviors “bother or upset” the caregiver) was assessed using the 24-item Revised Memory and Behavior Problem Checklist (Teri, Traux, Logsdon, Uomoto, Zarit, & Vitaliano, 1992). Caregivers are asked to indicate the frequency of the behavior on a rating scale o f N ever occurred (0) to O ccurs d a ily (4). They then are asked to indicate how much the problem bothered or upset them using a rating scale ranging from N o t a t a ll (0) to E xtrem ely (4) . Unfortunately, data from this measure could not be used because o f too much missing information. (2) Caregivers are asked to rank order three types o f stressors based on the degree o f stressfulncss that they create for the caregiver. The three stresssors were: (1) caregiver Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 91 relationship with the impaired family member, (2) caregiver management o f household responsibilities and (3) amount o f caregiver participation in social activities. These stressors were used, in combination with the coping measure described in the following section, to examine the use o f different coping strategies with different types o f caregiving stressors. Data from the rankings was not used for analyses reported in this paper. Coping: (1) Emotion-focused and problem-focused coping was assessed by a 16-item coping scale by Pruchno and Resch (1989) (adapted from Kiyak, Montgomery, Borson & Ten, 1985). (The first 16 questions on the Coping Strategies Questionnaire in Appendix C). This scale was selected because o f its previous use with caregiver populations, derivation o f items that have been both theoretically described and empirically identified and, its brevity. The measure yields four subscales: three that are emotion focused (Acceptance, Wishfulness, Intrapsychic) and one that is problem-focused (Instrumental). Although Pruchno and Resch (1989) used this scale as a measure o f coping with the general “stresses o f caregiving”, in the present study the scale was used to measure coping with three specific caregiving stressors (the stressors that the caregivers rank ordered: relationship with the impaired family member, management o f household responsibilities and amount o f participation in social activity). Caregivers are asked to complete the scale for each o f the stressors. This approach was adopted from Williamson and Schulz (1993) and is considered most appropriate when exploring the relative effectiveness o f different coping strategies for different types o f stressors. Caregivers are given a series o f statements, each representing a specific coping response. They are asked Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 92 to think about each statement in reference to the respective stressor and to indicate how often during the past month they used each coping strategy in dealing with the respective stress using a 5-point Likert scale ranging from N ever (I) to M ost o f the tim e (5). Ratings are summed across the subscales, with higher values associated with more frequent use o f the coping strategy. The 4-item Acceptance subscale includes items such as “Accepted the situation” or “Made the best of it”; possible scores range from 4.0-20.0. The 3-item Wishfulness subscale includes items such as “Wished you were a stronger person to deal with it better” or “ Wished you could change the way you felt”; possible scores on this scale range from 3.0-15.0. The 4-item Intrapsychic subscale includes items such as “Had fantasies about how things might turn out” or “Hoped a miracle would happen”; possible scores range from 4.0-20.0. The 5-item Instrumental subscale contains items such as “Made a plan o f action and followed it” or “Changed something about yourself so you could deal with the situation better”; possible scores range from 5.0 to 25.0. Average scores also can be calculated by dividing the subscale total by the total number o f items comprising the respective scale. Average subscale scores should be used if direct comparisons are made across the subscales to account for the different numbers of items per subscale. However, in this study direct comparisons were not made so summed scores were used. The scale has adequate internal consistency in caregiving samples (Pruchno & Kleban, 1993; Rose et al., 1997). In the present study, coefficient alphas (Cronbach, 1951) for Wishfulness, Acceptance, Intrapsychic and Instrumental coping were, respectively, .76, .73, .60 and .70 for stress due to the relationship with the care-recipient; Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 93 .77, .82, .64 and .79 for stress due to management of household responsibilities, and .85, .81, .75 and .85 for stress due to amount o f participation in social activities. In the present study there were moderately high correlations across the three stressor domains for the respective subscales (e.g. acceptance coping with relationship with care-recipient, acceptance coping with amount o f participation in social activities and acceptance coping with management o f household responsibilities). Nonetheless, domain specific subscales were retained, as domains were correlated differently with outcome measures and domain specificity in coping is central to the study hypotheses. (2) Empathic Coping was assessed by a modified version o f the 10-item Empathic Responding scale (O’Brien & DeLongis, 1996). (Questions 17-26 on the Coping Strategies Questionnaire—relationship with care-recipient section in Appendix C). This scale measures two aspects o f empathic responding: cognitive/affective strategies (perspective taking and vicarious experiencing o f another’s concerns and feelings) and behavioral strategies (listening, providing comfort or support). In the present study, the response category o f the scale was modified from a 3-point Likert scale to the same 5- point Likert scale used on the Coping Strategies Questionnaire. In addition, the wording o f the statements was changed from “the other person(s)” to “your impaired relative”. The effect o f the modification did not affect internal consistency in that coefficient alpha (Cronbach, 1951) in the present study was .86. Caregivers are given a series o f statements, each representing an empathic coping response. Caregivers then are asked to rate how often in the past month they used the strategies in dealing with their relationship with the care-recipient, using the 5-point Likert scale ranging from N ever (1) to M ost o f Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 94 the tim e (5). Ratings are summed and a total score is computed, with higher values indicating more frequent use o f empathic coping. Possible scores range from 10.0-50.0. Items include “Tried to understand your impaired relative’s concerns”, “Imagined yourself in your impaired relative’s shoes”, or “Tried to help your impaired relative by listening to him/her”. This measure has demonstrated internal consistency in non-caregiving samples (O’Brien & DeLongis, 1996). Empathy (1) Dispositional empathy was assessed by a 21-item modified version of the 28- item Interpersonal Reactivity Index (Davis, 1980). This scale consists o f four independent, 7-item subscales, each measuring a different aspect of empathy: Fantasy, Perspective Taking, Empathic Concern and Personal Distress. The Fantasy subscale measures the tendency to transform oneself imaginatively into the feelings and actions of fictitious characters in books, movies and plays. Data from this subscale were not collected because it was considered only peripherally related to the study research questions. The Perspective Taking subscale measures the tendency to adopt the psychological point o f view o f other people in everyday life. Items include “Before criticizing someone, I try to imagine how I would feel if I were in their place”, “I sometimes find it difficult to see things from the ‘other guy’s’ point of view” or “I try to look at everybody’s side o f a disagreement before I make a decision”. The Empathic Concern subscale measures the tendency to experience feelings o f warmth, compassion and concern for other people. Items include “I often am quite touched by things that I see happen”, “Other people’s misfortunes do not usually disturb me a great deal”, or “I often Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 95 have tender, concerned feeling for people less fortunate than me”. The Personal Distress subscale measures feelings o f personal unease and discomfort in reaction to the emotions o f others. Items include “I feel helpless when I am in the middle of a very emotional situation”, “When I see someone who badly needs help in emergency situations, I go to pieces”, or “When I see someone get hurt, I tend to remain calm.” Caregivers are asked to indicate the extent to which each item describes themselves, using a five-point Likert scale ranging from Strongly agree (0) to Strongly disagree (4). Items were recoded so that higher scores indicated greater levels of empathic concern, perspective taking and personal distress. Ratings for each subscale are summed to compute a total subscale score. Possible scores for each subscale range from 0.0-28.0. The subscales have demonstrated internal consistency in non-caregiving samples (Davis, 1980; 1983). In this sample, coefficient alpha for Perspective Taking, Empathic Concern and Personal Distress were, respectively, .65, .64 and .76. Perspective Taking was moderately positively correlated with Empathic Concern (r = .41) and weakly negatively correlated with Personal Distress (r = -.26). Empathic Concern was not correlated with Personal Distress (r = -. 13). Strain: (1) Strain was measured by three factor-derived scales assessing the effects of caregiving on interpersonal and social functioning (Poulshock & Deimling, 1984; Deimling & Bass, 1986): a 9-item Dyadic Relationship Strain scale, a 5-item Family Relationship Strain scale and a 5-item Social Activity Restrictions scale. The 9-item Dyadic Relationship Strain scale measures changes in the caregiver-care-recipient relationship, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 96 such as feeling angry and resentful towards the care-recipient, manipulated by the care- recipient, or enjoying being with the care-recipient. The 5-item Family Relationship Strain scale measures changes in the caregiver-other family member relationships, such as feeling pressured about balancing caregiving with other family responsibilities or relying on other family members for support and help. Caregivers are asked to indicate the extend to which they agree with a series o f statements about their respective relationships, using a 4- point Likert scale from S trongly agree (3) to Strongly disagree (0). Positive items were reverse scored so that higher scores indicate greater strain; then ratings were summed for each subscale to compute a total subscale score. Possible scores range from 0.0-27.0 on the Dyadic Relationship Strain scale and from 0.0-15.0 on the Family Relationship Strain Scale. The 5-item Social Activity Restrictions Scale measures changes in caregivers’ activities resulting from caregiving such as visiting less often with family or friends or taking part in fewer social and recreational activities. For this scale, caregivers are asked to indicate how their current participation in social activities is affected by caregiving by indicating whether they participated M ore often (0), The sam e (1) or L ess often (2) in activities because of caregiving. Ratings were summed to compute a total subscale score, with higher scores indicating greater restriction or reduction in social or recreational activities. Possible scores range from 0.0-10.0. Internal consistency is high for other caregiving samples (Bass et al., 1988; Stephens et al., 1991). Coefficient alpha in this sample for the Dyadic Relationship Strain Scale was .89, .45 for the Family Relationship Strain Scale and, .81 for the Social Activity Restrictions Scale. In the total sample, Dyadic Relationship Strain was not associated Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 9 7 with Family Relationship Strain (r =.18) nor with Social Activity Restrictions (r = .02). Family Relationship Strain and Social Activity Strain showed a mild positive association (r = .33). Caregiving Satisfaction: (1) Satisfaction with caregiving was assessed using the factor confirmed Caregiving Satisfaction Scale (Lawton, Kleban, Moss, Rovine, & Glicksman, 1989), with a modified response format. Caregivers are asked to rate the extent to which they agree with four statements, using a 5-point rating scale with anchor points o f Strongly agree (I) to Strongly disagree (5). Items included “You really enjoy being with your impaired family member” or “Your impaired family member’s pleasure over some little things gives you pleasure”. Items were reverse scored so that higher scores indicated greater satisfaction. Ratings were summed to yield a total scale score, with possible scores ranging from 4.0-20.0. This scale has demonstrated internal consistency and concurrent validity with caregivers (Lawton et al., 1989). Coefficient alpha for this sample was .76. Caregiving Competence: (1) Perceived competence with caregiving was assessed using the 4-item Caregiving Competence Scale (Pearlin et al., 1990). The scale is composed o f two parts. In the first part, caregivers are asked to think about how much two statements describe their thoughts about caregiving using a 4-point Likert type scale from Very m uch (4) to N ot a t a ll (1). The statements are “Believe that you’ve learned how to deal with a very difficult situation” and “Feel that all in all, you’re a good caregiver” . In the second part, caregivers are asked to think about all the things that they face as a caregiver (daily ups Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 98 and downs, the job that they are doing and the ways they deal with the difficulties). Then they are asked to think about all these things as a whole and rate how competent and self- confident they feel with respect to them, using a 4-point Likert scale o f Very (4) to N ot a t a ll (1). Ratings for all four items are summed to yield a total score, with higher scores indicating greater perceived competence. Possible scores range from 4.0-16.0. This scale has demonstrated internal consistency with caregivers (Pearlin et al., 1990). Coefficient alpha for this sample was .83. (2) Perceived competence with caregiving also was assessed using ratings from the Revised Memory and Behavior Problem Checklist (Ten et al., 1992). In addition to the standard administration, caregivers are asked to indicate their confidence in their ability to handle each o f the problems, as reported in Talkingon-Boyer and Snyder (1994) and similar to approaches used in Poulshock and Deimling (1984) and Haley et al., (1987). Perceived confidence was used as an indicator o f caregiving competence or efficacy. As indicated earlier, the data from this measure could not be used due to too much missing data. Mental Health (1) General psychological distress and specific psychiatric symptomology was measured by the 53-item Brief Symptom Inventory (BSI: Derogatis & Spencer, 1985). Caregivers are given a list of symptoms and are asked to indicate how distressed they were by the respective complaint during the past week using a 5-point Likert scale, ranging from N ot a t a ll (0) to E xtrem ely (4). The BSI yields nine clinical subscales and one global score which is an indicator o f general distress. Only the global score was used in the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 99 analyses. The global score is computed by summing all ratings. Scores range from 0.0- 212.0, with higher scores indicating greater psychological distress. The BSI has demonstrated reliability and validity among caregivers (Anthony- Bergstone, Zarit & Gatz, 1988; Knight, 1991). In this sample, the coefficient alpha for the global score was .94. (2) Psychological well-being was measured by the 10-item Bradbum Affect Balance Scale (Bradbum, 1969), which consists of five items that assess positive affect and five items that assess negative affect. Caregivers are provided with the ten affect statements and are asked to respond Y e s or N o as to whether or not they have felt that way in the past week. Examples of positive affect items include “pleased about having accomplished something” or “particularly excited or interested in something”. Examples o f negative affect items include “depressed or very unhappy” or “very lonely and remote from other people”. The yes responses are summed separately for the positive and negative affect items to yield Positive Affect scores and Negative Affect scores. Possible scores range from O.O-S.O for both scales. Higher scores indicate greater positive affect and greater negative affect. A third, Affect Balance score, is calculated by taking the difference between the positive and negative affect scores and adding a constant of 20 to eliminate negative values. The Affect Balance Scale has demonstrated reliability and validity among caregivers (Pruchno & Resch, 1989). Coefficient alpha for this sample was .68 for positive affect and .70 for negative affect. Positive and negative affect were mildly negatively correlated (r = -.33). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 100 The following measures were administered at pre-test only (with the exception o f nature of relationship changes). Relationship Orientation: (1) The degree to which the caregiver exhibits a communal orientation towards relationships was assessed by the 14-item Communal Orientation Scale (Clark et al., 1987). Items include “I often go out o f my way to help another person”, “I’m not the sort o f person who comes to the aid o f others”, or “When I have a need that others ignore, I’m hurt”. Caregivers are asked to rate each item on how characteristic the item is o f them, using a 5-point Likert scale ranging from E xtrem ely uncharacteristic o f them (1) to E xtrem ely characteristic o f them (5). Items were recoded so that a higher score indicates a higher communal orientation. Ratings were summed to calculate a total score, yielding a possible scores from 14.0-70.0. The scale has demonstrated internal consistency in caregiving samples (Wiliamson & Schulz, 1990). In this sample, Coefficient alpha was .76 (2) The degree to which the caregiver exhibits an exchange orientation towards relationships was assessed with a 15-item modified version o f the 16-item Exchange- Orientation Scale-Revised (Murstein, Wadlin, & Bond, 1987). One item was dropped because it referred to “my spouse” and all o f the caregivers were not married. Items include “I usually do not forget if I owe someone a favor or if someone owes me a favor,” “If I take a friend out to dinner, I expect him or her to do the same for me sometime,” or “When buying a present for someone, I try to remember the value o f what they have given me in the past.” Caregivers are asked to rate each item on how characteristic the item is Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 101 o f them, using a 5-point Likert scale ranging from Strongly agree (I) to Strongly disagree (5). A total score is calculated by summing all o f the items, yielding a possible score from 15.0-75.0. Items were recoded so that a higher score indicates a higher exchange orientation. In this sample, coefficient alpha was .86. Quality o f Premorbid Relationship with Care-recipient Quality o f the premorbid past relationship between the caregiver and care-recipient was measured by the 6-item Social Interaction Scale (Gilleard, Belford, Gilleard, Whittick & Gledhill, 1984). Caregivers are asked to rate items according to before the onset o f the illness, using a 3-point Likert scale from N ever (0) to M uch o f the tim e (2). Items include “feel cross or angry with him/her” or “feel any tension or strain in the relationship”. Items were recoded so that higher scores indicated a better premorbid relationship. Ratings were summed to create a total score. Possible scores range from 0.0-12.0. Coefficient alpha for this sample was .83. Nature o f Relationship Change since Illness Onset The nature o f relationship changes between the caregiver and care-recipient was measured by the 6-item Relational Deprivation scale (Pearlin et al., 1990). This measure is divided into two, 3-item subscales: Deprivation o f Intimate Exchange, which involves the loss o f exchange o f intimacy, and Deprivation o f Goals and Activities, which pertains to goals and social activities that were once shared with the care-recipient but that are no longer attainable. Caregivers are asked to indicate the extent to which they feel that they have personally lost the respective items, using a 4-point Likert scale ranging from N o t a t a ll (I) to C om pletely (4). Subscale scores are calculated by summing the ratings on the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 102 respective items. Possible scores range from 3.0-12.0, with higher scores indicating greater loss o f intimacy and greater loss of shared goals and activities. Although a total loss score can be calculated by summing all o f the items (possible range from 6.0-24.0), a total score was not used in the analyses because it was conceptually more interesting to keep, distinct, loss of intimacy and loss o f shared goals and activities. This scale has demonstrated internal consistency with caregivers (Pearlin et al., 1990). In this sample, coefficient alpha was .81 for Deprivation o f Intimate Exchange and .74 for Deprivation o f Goals and Activities. The two subscales were moderately positively correlated (r = .58). Analysis Strategy The following analyses were performed. Descriptive analyses were conducted to evaluate the effects o f attrition and non-randomization on the comparability o f the Empathic Coping and Information/Support groups at baseline. Categorical variables were analyzed with Chi-square or Fisher’s Exact test. Continuous variables were analyzed using independent-samples t tests. Independent-samples t tests were chosen over one-way ANOVAs because tests for the equality o f variances of the two samples being compared (Cochran-Cox and Welch-Satterthwaite) can be performed. Because groups differed in distribution o f kin relationship (adult child and spouse caregiver), group differences at baseline were explored with one-way analyses o f covariance (ANCOVA), with group as a between groups factor and kin relationship as the covariate. The three caregivers who were neither adult children nor spouses were not Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 103 included in these analyses. Independent-samples t tests were performed to evaluate comparability amongst the two types o f caregivers across groups. Pearson product moment correlations and point-biserial correlations were calculated to assess the bivariate relationships among the outcome variables and among the outcome variables and key demographic variables. A series o f analyses were performed to address the first research question (Hypotheses la-3) of whether or not there are differential benefits between the Empathic Coping and Information/Support groups. Repeated measures multivariate analysis o f variance (MANOVA), with group and kin relationship as independent factors, were performed. Multivariate analyses of variance were performed because the outcome variables were correlated. Dependent variables were clustered into five groups based on the primary (Hypotheses la, 2a, 3) and exploratory hypotheses (Hypotheses lb, 2b). The first group o f dependent variables (Hypothesis la) included caregiver empathic coping (Empathic Responding Scale); empathic concern, perspective-taking, personal distress (Interpersonal Reactivity Index); acceptance coping with stress in the caregiver relationship with the impaired care-recipient (Coping strategies Questionnaire); strain in the relationship with the care-recipient (Dyadic Relationship Strain Scale); satisfaction with caregiving (Caregiving Satisfaction Scale) and caregiving competence (Caregiving Competence Scale). The second group of dependent variables (Hypothesis lb) included instrumental, intrapsychic and wishfulness coping with stress in caregiver relationship with the impaired care-recipient (Coping strategies Questionnaire). The third group o f dependent variables (Hypothesis 2a) included instrumental coping with caregiver participation with social activities and caregiver Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 104 management o f household responsibilities (Coping Strategies Questionnaire), caregiver strain in relationships with other family members (Family Relationship Strain) and strain from changes in caregiver social activities (Social Activity Restrictions Scale). The fourth group o f dependent variables (Hypothesis 2b) included acceptance, intrapsychic and wishfiilness coping with caregiver participation with social activities and caregiver management o f household responsibilities (Coping Strategies Questionnaire). The fifth group of dependent variables included general psychological distress and psychological well-being (negative affect and positive affect). MANOVAs were followed by mixed-design repeated measures analyses o f variance (ANOVAs) with group as the independent variable and pre-test-post-test scores as the repeated measures factor, stratified by kin relationship. Repeated measures ANOVAs were performed to evaluate whether the magnitude o f the average change was different depending on whether the caregiver was a spouse or an adult children. Because of baseline differences between the groups, change within the Empathic Coping and Information/Support groups was examined next, using paired-samples t tests, stratified by Idn relationship. The equivalent non-parametric statistics also were performed given the small sample size and the corresponding increased likelihood of violations in assumptions underlying the inferential statistics. Ordinary least squares regression was performed to evaluate the second research question (and test Hypothesis 4) o f whether certain characteristics o f caregivers predict empathic coping at baseline. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 105 RESULTS The presentation o f results is organized in the following manner. First attrition and the comparability of the Empathic Coping (EC) and Information/Support (IS) groups at baseline are examined, in light of non-randomization. Next, intercorrelations among measures at baseline are examined in preparation for multivariate tests o f the hypotheses o f the study. Then, results from analyses conducted to evaluate the specific research questions are reported, addressing change over time in both groups and the empathic coping construct. Finally, adherence and qualitative observations are considered. Effects o f Attrition Selection bias. In order to evaluate the possible effects o f selective attrition, independent-samples t tests were performed on pre-test scores for caregivers who completed the study and for those caregivers who dropped out (non-completers). This analysis was performed collapsed across groups and within each group. T tests tested the null hypothesis that there is no difference between caregivers who completed the study and caregivers who dropped out with respect to mean levels on pre-test measures. As indicated in the for right column in Table 6, results from the independent- samples t test analysis revealed that, when collapsed across groups, non-completers were comparable to completers on all pre-test measures at baseline except on psychological well-being [positive affect: t (61) = 2.83, p = .006]. Caregivers who dropped out showed significantly lower well-being (positive affect) than caregivers who completed the study. Within group comparisons showed similar results. As shown in the first column in Table 6, within the Empathic Coping group, non-completers were comparable to completers on Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. T M t i MEANS AND STANDARD DEVIATIONS FOR PRE-TEST MEASURES: ENTIRE SAMPLE BY GROUP ASSIGNMENT EMPATHIC COPING INFORMATION/SUPPORT TOTAL SAMPLE Compietets Non-Cotnpletefi Compietets Non-Completen Compietets Non-Completen (n=26) (n=5) <n=l9) (n -ll) (n=45) (n=!6) VARIABLE a ltd ■ std t a aid • aid t a ltd a aid 1 Quality of P ut Relationship 1.21 2.42 9.00 2.55 -0.60 7.26 3.43 7.10 2.51 0.14 7.14 2.92 7,69 2.60 0.19 Deprivation of Intimate Exchange 7.41 2.13 7.60 3.36 •0.10 1.79 1.54 1.10 2.62 -0.01 1.03 2.00 1.40 2.12 •0.55 Deprivation Goals + Activities 7.SI 2.44 1.00 2.92 ■ 0.0 9 1.21 2.07 9.20 1.75 •1.29 1.02 2,27 1.10 2.11 -1.16 Communal Orientation 49.96 6.32 45.60 9.79 1.26 47.19 1.70 49.50 4.14 -0,67 49.09 7.49 41.20 6.41 0.41 Exclude Orientation 41.46 9.13 44.10 7.05 -0.77 39.97 11.45 39.21 1.11 0.17 40.13 10.01 41.12 1.45 •0.10 Perspective Taking 17,62 3.19 17.00 1.51 0.42 17.11 3.16 11.91 2.91 •0.12 17.70 3.45 11.31 2.61 -0.64 Empathic Concern 20.31 3.21 20.20 3.19 0.07 20.63 2.56 20.73 3.23 -0.09 20.44 2.97 20.56 3.12 -0.13 Penonal Distress 11.61 3.95 13.20 3.70 ■O.ll 10.65 4.70 9.45 3,72 0.72 11.23 4.26 10.63 4.01 0.49 Empathic Coping 37.12 5.19 40.20 4.60 -0.15 35.47 6.02 37.12 6.90 -0,97 36.13 5.99 31.56 6.23 •0.91 Acceptance: Relationship 13.63 2.97 16.10 2.21 -0.11 15.61 2.96 15.45 3.24 0.20 15.67 2.93 15.11 2.96 -0.24 Acceptance: Houae Taiki 16.27 2.12 16.00 2.00 0.20 15.79 3.39 15.9 1 3.42 -0.09 16.07 3.05 15.94 2.91 0.15 Acceptance: Social Activity 13.10 2.12 16.00 1.17 -0.16 15.26 3.17 15.10 3.61 •0.36 15.57 3.27 15.17 3.07 -0.31 Instnmental: Relationship 17.13 2.66 14.20 3.56 2.16* 14.63 3.06 14.12 2.99 •0.16 16.09 3.07 14.63 3,07 1.64 InatnmenUl: Houae Tasks 16.11 3.02 16.10 2.39 0.06 15.16 4.35 15.00 2.91 0.10 16.16 3.70 15.60 2.10 0.53 Inatnmental: Social Activity 16.46 3.41 15.10 4.21 0.31 13.79 4.01 15.10 3.60 -0.17 15.33 3.17 15.33 3.61 0.00 Withfitineai: Relationship 10.13 2.75 10.00 2.74 0.11 9.42 2 41 10.12 2.27 -1.55 9,14 2.64 10.56 2.37 -0.96 Wtshfidnen: Houae Tasks 9.13 2.77 11.00 2.53 -0.16 9.51 2.65 10.55 2.25 -1.01 9,73 2.69 10.69 2.27 •1.27 Wishfidncss: Social Activity 9.62 3.05 10.20 3.11 -0.39 9.26 3.12 10.20 1.32 •0.90 9,47 3.05 10.20 1.97 -0.17 Intrapsychk: Relationship 10.3 1 2.35 11.20 4.55 -0.43 10.14 3.35 10.64 3.41 0.16 10.53 2.79 10.11 3.66 -0.32 Intrapsychic: Houae Ttnka 10.30 3.02 11.10 4.44 -0.12 11.42 3.44 12.10 3.60 •0.50 10.19 3.20 12.00 3.74 -1.12 Intrapeychic: Social Activity 11.27 3.26 12.00 5.24 •0.42 10.63 4.11 12.40 3.11 •1.12 11.00 3.64 12.27 4.15 -1.13 Dyadic Relationship Strain 12.12 6.35 11.40 5.13 0.47 12.11 6.13 12.22 4.47 •0.05 12.52 6.19 11.96 4.52 0,33 Family Rctatiorahip Strain 6.73 2.33 7.60 1.67 -0.73 6.24 2.76 6.36 3.67 -0.11 6.52 2.62 6.75 3.17 •0.21 Social Activity Restrictions 7.04 2.52 9.00 1 .4 1 -1.67 7.75 2.29 6.9! 3.39 0.11 7.34 2.43 7,56 3.03 -0.30 Carcpvtng Satiifaction 13.92 3.61 13.40 2.97 0.30 13.14 3.56 12.12 3.34 0.71 13.19 3.59 13.00 3.14 0.11 Cavtgning Competence 12.19 2.32 13.00 2.24 -0.72 12.14 2.93 12.09 1.51 0.91 12.47 2.51 12.31 1.71 0.13 Brief Symptom Invetrtoty: Total 37.49 33.11 42.95 17.11 -0.36 24.16 11.60 29.15 23.59 -0.73 31.16 21.44 33.94 22.10 •0.27 Negative Affect 1.62 1.55 0.10 1.10 1.12 0.97 1.34 2.09 1.5! -2.06* 1.34 1.41 1.69 1.54 -0.79 Positive Affect 3.30 1.27 1.40 1.67 3.22** 2.93 1.50 2.45 1.13 0.92 3.26 1.39 2.13 1.36 2.13** •p < .05, **p < .0 1 107 all pre-test measures except instrumental coping with the relationship with the care- recipient [t (31) = 2.16, p = .04] and psychological well-being [positive affect: t (11) = 3.22, p = .003]. Caregivers who dropped out o f the Empathic Coping group showed significantly lower well-being Gower positive affect) and less frequent use of instrumental coping with their relationship with the care-recipient than caregivers who completed the study. As shown in the second column o f Table 6, within the Information/Support group, non-completers were comparable to completers on all pre-test measures except negative affect [ t (30) = -2.06, p = .048]. Caregivers who dropped out o f the Information/Support group showed significantly lower well-being (higher negative affect) than caregivers who completed the study. Next, in order to examine whether attrition characteristics were distributed differentially between the Empathic Coping and Information/Support groups, independent- samples t tests also were performed on pre-test scores for non-completers in each group. T tests tested the null hypothesis that there is no difference between non-completers in the Empathic Coping group and non-completers in the Information/Support group with respect to their mean scores on pre-test measures. Results from this analysis, which are listed in the second column o f Table 7, show no significant differences between the two groups. The sample means on the pre-test measures, which also are displayed in the second column o f Table 7, indicate that non-completers in the Empathic Coping group have similar mean scores to non-completers in the Information/Support group. Collectively, these findings indicate that caregivers who dropped out of the groups had lower well-being at baseline than caregivers who completed the groups, indicating Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. T M 7 MEANS AND STANDARD DEVIATIONS FOR PRE-TEST MEASURES: ENTIRE SAMPLE BY DROPOVT STATUS COMPLETERS NON-COMPLETERS TOTAL SAMPLE Empathic Coping Information/ Support Empathic Coping Information / Support Empathic Coping Information/ Support (n=26) (n=!9) (n-S) (1 1 = 1 1 ) <n=3l) (n=30) VA RIABLE a std ■ std t a aid 1 std 1 a atd B std 1 Quality of Pan Relationship 1.21 2.42 7.26 3.43 1.13 9.00 2.53 7.10 2.51 1.40 8.40 2.42 7.20 3.09 1.61 Deprivation of Intimate Exchange 7.41 2.13 8.79 1.54 ■ 2.21* 7.60 3.36 8.80 2.62 -0.76 7.50 2.31 8.79 1.93 -2.35* Deprivation Oojb + Activitiei 7.11 2.44 8.21 2.07 -0.47 8.00 2.92 9.20 1.75 -1.01 7.90 2.47 8.55 1.99 •1.13 Communal Orientation 49.96 6.52 47.89 8.70 0.91 45.60 9.79 49.50 4.14 -0.85 49.26 7.13 48.45 7.40 0.43 Exchance Orientation 41.46 9,13 39.97 11.45 0.49 44.80 7.05 39.28 8.11 1 .2 1 42.00 1.81 39.73 10.46 0.91 Pcnpcctive Tdung 17.62 3.19 17.81 3.86 -0.19 17.00 1.38 18.91 2.91 •1.36 17.52 2.91 11.21 3.53 •0.84 Empathic Concern 20.31 3.21 20.63 2.56 •0.36 20.20 3.19 20,73 3.23 -0.30 20.29 3.22 20.67 2.77 •0.49 Personal Distress 11.63 3.95 10.65 4.70 0.78 13.20 3.70 9.45 3.72 1.87 11.90 3.89 10.2 1 4.34 1.60 Empathic Coping 37.12 5.19 35.47 6.02 1.31 40.20 4.60 37.82 6.90 0.70 31.20 5.70 36.33 6.34 1.21 Acceptance: Relationship 13.65 2.97 15.68 2.96 -0.03 16.80 2.28 15.45 3.24 0.83 15.14 2.16 15.60 3.01 0.32 Acceptance: Houae Tarin 16.27 2.12 15.79 3.39 0.52 16.00 2.00 15.91 3.42 0.05 16.22 2.68 15.83 3.34 0.51 Acceptance: Social Activity 13.10 2.12 15.26 3,87 0.54 16.00 1.87 15.80 3.61 0.11 15.13 2.66 15.45 3.73 0.46 Instrumental: Relationship 17.15 2.66 14.63 3.06 2.95** 14.20 3.56 14.82 2.99 •0.36 16.68 2.97 14.70 2.98 2,59** Instrumental: House Tasks 16.11 3.02 15.16 4.35 1.57 16.80 2.39 15.00 2.91 1.19 16.17 2.90 15.10 3.86 2.02* Instrumental: Social Activity 16.46 3.41 13.79 4.01 2.41* 15.80 4.21 15.10 3.60 0.34 16.35 3.48 14.24 3.16 2.23* Wishfidncsa: RdatiomNp 10.15 2.75 9.42 2.48 0.92 10.00 2.74 10.82 2.27 •0.63 10.13 2.70 9.93 2.46 0.30 Wishfulncss: Houae Tasks 9.15 2.77 9.58 2.65 0.33 11.00 2.55 10.55 2.25 0.36 10.03 2.72 9.93 2.52 0.15 Wishfulneat: Social Activity 9.62 3.05 9.26 3.12 0.38 10.20 3.11 10.20 1.32 0.00 9.71 3.01 9.59 2.65 0.17 Intrapsychic: Relationship 10 .3 1 2.35 10.84 3.35 -0.63 11.20 4.53 10.64 3.41 0.28 10.45 2.73 10.77 3.32 ■ 0 .4 1 Intrapaychic: House Tasks 10.50 3.02 11.42 3.44 ■ 0 ,9 5 11.80 4.44 12.10 3.60 •0.24 10.71 3,24 11.66 3.45 -1.10 Intrapsychic: Social Activity 11.27 3.26 10.63 4.18 0.58 12.00 5.24 12.40 3.11 •0.17 11.39 3.55 11.24 4.01 0.13 Dyadic Relationship Strain 12.12 6.33 12.11 6.13 0.38 11.40 5.13 12.22 4.47 •0.32 12.59 6.11 12.15 5.50 0.30 Family Relationship Strain 6.73 2.53 6.24 2.76 0.62 7.60 1.67 6.36 3.67 0.71 6.87 2.42 6.28 3.06 0.13 Social Activity Restrictions 7.04 2.52 7.75 2.29 -0.97 9.00 1 .4 1 6.91 3,39 1 .3 1 7,35 2.47 7,44 2.72 -0.13 Carcgivinf Satisfaction 13.92 3.68 13.84 3.56 0.07 13.40 2.97 12.82 3.34 0.33 13.84 3.53 13,47 3.46 0.42 Caveghing Competence 12.19 2.32 12.84 2.93 •0.83 13.00 2.24 12.09 1.58 0.94 12.32 2.29 12.57 2.31 •0.40 Brief Symptom Inventory: Total 37.49 33.11 24.16 18.60 1.72 42.95 17.1 1 29.85 23.59 111 31.37 30.93 26.24 20.36 111 Negative Affect 1.62 1.55 0.97 1.34 1.45 0.80 1.10 2.09 1.58 -1.64 1.41 1.50 1.38 1 .5 1 0.26 Positive Affect 3.50 1.27 2.93 1.50 1.37 1.40 1.67 2.45 1.13 •1.50 3.16 1.53 2.76 1.37 1.01 • p < 0 S ,* * p < 01 109 selective attrition with respect to this variable. In addition, for caregivers in the Empathic Coping group, there was selective attrition on instrumental coping with the relationship with the care-recipient. There was no selective attrition obvious on any other variables, and these two significant differences were not distributed differentially between the Empathic Coping and Information/Support groups in that non-completers in the two groups had comparable scores on all pre-test measures. Power. An estimate o f power using Cohen’s power tables indicates that the reduction in sample size from 61 to 45 resulted in a reduction o f power to detect medium treatment effects from .70 to .50. As a result, 50% of non-significant findings may reflect an undetectable, rather than absent effect. Effects o f Non-randomization In order to evaluate the comparability of the Empathic Coping and Information/Support group completers at baseline, independent-samples t tests were performed on pre-test measures. T tests tested the null hypothesis that the Empathic Coping and Information/Support groups do not differ with respect to mean scores on pre test measures. This analysis, which is shown in the first column o f Table 7, revealed a significant difference between caregivers in the Empathic Coping and Information/Support groups on loss o f exchange o f intimacy with the care-recipient [t (45) = -2.27, p = .023], instrumental coping with stress from their relationship with the care-recipient [t (45) = 2.95, p = .005], and instrumental coping with amount o f participation in social activities [t (45) = 2.41, p = .020], The sample means, which are displayed in Table 7, show that caregivers in the Empathic Coping group more frequently used instrumental coping with Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 110 both their relationship with the care-recipient and with stress from amount o f participation in social activities than caregivers in the Information/Support group. They also experienced less loss o f intimacy with the care-recipient. Collectively, these findings indicate that Empathic Coping and Information/Support groups were different at baseline on two variables expected to show differential change (instrumental coping). These differences were controlled for in subsequent repeated measures analyses after determining that they could not be accounted for fully by differences in the groups on distribution in kin relationship. (These later analyses examining kin relationship are discussed next). Differences in loss o f intimacy were not controlled for in repeated measures analyses because loss o f intimacy was included only as a descriptive variable to characterize the types o f changes caregivers experience in their relationship with the care-recipient. However, the potential impact o f these differences on intervention outcomes is considered in the discussion o f study findings. Because the Empathic Coping and Information/Support groups differed significantly on distribution o f kin relationship, further analyses were performed to evaluate whether group differences in baseline instrumental coping could be explained by group differences in kin relationship. That it, baseline differences between Empathic Coping and Information/Support groups may reflect differences between adult child and spouse caregivers in their use o f instrumental coping. One-way analyses o f covariance (ANCOVA), with group as a between groups factor and kin relationship as the covariate, were performed. ANCOVA tests the null hypothesis that there is no difference between Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Ill the Empathic Coping and Information/Support groups with respect to their mean pre-test scores, after controlling for group differences in the distribution o f adult child and spouse caregivers. Results for the ANCOVA are displayed in Table 8. Analysis o f Covariance (ANCOVAV Comparability o f intervention groups after controlling for kin relationship. As indicated in Table 8, the ANCOVA revealed a significant main effect for group and, for the covariate, on instrumental coping with the relationship with the care-recipient [group: F (1,39) = 13.62, p = .0007; Idn relationship: F (1,39) = 4.54, p = .040], instrumental coping with participation in social activities [group: F (1,39) = 12.49, p = .001; Idn relationship: F (1,39) = 6.53, p = .015] and, instrumental coping with management o f household tasks [group: F (1,39) = 5.39, p = .026; kin relationship: F (1,39) = 4.44, p = .042]. These findings indicate that there are two main effects on instrumental coping, one for group and one for kin relationship, such that the covariate did not explain away non randomization effects. Sample group means show that, on average, caregivers in the Empathic Coping group reported significantly more frequent use of instrumental coping with their relationship with the care-recipient than caregivers in the Information/Support group. Caregivers in the Empathic Coping group also reported more frequent use of instrumental coping with participation in social activities and management of household tasks than caregivers in the Information/Support group. However, spouses in the Empathic Coping group reported higher use o f these strategies than did adult children in the Empathic Coping group. Adult children in the Empathic Coping group were comparable to spouses in the Information/Support group, both o f whom were higher than Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 8 _____________ SUMMARY TABLE FOR ANAL YSES OF COVARIANCE (ANCOVA) FOR PRETEST MEASURES Group Covariate Overall VARIABLE DF F p > F DF F p > F DF F p > F Perspective Taking 1,39 0.00 0.947 1,39 0.13 0.723 2,39 009 0.916 Empathic Concern 1,39 0.31 0.583 1,39 0.73 0.400 2,39 0.40 0.676 Personal Distress 1,39 1.07 0.307 1,39 0.04 0.843 2,39 0.56 0.578 Empathic Coping 1,39 2.06 0.160 1,39 0.60 0.433 2,39 1.06 0.356 Acceptance: Relationship 1,39 0.37 0.549 1,39 3.74 0.060 2,39 1.88 0.166 Acceptance: House Tasks 1,39 1.S8 0.216 1,39 3.37 0.074 2,39 1.87 0.168 Acceptance: Social Activity 1,39 1.35 0.253 1,39 4.13 0.049 * 2,39 2.16 0.129 Instrumental: Relationship 1,39 13.62 0.001 1,39 4.54 0.040 * 2,39 7.12 0.002 ♦* Instrumental: House Tasks 1,39 5.39 0.026 • 1,39 4.44 0.042 * 2,39 3.58 0.038 * Instrumental: Social Activity 1,39 12.49 0.001 1,39 6.53 0.015 • 2,39 7.11 0.002 Wishfulness: Relationship 1,39 0.76 0.388 1,39 1.07 0.307 2,39 0.67 0.517 Wishfulness: House Tasks 1,39 0.28 0.600 1,39 0.01 0.938 2,39 0.19 0.832 Wishfulness: Social Activity' 1,39 0.51 0.477 1,39 0.03 0.874 2,39 0.26 0.769 Intrapsychic: Relationship 1,39 0.47 0.495 1,39 0.44 0,511 2,39 0.73 0.486 Intrapsychic: House Tasks 1,39 0.27 0.606 1,39 0.25 0.617 2,39 0.42 0.659 Intrapsychic: Social Activity’ 1,39 0.33 0.569 1,39 0.00 0.959 2,39 0.21 0.813 Dy adic Relationship Strain 1,39 0.08 0.784 1,39 2.48 0.123 2,39 1.30 0.284 Family Relationship Strain 1,39 1.21 0.277 1,39 9.87 0.003 •• 2,39 4.94 0.012 *• Social Activity Restrictions 1,39 0.75 0.391 1,39 0.67 0.417 2,39 1.15 0.328 Caregiving Satisfaction 1,39 0.04 0.845 1,39 0.31 0.584 2,39 0.15 0.859 Cavegiving Competence 1,39 0.07 0.786 1,39 2.00 0.165 2,39 1.38 0.263 Brief Symptom Inventory: Total 1,39 0.92 0.344 1,39 3.86 0.057 2,39 3.62 0.036 * Negative Affect 1,39 0.17 0.680 1,39 6.24 0.017 * 2,39 4.20 0,022 * Postive Affect 1,39 2.18 0.148 1,39 0.02 0.889 2,39 1.19 0.314 ■ b i. *p< .05; **p< .01; ***p< .001 113 adult children in the Information/Support group. O f particular interest is that adult children in the Information/Support group consistently used the least amount of instrumental coping and this group o f caregivers is the group that is predominantly Black (83% Black vs. 30% or less Black among the adult children in Empathic Coping group and among spouses in both intervention groups). Thus, intervention groups remained unequal at baseline on instrumental coping even after controlling for the effect o f kin relationship, with caregivers in the Empathic Coping group more frequently using instrumental coping with all three stressors than caregivers in the Information/Support group. In the process o f examining whether or not group inequalities in baseline scores could be explained by group differences in the distribution of adult child and spouse caregivers, a serendipitous finding was discovered. The ANCOVA revealed a significant main effect for the covariate, but not for group, on two variables, indicating that the variables are associated with kin relationship. These variables were strain in relationships with other family members [F (1,39) = 9.87, p = .003] and negative affect [F (1,39) = 6.24, p = .017]. On average, adult child caregivers reported significantly higher strain in their relationships with other family members than did spouse caregivers. Adult child caregivers also reported more negative affect than spouse caregivers. Thus, irrespective of whether or not caregivers were in the Empathic Coping or Information/Support group, adult children and spouses were different on relationship strain with other family members and negative affect, suggesting that the caregiving Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 114 experience may be different for spouse and adult child caregivers, and therefore, that spouse and adult child caregivers may have different intervention needs. Independent-samples t tests: Comparability o f intervention groups within kin relationship. Given differences in baseline scores, both between intervention groups and between adult child and spouse caregivers, independent-samples t tests were conducted to evaluate whether or not the two types o f caregivers showed comparable pre-test mean scores across intervention groups; that is, whether or not adult children in the Empathic Coping and Information/Support groups were similar at baseline and, whether or not spouses in the Empathic Coping and Information/Support groups were similar at baseline. If adult children within the two groups were similar to each other and spouses within the two groups were similar to each other, then the non-comparability o f the Empathic Coping and Information/Support groups and between adult children and spouses, when taken as a whole, would no longer be as problematic; between group comparisons could be made for all variables as long as analyses were stratified by kin relationship. However, a consequence o f stratified analyses is a further reduction in power given that power calculations were based on detecting effects for group (two treatment conditions) not for group and kin relationship (four treatment conditions). Table 9 shows the sample means and t test statistic for the independent-samples t tests. Independent-samples t tests: Adult children. For adult children, the two intervention groups differed significantly on mean levels o f instrumental coping with stress from the relationship with care-recipient [t (22) = 3.53, p = .002], instrumental coping with stress from participation in social activities [t (22) = 2.39, p = .027] and on Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced w ith permission o f th e copyright owner. Further reproduction prohibited without permission. T*bk» MEANS AND STANDARD DEVIATIONS FOR PRE-TEST MEASURES: ADULT CHILD AND SPOUSE COMPLETERS ADULT CHILDREN SPOUSES VARIABLE .. „ . Inform ation / Empathic Coping Suppoft (n=l6) (n=6) « std * std \ Empathic Coping (n=7) ■ std Inform ation / Support (n“l3) • std i Quality of Past Relationship 7.81 2.69 7.17 4.54 t = 0.41 9,33 1.64 7.31 3.04 t “ 1.52 Deprivation of Intim ate Exchange 7.31 2.24 9.17 2.04 t = -1.77 7.00 1.73 8.61 1.33 t ■ -2.34* Deprivation Goals + Activities 7.50 2.63 8.50 2.88 I = -0.77 7.86 1.86 8.07 1.71 I = -0.27 Communal O rientation 49.44 7.56 47.67 9.11 t = 0.46 51.29 3.45 48.00 8.89 t =1.18 Exchange Orientation 42.81 9.16 34.39 8.34 t = 1.96 39.00 10.85 42.54 12.05 t - -0.65 Perspective Taking 17.31 3.55 17.83 4.07 t =-0.29 18.14 3.13 17.80 3.93 t = 0.20 Empathic Concern 20.63 3.03 21.33 3.56 t = -0.47 19.86 4.56 20.31 2.06 t = -0.25 Personal Distress 12.31 3.94 9.50 5.13 t = 1.38 11.43 4.12 11.18 4.60 t “ 0.11 Empathic Coping 37.81 609 33.00 5.55 t = 1.69 37.61 5.73 36.62 6.09 t - 0.35 Acceptance: Relationship 15.13 2.60 14.17 2.04 t = 0.81 16.57 3.21 16.38 3.12 t *=0.13 Acceptance: House Tasks 16.06 2.62 13.83 3.49 t= 1.63 17.00 3.11 16.69 3.07 t = 0.21 Acceptance: Social Activity 15.19 2.83 13.33 5.28 t = 0.82 16.81 2.52 16.15 2.85 t * = 0.51 Instrum ental: Relationship 17.06 2.72 12.33 3.01 t = 3,53** 17.86 2.91 15.69 2.53 t= 1.73 Instrum ental: House Tasks 16.56 2.92 12.50 5.09 t = 2.37* 17.86 3.24 16.38 3,52 t “ 0.92 Instrum ental: Social Activity 15.94 3.04 11.50 5.68 t ° 2.39* 18.43 3.21 14.85 2.61 t * = 2.71** Wishfulness: Relationship 10.31 2.77 10.17 1.94 t = 0.1l 10.14 3.02 9.07 2.69 t = 0.81 W ishfulness: House Tasks 10.06 2.59 10.67 2.42 t = -0.49 10.57 2.99 9.08 2.69 t= 1.14 W ishfulness: Social Activity 10.06 2.93 8.83 3.43 t = 0,83 9.43 2.99 9.46 3.10 t =-0.02 Intrapsychic: Relationship 10.63 2.33 11.67 3.44 t = - 0.82 9.86 2.12 10.46 3.38 t = -0.43 Intrapsychic: House Tasks 10.75 3.28 11.50 2.88 t = -0.49 11.00 1.83 11.38 3.78 t = -0.25 Intrapsychic: Social Activity 11.63 3.22 9.83 4.79 t = 1.02 11.00 2.83 11.00 4.02 1 = 0.00 Dyadic Relationship Strain 14.50 6.75 12.50 5.89 t = 0.64 8.86 4.91 11.92 6.46 t = -1.09 Family Relationship Strain 6.69 2.39 8.83 1.60 t = -2.02 5.43 2.23 5.04 2.33 t = 0.36 Social Activity Restrictions 6.25 2.70 8.17 2.23 t = -1.55 8.00 1.83 7.56 2.38 t = 0,43 Caregiving Satisfaction 13.06 3.92 14.83 3.54 t = -0.97 15.57 3.51 13.38 3.62 t= 1.30 Cavegiving Competence 11.63 2.16 12.33 3.72 t = -0.56 13.29 2.75 13.08 2.63 t = 0.17 Brief Symptom Inventory : Total 49.64 36.82 24.83 17.17 t = 1.57 17.29 10.07 23.85 19.89 t = -0.81 Negative Affect 2.13 1.59 1.33 1.51 t= 1.06 0.43 0.79 0.81 1.28 t = -0.71 Positive Affect 3.69 1.30 2.63 1.72 t = 1.57 3.43 1.40 3.08 1.44 t = 0.53 ut *p < .OJ; *»p < .01 116 instrumental coping with stress from management o f household tasks [t (22) = 2.37, p = .028], Sample means show that adult children in the Empathic Coping group used instrumental coping more frequently than adult children in the Information/Support group. O f note is the lack o f a group difference on perceived loss o f intimacy with the care-recipient, a difference that was significant when spouses and adult children were considered together. This lack o f a significant difference on loss o f intimacy among adult children in the Empathic Coping and Information/Support groups is somewhat surprising given: (1) the significant difference among adult child caregivers in the two groups on level o f impairment o f the care-recipient and (2) the fact that dementia is associated with changes in intimacy in relationships. Differences in the distribution o f ethnicity may contribute to this lack o f group difference in loss o f intimacy despite differences in level of impairment, a hypothesis that is explored in greater detail in the discussion section o f this paper. Alternatively, it is possible that a certain threshold o f care-recipient impairment must be crossed for adult child caregivers to experience loss o f intimacy with their parent care-recipient and, that despite the group differential in level of care-recipient impairment, the respective levels o f impairment remain below this threshold. Collectively, the findings indicate that, at baseline, adult children in the Empathic Coping group reported significantly more frequent use of instrumental coping with all three stressors than adult children in the Information/Support group. Because of this baseline difference in instrumental coping, subsequent pre-post test analyses of instrumental coping controlled for this difference. Otherwise, adult children in the two groups were similar on all pre-test measures. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 11 7 Independent-samples t tests: Spouses. For spouses, the two intervention groups differed significantly on mean levels o f instrumental coping with stress from amount o f participation in social activities [t (20) = 2.71, p = .014], The sample means indicate that, at baseline, spouses in the Empathic Coping group reported more frequent use of instrumental coping with stress from participation in social activities than spouses in the Information/Support group. Because o f the baseline difference in instrumental coping with stress from participation in social activities, subsequent pre-post test analyses o f this variable controlled for this difference. Otherwise, spouses in the two groups were similar on all pre-test measures used in repeated measures analyses. However, spouses in the two intervention groups showed a significant difference on mean levels o f a variable not included in pre-post test analyses: perceived loss o f intimacy with the care-recipient[t (20) = -2.34, p = .031], with spouses in the Empathic Coping group reporting less perceived loss o f intimacy with the care-recipient than spouses in the Information/Support group. This difference may not affect pre-post analyses because, among spouses, loss o f intimacy was not significantly associated with other study variables, except for level of impairment, which was comparable in the two groups. Pearson Product-moment Correlations Correlation coefficients were calculated to assess the bivariate interrelationships among the outcome variables at baseline. See Appendix D for the correlation matrix for all the measures among the entire sample o f caregivers. Interrcorrelations provide some indication o f whether or not the study hypotheses will be supported. In addition, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 118 intercorrelations provide information about the degree to which variables may be measuring related, but distinct, constructs or the same underlying construct. This information is important for evaluating change; for example, if several variables change over time in the predicted direction, but are highly correlated, the reason for change is likely to be because they all measure the same underlying construct. Some o f the most notable intercorrelations are highlighted below. The description is organized by variables grouped in Hypothesisla-Hypothesis 3 (as shown in Table 1). With respect to the variables in Hypothesis 1 (a+b), correlations among the coping strategies for managing stress in the relationship with the care-recipient ranged from .30- .45 (absolute value) and were in the expected direction. For example, the maladaptive coping strategies of intrapsychic and wishfulness coping were positively associated with one another and negatively associated with adaptive coping strategies o f instrumental and acceptance coping (both o f which were positively correlated with each other). In addition, the correlations are not high, suggesting that the strategies are related, but distinct, approaches. This assertion is supported by their differential associations with positive (well-being, caregiving competence, caregiving satisfaction) and negative (strain in the relationship with the care-recipient, general psychological distress) outcomes. For example, instrumental coping was positively associated with caregiving satisfaction and positive affect but not associated with general psychological distress whereas acceptance coping was associated with caregiving competence, caregiving satisfaction, psychological well-being and psychological distress. These associations also support the extant literature Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 119 showing that variables that predict mental health and well-being (positive affect) are different from those variables that predict psychological distress. Associations between empathic coping and other variables in Hypothesis 1 were, for the most part, in the predicted direction. The strength o f the correlations ranged .34- .66 (absolute value), with the association between acceptance coping and empathic coping being the highest (r =.66). This latter correlation may indicate that empathic coping and acceptance coping are related constructs. In addition, empathic coping was positively associated with instrumental coping with stress in the relationship with the care- recipient, caregiving satisfaction and caregiving competence. Empathic coping was negatively associated with strain in the caregiver-care-recipient relationship and with wishfulness coping with stress in the relationship with the care-recipient. Finally, empathic coping was positively associated with perspective taking but only weakly, negatively associated with personal distress and, not associated with empathic concern. These associations suggest that perspective-taking is the most important of the three dispositional empathy characteristics for determining empathic coping (also relevant to Hypothesis 4). With respect to the variables included in Hypothesis 2 (a+b), correlations among the coping strategies for managing stress from participation in social activities and management o f household tasks were in the expected direction. The intercorrelations across coping strategies but within domain were not high (e.g. acceptance coping and instrumental coping with management of household tasks), suggesting that the strategies are related but distinct approaches. However, the same coping strategies across domains Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 120 were highly correlated (e.g. instrumental coping with participation in social activities and instrumental coping with management of household tasks). These high intercorrelations suggests that the domain specific subscales are not distinct. However, some specificity is present given that domain specific subscales correlated differently with outcome measures (e.g. wishfulness with participation in social activities was associated with strain from restrictions in social activities whereas wishfulness with management o f household tasks was not associated with strain from restrictions in social activities); and given that the s strength o f the association varied (e.g., wishfulness with participation in social activities was more strongly associated with general psychological distress than wishfulness with management o f household tasks, although general psychological distress is not included in Hypothesis 1). With respectto variables included in Hypothesis 3, intercorrelations were in the expected direction. Positive affect was negatively associated with negative affect and general psychological distress. Negative affect was positively associated with general psychological distress. Given the small to moderate sized intercorrelations among many o f the dependent measures, multivariate analyses rather than individual univariate analyses were considered most appropriate to test study hypotheses. Pre-Post Analyses for Empathic Coping and Information/Support Groups The following analyses were performed to evaluate the first research question of whether or not there are differential benefits between the Empathic Coping and Information/Support groups. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 121 MANOVAs- 2x2 x2 doubly multivariate repeated measures MANOVAS were performed on 24 dependent variables. Dependent variables were grouped according to the study hypotheses. Two, between-subjects independent variables— group (Empathic Coping or Information/Support) and kin relationship (spouse or adult child)— and one, within-subjects independent variable—time (pre-test, post-test scores) were included. Although not part o f the study hypotheses, kin relationship was included in the model given baseline differences between adult children and spouses. The MANOVA tests the null hypotheses that: (1) there is no mean difference between the Empathic Coping and Information/Support groups on the linear combination o f the dependent variables (main effect for group); (2) that there is no mean difference between spouses and adult children on the respective linear combination o f the dependent variables (main effect for kin relationship), (3) that there is no mean difference between pre-test and post-test scores (across groups and kin relationship) (main effect for time) and (4) that change in the pre test-post-test scores for the dependent variables is the same for the two groups and is the same for adult children and spouses (interactions). The multivariate test statistic reported is Wilks’ Lambda (X), or proportion o f variance in the linear combination o f dependent variables not explained by the independent variables. Conversely, eta-square (r|2 ) is the proportion o f variance explained by the independent variable(s) effect. The results from the MANOVA are displayed in Table 10. Hypothesis la . The repeated measures MANOVA failed to reveal a significant multivariate, group *time interaction but the multivariate effect for time was significant [A . = 0.51, F (8, 30) = 3.57, p = .005], The non-significant group*time interaction indicates Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Table 10 E ffect X D F F p>F 122 1 2 H ypothesis la V ariables G roup 0.84 8,30 0.73 0.67 0.16 K in R elationship 0.79 8,30 0.98 0.47 0.21 G roup*K in R elationship 0.82 8,30 0.80 0.61 0.18 Tim e 0.51 8,30 3.57 0.01 • 0.49 G ro u p 'T im e 0.82 8,30 0.80 0.61 0.18 K in R elationship*T im e 0.83 8,30 0.72 0.67 0.17 G roup*R elationship*Tim e 0.73 8,30 1.37 0.25 0.27 H ypothesis lb V ariables G roup 0.79 3,35 3.03 0.04 • 0.21 K in R elationship 0.91 3,35 1.03 0.39 0.09 G roup*K in R elationship 0.93 3,35 0.91 0.44 0.07 Tim e 0.70 3,35 4.89 0.006 • 0.30 G ro u p 'T im e 0.90 3,35 1.30 0.29 0.10 K in R elationship*T im e 0.90 3,35 1.35 0.27 0.10 G roup*R elationship*Tirae 0.90 3,35 1.35 0.27 0.10 H ypothesis 2 a V ariables G roup 0.69 4,33 3.72 0.01 • 0.31 K in R elationship 0.59 4,33 5.79 0.001 • 0.41 G roup*K in R elationship 0.83 4,33 1.73 0.17 0.17 Tim e 0.80 4,33 2.11 0.10 0.20 G roup •T im e 0.95 4.33 0.45 0.77 0.05 K in R elationship*T im e 0.90 4,33 0.91 0.47 0.10 G roup*R eIationship*Tim e 0.83 4,33 1.72 0.17 0.17 H ypothesis 2b V ariables G roup 0.90 6,32 0.60 0.73 0.10 K in R elationship 0.78 6,32 1.49 0.21 0.22 G roup*K in R elationship 0.82 6,32 1.21 0.33 0.18 Tim e 0.69 6,32 2.35 0.05 • 0.31 G roup*Tim e 0.69 6,32 2.37 0.05 • 0.31 K in R elationship*T im e 0.80 6,32 1.35 0.27 0.20 G roup*R elationship*Tim e 0.64 6,32 2.99 0.02 « 0.36 H ypothesis 3 V ariables G roup 0.96 3,35 0.52 0.67 0.04 K in R elationship 0.72 3,35 4.62 0.008 • 0.28 G roup*K in R elationship 0.86 3,35 1.85 0.16 0.14 Tim e 0.97 3,35 0.31 0.82 0.03 G roup*Tim e 0.82 3,35 2.50 0.08 0.18 K in R elationship*T im e 0.93 3,35 0.87 0.47 0.07 G roup*R elationship*Tim e 0.93 3,35 0.84 0.48 0.07 • p < .05 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 123 that Hypothesis la was not supported and there was no differential change between the Empathic Coping and Information/Support groups on the linear combination o f dependent variables, ignoring kin relationship. However, the significant time effect reveals that there was a significant mean change between pre-test and post-test measures when considered simultaneously, averaged across groups and kin relationship; that is, that caregivers in both the Empathic Coping and Information/Support groups changed across time. Hypothesis lb . The repeated measures MANOVA failed to reveal a significant multivariate, group*time interaction although the multivariate effect for time was significant [X = 0.70, F (3, 35) = 4.89, p = .006]. The multivariate effect for group also was significant [X = 0.79, F (3, 35) = 3.03, p = .04]. The non-significant group*time interaction indicates that Hypothesis lb was not supported and there was no differential change between the Empathic Coping and Information/Support groups, ignoring kin relationship. However, the significant time effect reveals that there was a significant mean change between pre-test and post-test measures when considered simultaneously, averaged across groups and kin relationship; that is, that caregivers in both the Empathic Coping and Information/Support groups changed across time. The significant effect for group reveals that, ignoring kin relationship, the Empathic Coping and Information/Support groups were different averaged across time. This finding is consistent with baseline group differences in instrumental coping. Hypotheses 2a. The repeated measures MANOVA failed to reveal a significant multivariate group*time interaction. The multivariate effect for group was significant [X = 0.69, F (4, 33) = 3.72, p = .01] as was the effect for kin relationship [X = 0.59, F (4, 33) = Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 124 S.79, p = .001]. The non-significant group *time interaction indicates that Hypothesis 2a was not supported and there was no differential change between the Empathic Coping and Information/Support groups, ignoring kin relationship. The effect for time was borderline significant (p = . 10), suggesting that with greater power, a time effect would have been detected. The significant effects for group and for kin relationship reveal that, ignoring kin relationship, the Empathic Coping and Information/Support groups were different averaged across time and; that ignoring group, adult children and spouses were different averaged across time. The latter finding is consistent with baseline differences between spouses and adult children on strain in relationships with other family members. Hypothesis 2b. The repeated measures MANOVA revealed a significant multivariate group *time interaction [X = 0.69, F (6, 32) = 2.37, p = .05], indicating support for Hypothesis 2b and differential change between the Empathic Coping and Information/Support groups (ignoring kin relationship). The MANOVA also revealed a significant group*kin relationship*time interaction [X . = 0.64, F (6, 32) = 2.99, p = .02], indicating different patterns of change for adult child and spouse caregivers. Hypothesis 3. The MANOVA failed to reveal a significant time effect indicating that Hypothesis 3 was not supported and that there was no change over time on the outcome variables when considered simultaneously, across group and kin relationship. The significant effect for kin relationship [X . = 0.72, F (3, 35) = 4.62, p = .008], indicates that, ignoring group, spouse and adult child caregivers differed in their average time score (average o f pretest and post-test). This finding is consistent with baseline differences on negative affect. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 125 Summary o f MANOVA results. Collectively, the results from the repeated multivariate analysis o f variance (MANOVA) indicate that, ignoring kin relationship, there was differential change between the Empathic Coping and Information/Support groups on the linear combination o f variables included in Hypothesis 2b. Additionally, both groups changed over time on variables included in Hypotheses la, lb and 2a. Finally, the results from the MANOVA indicate that, ignoring kin relationship, the Empathic Coping and Information/Support groups differed in their average time score (average pre-test, post test score) on variables included in Hypotheses lb and 2a. This group effect is consistent with baseline group differences on instrumental coping. Furthermore, the results indicate that, ignoring group, adult children and spouses differed in their average time score on variables included in Hypothesis 2a and 3. This kin relationship effect is consistent with baseline kin relationship differences in family relationship strain and negative affect. Repeated measures ANOVAs. Univariate repeated measures ANOVAs, stratified by kin relationship, were performed as follow-up analyses for significant multivariate effects. Group was the independent variable and pre-test-post-test scores were the repeated measures factor. Analyses were stratified by kin relationship rather than including kin relationship as a second independent factor to enable examination of the patterns o f change among adult children and spouses separately. A Bonferroni correction for a family-wise Type I error rate o f . 15 was made. Dependent variables in the primary hypotheses were set at a relatively more liberal alpha (.009) whereas dependent variables in the exploratory analyses were set at a more stringent alpha (.001). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 126 Adult Children. Results for the repeated measures ANOVAs for adult children are shown in Table 11A. Means and standard deviations for the pre-test and post-test measures are shown in Table 12A. Hypothesis la . Using the adjusted alpha value o f .009, the analyses revealed a significant main effect for time on perceived competence with caregiving ([F (1,19) = 11.11, p = .004]. Hypothesis lb. Using the adjusted alpha value of .001, the analyses revealed a significant main effect for time on instrumental coping with stress in the relationship with the care-recipient [F (1,19) = 14.22, p = .001], Hypothesis 2a. The analyses failed to reveal significant findings at the adjusted alpha level o f .009. Hypothesis 2b. The analyses revealed a nearly significant group*time interaction for intrapsychic coping with social activities [F (1,19) = 9.94, p = .005] at the adjusted alpha level o f .001. Adult children in the Information/Support group increased their use o f intrapsychic coping with participation in social activities whereas adult children in the Empathic Coping group decreased their use. Hypothesis 3. The analyses failed to reveal effects significant at the adjusted alpha value of .009. Summary of Repeated measures ANOVAs for adult children. Collectively, the Repeated measures ANOVAs indicate that adult children in both the Empathic Coping and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 11A SUMMARY TABLE FOR REPEATED MEASURES ANOVA: ADULT CHILDREN VARIABLE DF Group F p> F DF Time F p > F DF Group * Time F p> F Perspective Taking 1,19 0.38 0.546 1,19 0.97 0.337 1.19 0.51 0.485 Empathic Concern 1,19 0.38 0.546 1,19 0.69 0.418 1,19 0.05 0.818 Personal Distress 1,19 1.26 0.276 1.19 0.97 0.337 1,19 1.86 0.189 Empathic Coping 1,19 2.90 0.105 1.19 3.19 0.090 1,19 0.08 0.774 Acceptance: Relationship 1,19 0.91 0.352 1.19 3.85 0.065 1,19 0.34 0.569 Acceptance: House Tasks 1,19 3.11 0.094 1,19 1.35 0.260 1.19 0.00 0.952 Acceptance: Social Activity 1,19 0.00 0.957 1.19 4.36 0.050 * 1,19 4.36 0.050 * Relationship: Instrumental 1,19 7.57 0.013 • 1,19 14.22 0.001 1,19 1.1 0.306 Instrumental: House Tasks 1,19 4.05 0.059 1.19 6.02 0.024 ♦ 1.19 1.38 0.255 Instrumental: Social Activity 1,19 5.62 0.029 • 1,19 5.44 0.031 * 1.19 0.15 0.704 Wishfulness: Relationship 1,19 0.29 0.597 1,19 1.41 0.250 1.19 0.45 0.510 Wishfulness: House Tasks 1,19 1.28 0.272 1,19 4.73 0.043 * 1.19 1.22 0.283 Wishfulness: Social Activity 1.19 0.08 0.784 1,19 0.64 0.043 * 1.19 1.79 0.200 Intrapsychic: Relationship 1,19 0.00 0.955 1.19 0.00 1.000 1,19 4.40 0.050 • Intrapsychic: House Tasks 1,19 0.23 0.636 1,19 0.50 0.489 1.19 0.00 1.000 Intrapsychic: Social Activity 1,19 0.00 0.957 1,19 1.63 0.217 1.19 9.94 0.005 ** Dyadic Relationship Strain 1,19 0.00 0.947 1,19 0.86 0.365 1,19 1.84 0.190 Family Relationship Strain 1,19 6.18 0.022 * 1.19 0.00 0.979 1,19 0.68 0.419 Social Activity Restrictions 1,19 4.16 0.055 1,19 0.66 0.428 1,19 0.03 0.869 Caregiving Satisfaction 1,19 0.08 0.785 1,19 5.99 0.024 * 1,19 7.15 0.015 * Cavegiving Competence 1,19 0.20 0.661 1,19 11.11 0.004 ** 1,19 0.09 0.765 Brief Symptom Inventory: Total 1,19 1.57 0.225 1,19 1.43 0.247 1,19 2.16 0.158 Negative Affect 1,19 0.65 0.430 1,19 0.61 0.444 1,19 0.61 0.444 Postive Affect 1,19 0.92 0.348 1.19 2.25 0.150 1,19 1.74 0.203 •p < .05; **p< . 01; * " p < . 001 3 Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Ttblt 12A MEANS AND STANDARD DEVIATIONS FOR PRE-TEST AND POST-TEST MEASURES: ADULT CHILDREN ADULT CHILDREN Empathic Coping (n = 15) Information / Support (n = = 6) Pre-test Post-test Pre-test Post-test VARIABLE X std x std X std X std Deprivation of Intimate Exchange 7.31 2.24 7.13 2.07 9.17 2.04 8.83 2.93 Deprivation Goals + Activities 7.50 2.63 7.07 2.12 8.50 2.88 8.17 3.07 Perspective Taking 17.31 3.55 17.13 4.64 17.83 4.07 18.67 4.32 Empathic Concern 20.63 3.03 21.07 3.67 21.33 3.56 22.17 3.82 Personal Distress 12.31 3.94 10.73 4.35 9.50 5.13 9.83 5.00 Empathic Coping 37.81 6.09 39.33 5.38 33.00 5.55 35.50 4.93 Acceptance: Relationship 15.13 2.60 16.33 2.38 14.17 2.04 15.00 3.35 Acceptance: House Tasks 16.06 2.62 16.47 2.03 13.83 3.49 14.50 3.02 Acceptance: Social Activity 15.19 2.83 15.07 1.92 13.33 5.28 16.67 2.80 Instrumental: Relationship 17.06 2.72 18.93 2.91 12.33 3.01 16.00 5.06 Instrumental: House Tasks 16.56 2.92 17.53 3.18 12.50 5.09 15.33 4.27 Instrumental: Social Activity 15.94 3.04 17.93 3.83 11.50 5.68 14.67 5.16 Wishfulness: Relationship 10.31 2.77 8.87 2.10 10.17 1.94 9.83 3.07 Wishfulness: House Tasks 10.06 2.59 8.40 2.44 10.67 2.42 10.17 2.23 Wishfulness: Social Activity 10.06 2.93 8.67 1.76 8.83 3.43 9.17 3.66 Intrapsychic: Relationship 10.63 2.33 11.73 2.25 11.67 3.44 10.67 3.01 Intrapsychic: House Tasks 10.75 3.28 11.13 2.77 11.50 2.88 11.83 3.76 Intrapsychic: Social Activity 11.63 3.22 10.60 2.50 9.83 4.79 12.67 3.08 Dyadic Relationship Strain 14.50 6.75 11.60 4.98 12.50 5.89 13.00 6.96 Family Relationship Strain 6.69 2.39 5.93 3.43 8.83 1.60 9.33 2.50 Social Activity Restrictions 6.25 2.70 5.67 2.22 8.17 2.23 7.46 2.40 Caregiving Satisfaction 13.06 3.92 12.87 4.66 14.83 3.54 11.83 4.17 Cavegiving Competence 11.63 2.16 13.93 1.83 12.33 3.72 14.17 1.94 Brief Symptom Inventory: Total 49.64 36.82 30.80 20.97 24.83 17.17 26.89 27.91 Negative Affect 2.13 1.59 1.47 1.41 1.33 1.51 1.33 1.21 Positive Affect 3.69 1.30 3.73 1.33 2.63 1.72 3.67 1.51 128 129 Information/Support groups increased in perceived caregiving competence and increased their use o f instrumental coping with stress in their relationship with the care-recipient. In addition, adult children in the Information/Support group increased their use of intrapsychic coping with participation in social activities whereas adult children in the Empathic Coping group decreased their use. Spouses. Results for the repeated measures ANOVAs for spouses are shown in Table 1 IB. Means and standard deviations for the pre-test and post-test measures are shown in Table 12B. Hypothesis la . The analyses failed to reveal findings significant at the adjusted alpha level o f .009. Hypothesis lb . The analyses failed to reveal findings significant at the adjusted alpha level o f .001. Hypothesis 2a. The analyses failed to reveal findings significant at the adjusted alpha level o f .009. Hypotheses 2b. The analyses failed to reveal findings significant at the adjusted alpha level o f .001. Hypothesis 3. The analyses failed to reveal findings significant at the adjusted alpha level o f .001. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. T iblcD B SUMMARY TABLE FOR REPEATED MEASURESANOVA: SPOUSES VARIABLE DF Group F p> F DF Time F p > F DF Group * Time F p> F Perspective Taking 1,18 0.02 0.888 1,18 0.75 0.340 1,18 2.85 0.109 Empathic Concern 1,18 0.09 0.764 1,18 1.71 0.207 1,18 0.00 0.970 Personal Distress 1,18 0.00 0.980 1,18 0.62 0.442 1,18 0.17 0.686 Empathic Coping 1,18 0.30 0.591 1,18 0.56 0.466 1,18 0.04 0.841 Acceptance: Relationship 1,18 0.01 0.927 1,18 1.36 0.260 1,18 0.01 0.913 Acceptance: House Tasks 1,18 0.02 0.878 1,18 1.31 0.267 1,18 0.05 0.827 Acceptance: Social Activity 1,18 0.35 0.559 1,18 3.94 0.063 1,18 0.04 0.836 Instrumental: Relationship 1,18 1.15 0.297 1,18 1.81 0.195 1,18 0.51 0.483 Instrumental: House Tasks 1,18 1.99 0.176 1.18 2.88 0.107 1,18 2.88 0.107 Instrumental: Social Activity 1,18 4.17 0.056 1,18 0.14 0.717 1,18 0.31 0.582 Wishfulness: Relationship 1.18 1.16 0.2% 1,18 0.55 0.469 1,18 0.94 0.345 Wishfulness: House Tasks 1,18 0.42 0.525 1.18 7.33 0.014 •* 1,18 1.89 0.187 Wishfulness: Social Activity 1,18 0.03 0.859 1,18 0.70 0.414 1,18 0.30 0.589 Intrapsychic: Relationship 1,18 0.23 0.635 1.18 0.91 0.352 1,18 0.00 0.972 Intrapsychic: House Tasks 1,18 0.01 0.942 1,18 1.06 0.317 1,18 0.26 0.617 Intrapsychic: Social Activity 1,18 0.09 0.765 1.18 3.95 0.062 1,18 1.53 0.232 Dyadic Relationship Strain 1,18 0.90 0.355 1,18 0.43 0.522 1,18 0.70 0.414 Family Relationship Strain 1,18 0.01 0.925 1.18 0.44 0.516 1,18 0.58 0.458 Social Activity Restrictions 1,18 0.00 0.957 1,18 1.35 0.262 1,18 0,13 0,734 Caregiving Satisfaction 1,18 0.85 0.369 1,18 0.91 0.354 1,18 0.91 0.354 Cavegiving Competence 1,18 0.15 0.700 1,18 2.98 0.101 1,18 0.07 0.800 Brief Symptom Inventory: Total 1,18 0.93 0.347 1,18 0.20 0,660 1,18 0.22 0.641 Negative Affect 1,18 0.67 0.424 1,18 0.01 0.939 1,18 0.01 0.939 Postive Affect 1,18 0.03 0.860 1,18 0.31 0.583 1,18 0.45 0.512 130 Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Tible I2B MEANS AND STANDARD DEVIATIONS FOR PRE-TEST AND POST-TEST MEASURES: SPOUSES SPOUSES Empathic Coping (n = 7) Information / Support (n = 13) Pre-test Post-test Pre-test Post-test VARIABLE X std i std X std X std Deprivation of Intimate Exchange 7.00 1.73 7.86 2.34 8.61 1.33 8.38 2.26 Deprivation Goals + Activities 7.86 1.86 9.43 1.27 8.07 1.71 8.76 1.83 Perspective Taking 18.14 3.13 17.29 2.21 17.80 3.93 18.07 3.57 Empathic Concern 19.86 4.56 20.43 3.64 20.31 2.06 20.85 2.97 Personal Distress 11.43 4.12 10.86 5.40 11.18 4.60 11.00 4.22 Empathic Coping 37.61 5.73 38.71 4.50 36.62 6.09 37.24 4.87 Acceptance: Relationship 16.57 3.21 17.14 3.18 16.38 3.12 17.08 3,09 Acceptance: House Tasks 17.00 3.11 17.57 2.37 16.69 3.07 17.54 2.10 Acceptance: Social Activity 16.81 2.52 17.57 2.44 16.15 2.85 16.77 2.80 Instrumental: Relationship 17.86 2.91 18.29 3,99 15.69 2.53 17.10 4.58 Instrumental: House Tasks 17.86 3.24 19.57 3.64 16.38 3.52 16.38 4.05 Instrumental: Social Activity 18.43 3.21 18.29 4.15 14.85 2.61 15.54 4.45 Wishfulness: Relationship 10.14 3.02 10.71 2.75 9.07 2.69 9,00 2.94 Wishfulness: House Tasks 10,57 2.99 8.57 3,05 9.08 2.69 8.42 2.97 Wishfulness: Social Activity 9.43 2.99 9.29 3.35 9.46 3.10 8.77 2.89 Intrapsychic: Relationship 9.86 2.12 10.29 2.63 10.46 3.38 10.92 2.90 Intrapsychic: House Tasks 11.00 1.83 10.71 2.81 11.38 3.78 10.54 3.41 Intrapsychic: Social Activity 11.00 2.83 10.71 2.36 11.00 4.02 9.77 3.49 Dyadic Relationship Strain 8.86 4.91 9.00 4.32 11.92 6.46 10.77 5.78 Family Relationship Strain 5.43 2.23 4.86 2.19 5.04 2.33 5.08 1.66 Social Activity Restrictions 8.00 1.83 7.71 2.36 7.56 2.38 7.54 1.88 Caregiving Satisfaction 15.57 3.51 14.29 3.30 13.38 3.62 13.38 4.46 Cavegiving Competence 13.29 2.75 14.43 1.81 13.08 2.63 13.92 1.89 Brief Symptom Inventory: Total 17.29 10.07 17.20 11.29 23.85 19,89 27.00 25.09 Affect Balance: Negative 0.43 0.79 0.43 0.53 0.81 1.28 0.85 1.41 Affect Balance: Positive 3.43 1.40 3.00 1.91 3.08 1.44 3.12 1.63 132 Summary o f Repeated measures ANOVAs for spouses. Collectively, the repeated measures ANOVAs indicated that spouses in the Empathic Coping and Information/Support group showed no significant change over time. Summary. In combination, the results from the MANOVA and repeated measures ANOVAs suggest that adult child caregivers in both the Empathic Coping and Information/Support groups changed over time on select outcome variables (competence, instrumental coping), whereas spouses showed no change. Among adult children, caregivers in the Empathic Coping group appeared to derive greater benefits from the intervention than caregivers in the Information/Support group. This differential among adult children also is evident in effect size calculations and within-group comparisons (paired-samples t tests). Paired-samples t Tests. Paired-samples t tests, stratified by kin relationship, were performed to explicate the nature o f change within the two intervention groups. Paired-samples t tests test the null hypothesis that the average difference score (post-test minus pre-test) is approximately equal to zero. Analyses were stratified given the baseline differences between adult children and spouses and findings from the repeated measures ANOVAs. The paired-samples t tests were performed as a guide for future research and thus, Bonferroni corrections were not applied. Empathic Coping group: Adult Children. The results for the paired-samples t tests for adult children within the Empathic Coping group are reported in Table 13 A. Hypothesis la . The analyses revealed a significant difference between mean levels on perceived competence with caregiving [t (15) = 3.51, p = .004] and acceptance coping Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. T M I 1 A MEAN DIFFERENCE SCORES AND STANDARD ERROR FOR PAiRED-SAMPLES T TESTS: EMPATHIC COPING EMPATHIC COPING VARIABLE i Adult Children (n=15) Std error psign rank a std error Spouses (n=7) t p>M Prign rank Deprivation of Intimate Exchange 0.00 0.58 0.00 1.000 0.924 0.86 0.70 1.22 0.270 0.313 Deprivation Goals + Activities -0.47 0.58 -0.81 0.432 0.424 1.57 0.53 2.98 0,025 • 0.063 Penpective Taking 0.13 0.58 0.23 0.820 0.100 •0.86 0.59 -1.44 0.200 0.281 Empathic Concern 0.47 0.86 0.55 0.594 0.588 0.57 0.69 0.83 0.436 0.563 Personal Distress -2.07 1.06 -1.95 0.072 0.055 -0.57 0.90 41.64 0.547 0.531 Empathic Coping 1.80 1.23 1.45 0.168 0.104 1.11 1.74 0.64 0.547 0.578 Acceptance: Relationship 1.53 0.65 2.37 0.033 • 0.022 * 0.57 0.69 0.83 0.440 0.625 Acceptance: House Tasks 0.60 0.58 1.04 0.315 0.324 0.57 0.61 0.93 0.386 0.750 Acceptance: Social Activity 0.00 0.65 0.00 1.000 0.781 0.76 0.50 1.53 0.180 0.250 Instrumental: Relationship 2.07 0.85 2.44 0.029 • 0.042 • 0.43 0.72 0.60 0.573 0.688 Instrumental: House Tasks 1.00 0.88 1.13 0.277 0.276 1.71 0.36 4.77 0.003 •• 0.031 ' Instrumental: Social Activity 2.27 0.99 2.28 0.039 • 0.031 • -0.14 0.80 -0.18 0.864 0.938 Wishfulness: Relationship -1.20 0.69 -1.74 0.105 0.096 0.57 0.37 1.55 0.172 0.313 Wishfulness: House Tasks -1.53 0.42 •3.62 0,003 ** 0.004 ** •2.00 0.62 •3.24 0.018 ' 0.031 ' Wishfulness: Social Activity -1.33 0.75 -1.78 0.096 0.077 -0.14 0.80 •0.18 0.864 1.000 Intrapsychic: Relationship 1.00 0.44 2.29 0.038 * 0.054 * 0.43 1.00 0.43 0.682 0.781 Intrapsychic: House Tasks 0.33 0,44 0.75 0.465 0.727 -0.29 0.84 •0.34 0.745 0.593 Intrapsychic: Social Activity •1.20 0.63 -1.89 0.079 0.103 ■0.29 0.57 -0.51 0.631 0.813 Dyadic Relationship Strain -2.67 1.40 •1.91 0.078 0.056 0.14 1.28 0.11 0.915 0.688 Family Relationship Strain •0.53 0.66 -0.81 0.433 0.530 -0.57 0.37 1.55 0.172 0.313 Social Activity Restrictions -0.47 0.85 -0.55 0.592 0.805 -0.29 0.64 •0.44 0.673 0.750 Caregiving Satisfaction 0.13 0.58 0.23 0.820 0.874 -1.29 0.57 -2.27 0.063 0.125 Cavegiving Competence 2.20 0.63 3.51 0.004 *• 0.005 *• 1.14 0.88 1.29 0.244 0.500 Brief Symptom Inventory: Tout •19,75 8.39 -2.35 0.034 • 0.043 • 41.09 1.58 -0.06 0.950 0.734 Negative Affect •0.67 0.47 -1.40 0.182 0.223 0.00 0.38 0.00 1.000 1.000 Positive Affect 0.07 0.37 0.18 0.860 0.957 -0.43 0.48 -0.89 0.407 0.438 *p< 05;**‘ p< 01 133 134 with stress in the relationship with the care-recipient [t (15) = 2.37, p = .033]. Consistent with predictions, scores on perceived competence with caregiving and acceptance coping were significantly higher at post-test than at pre-test. O f note is that, in the present sample, acceptance coping with the relationship with the care-recipient was positively correlated with empathic coping (r=.66) suggesting related constructs. The fact that acceptance coping increased suggests that the intervention altered how adult child caregivers approach their relationship with their parent care-recipient and that acceptance may be a requisite first step to being empathic. Consistent with this assertion are borderline significant declines in dyadic relationship strain [t (15) = -1.91, p = .078] and personal distress from seeing others in need [t (15) = -1.95, p = .072]. Hypothesis lb . The analyses revealed significant effects for instrumental coping with stress in the relationship with the care-recipient [t (15) = 2.44, p = .029] and a intrapsychic coping with stress in the relationship with the care-recipient [t (15) = 2.29, p = .038]. Sample means show that scores were in the expected direction for instrumental coping (i.e., higher at post-test than pretest) but not for intrapsychic coping (i.e., higher at posttest than pretest). Hypothesis 2a. The analyses revealed a significant effect for instrumental coping with participation in social activities [t (15) = 2.28, p = .039], with scores higher at post test than at pre-test. (Though the magnitude of change was smaller than that observed for adult children in the Information/Support group, as predicted). Hypothesis 2b. The analyses revealed a significant difference between mean levels on wishfulness with management of household tasks [t (15) = -3.62, p = .003]. Sample Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 135 means show that scores on wishfulness with management o f household tasks were significantly lower at post-test than at pre-test. (The magnitude o f change was larger than that observed for adult children in the Information/Support group, contrary to prediction). Hypothesis 3. The analyses revealed a significant difference between mean levels on general psychological distress [t (15) = -2.35, p = .034], with scores lower at post-test than pre-test, as predicted. Summary o f paired-samples t tests for adult children in Empathic Coping group. The results o f the paired-samples t tests for adult children in the Empathic Coping group indicate that, over time, adult children increased their perceived competence with caregiving. In addition, adult children increased their use o f acceptance, instrumental and intrapsychic coping with their relationship with the care-recipient; increased their use of instrumental coping with participation in social activities; and decreased their use of wishfulness coping with household tasks. They also showed decreased levels of general psychological distress. Finally, they evidenced borderline significant declines in dyadic relationship strain and personal distress from seeing others in need. Empathic Coping group: Spouses. The results for the paired-samples t tests for spouses within the Empathic Coping group are reported in Table 13 A. Hypothesis la . The analyses failed to reveal a significant difference between pre test and post-test mean levels. Hypothesis lb . The analyses failed to reveal a significant difference between pre test and post-test mean levels. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 136 Hypothesis 2a. The analyses revealed a significant difference between mean levels on instrumental coping with management o f household tasks [t (IS) = 3.51, p = .003], with scores on instrumental coping higher at post-test than at pre-test. (The magnitude of change was larger than that observed for spouses in the Information/Support group, contrary to prediction). Hypothesis 2b. The analyses revealed a significant effect for wishfiilness with management of household tasks [t (IS) = -3.24, p = .018], with scores lower at post-test than at pre-test. (The magnitude o f change was larger than that observed for spouses in the Information/Support group, contrary to prediction). Hypothesis 3. The analyses failed to reveal a significant difference between pre-test and post-test mean levels. One additional difference is noted. Though not included in the testing o f the hypotheses, scores on perception o f loss o f shared goals and activities with the care- recipient increased. Summary o f paired-samples t tests for spouses in Empathic Coping group. The results o f the paired-samples t tests for spouses in the Empathic Coping group indicate that, over time, spouses increased their use o f instrumental coping with household tasks and decreased their use o f wishfiilness with household tasks. They also experienced greater perceived loss o f shared goals and activities with the care-recipient. Information/Support group: Adult Children. The results for the paired-samples t tests for adult children within the Information/Support group are reported in Table 13B. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Table 13B M EAN D IFFERENCE SCORES AND STANDARD ERROR FOR PAIRED-SAM PLES T TESTS: INFORMATION/SUPPORT_________________________________ 137 INFORM ATION / SUPPO RT VA RIA BLE X A dult Children (n=6) std t p > |t | error r p sig n rank X std error Spouses (n=13) t p > |t | p sig n rank Deprivation o f Intim ate Exchange -0.33 1.23 -0.27 0.797 0.875 -0.23 0.48 -0.48 0.640 1.000 Deprivation G oals + A ctivities -0.33 1.15 -0.29 0.783 0.563 0.69 0.31 2.25 0.044 * 0.074 Perspective T aking 0.83 0.54 1.54 0.185 0.313 0.27 0.38 0.73 0.479 0.406 Em pathic C oncern 0.83 1.25 0.67 0.534 0.688 0.54 0.50 1.07 0.300 0.433 Personal D istress 0.33 0.71 0.47 0.661 0.813 -0.18 0.51 -0.35 0.730 0.766 Em pathic C oping 2.50 2.20 1.12 0.314 0.375 0.63 1.43 0.44 0.667 0.393 Acceptance: R elationship 0.83 1.01 0.82 0.449 0.500 0.69 0.70 0.99 0.343 0.344 Acceptance: H ouse Tasks 0.67 0.95 0.70 0.516 0.625 0.85 0.84 1.01 0.333 0.203 Acceptance: Social A ctivity 3.33 1.99 1.67 0.156 0.250 0.62 0.43 1.43 0.180 0.230 Instrum ental: R elationship 3.67 1.12 3.29 0.022 '• 0.063 1.40 0.91 1.54 0.150 0.119 Instrumental: H ouse Tasks 2.83 1.08 2.63 0.047 « • 0.063 0.00 0.71 0.00 1.000 0.855 Instrumental: Social A ctivity 3.17 2.80 1.13 0.309 0.375 0.69 1.00 0.70 0.500 0.785 W ishfiilness: R elationship -0.33 1.09 -0.31 0.771 0.344 -0.08 0.45 -0.17 0.866 0.922 W ishfiilness: H ouse Tasks -0.50 1.06 -0.47 0.656 0.813 -0.65 0.63 -1.03 0.323 0.391 W ishfiilness: Social A ctivity 0.33 0.56 0.60 0.576 0.750 -0.69 0.59 -1.17 0.265 0.301 Intrapsychic: R elationship -1.00 1.06 -0.94 0.391 0.500 0.46 0.43 1.07 0.307 0.387 Intrapsychic: H ouse T asks 0.33 1.02 0.33 0.758 1.000 -0.85 0.67 -1.27 0.223 0.281 Intrapsychic: Social A ctivity 2.83 1.28 2.22 0.077 0.125 -1.23 0.47 -2.62 0.022 ' ’ 0.023 ' Composite: W ishfiilness -0.50 2.33 -0.21 0.839 0.750 -1.42 1.15 -1.23 0.239 0.311 Composite: A cceptance 4.83 2.14 2.26 0.073 0.031 • 2.15 1.67 1.29 0.222 0.246 Composite: Intrapsychic 2.17 2.87 0.76 0.484 0.656 -1.62 1.08 -1.49 0.162 0.209 Composite: Instrum ental 9.67 4.22 2.29 0.071 0.031 • 2.10 2.29 0.92 0.378 0.311 Dyadic R elationship Strain 0.50 1.02 0.49 0.646 0.750 -1.15 0.90 -1.28 0.226 0.226 Family R elationship Strain 0.50 1.09 0.46 0.665 0.750 0.04 0.55 0.07 0.945 0.906 Social Activity R estrictions -0.71 0.81 •0.88 0.420 0.625 -0.54 0.40 -1.37 0.199 0.297 Caregiving Satisfaction -3.00 1.18 -2.54 0.052 * 0.093 0.00 0.93 0.00 1.000 0.754 Cavegiving C om petence 1.83 1.11 1.65 0.159 0.250 0.85 0.70 1.21 0.248 0.281 B rief Symptom Inventory: Total 2.06 10.15 0.20 0.848 1.000 3.15 4.89 0.64 0.530 0.925 Negative Affect 0.00 0.63 0.00 1.000 1.000 0.04 0.30 0.13 0.900 1.000 Positive A ffect 1.04 0.72 1.45 0.208 0.250 0.04 0.44 0.09 0.932 0.750 •p < .05 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 138 Hypothesis la . The analyses revealed a significant difference between mean levels on satisfaction with caregiving [t (15) = -2.54, p = .052], with scores lower at post-test than at pre-test. Hypothesis lb. The analyses revealed a significant difference between mean levels on instrumental coping with the relationship with the care-recipient [t (15) = 3.29, p = .022], with scores on instrumental coping higher at post-test than at pre-test. (The magnitude o f change was larger than that observed for adult children in the Empathic Coping group, contrary to prediction, although adult children in the Empathic Coping group started at higher baseline levels). Hypothesis 2a. The analyses revealed a significant difference between mean levels on instrumental coping with management of household tasks [t (6) = 2.63, p = .047], with scores on instrumental coping higher at post-test than at pre-test. (The magnitude of change was larger than that observed for adult children in the Empathic Coping group, as predicted, although adult children in the Empathic Coping group started at higher baseline levels). Hypothesis 2b. The analyses failed to reveal a significant difference between pre test and post-test mean levels. Hypothesis 3. The analyses failed to reveal a significant difference between pre-test and post-test mean levels. Summary of paired-samples t tests for adult children in Information/Support group. The results o f the paired-samples t tests for adult children in the Information/Support group indicate that, over time, adult children increased their use of Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 139 instrumental coping with the relationship with the care-recipient and their use of instrumental coping with management of household tasks. They also decreased in their satisfaction with caregiving. Information/Support: Spouses. The results for the paired-samples t tests for spouses within the Information/Support group are reported in Table 13B. Hypothesis la . The analyses failed to reveal a significant difference between pre test and post-test mean levels. Hypothesis lb . The analyses failed to reveal a significant difference between pre test and post-test mean levels. Hypothesis 2a. The analyses failed to reveal a significant difference between pre test and post-test mean levels. Hypothesis 2b. The analyses revealed a significant difference between the mean levels on intrapsychic coping with participation in social activities [t (15) = -2.62, p = .022], with scores on intrapsychic coping lower at post-test than at pre-test. (The magnitude of change was larger than that observed for spouses in the Empathic Coping group, as predicted). Hypothesis 3 . The analyses failed to reveal a significant difference between pre-test and post-test mean levels. One additional difference is noted. Though not included in the testing o f the hypotheses, scores on perception of loss of shared goals and activities with the care- recipient increased. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 140 Summ ary of paired-samples t tests for spouses in Information/Support group. The results o f the paired-samples t tests for spouses in the Information/Support group indicate that, over time, spouses showed decreased use o f intrapsychic coping with participation in social activities. They also experienced greater perceived loss o f shared goals and activities with the care-recipient. Wilcoxon Matched Pairs Signed-Ranks Test. Because several of the p-values for the paired-samples t tests were of borderline significance, the Wilcoxon matched pairs signed-ranks test was performed. This test ranks the difference and tests the differences in the rank. The signed-ranks test was performed because in the case of borderline p-values, violations o f assumptions o f normality can have a large effect on the p-value. The Shapiro Wills test for the normality o f the distribution o f the difference scores indicated that some o f the difference scores were not normally distributed. The validity o f the signed-ranks test is not affected by whether or not the distribution o f the variables are normal. However, for those variables for which the difference scores were normally distributed, the test is not as powerful. The p-values for this test-statistic also are reported in Tables 13A-13B. As seen in Tables 13A-13B, results from the signed-ranks test were not much different from the paired-samples t tests. Summary. Collectively, results from the paired-samples t tests indicate that adult children in the Empathic Coping group increased their overall coping efforts with stress in their relationship with their parent care-recipient. They also changed their use of select coping strategies with other stressors. These changes in coping responses were accompanied by an increase in perceived competence with caregiving, a decrease in Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 141 general psychological distress (and a borderline significant decline in dyadic relationship strain), suggesting that the caregivers are managing the stressors more effectively. Spouses in the Empathic Coping group showed much more limited change in coping efforts (limited to stress with household tasks); this change, not only was not associated with concomitant changes in mental health variables, but it was associated with an increase in perception o f loss o f shared goals and activities with the care-recipient. This increase intimates that spouse caregivers are being made more aware of the diminished capacities o f the care-recipient (though, curiously, there was no concomitant change in perception o f loss o f intimacy, implying that the awareness is not negatively impacting their current ability to experience intimacy with the care-recipient). The different patterns o f change for the adult children and spouses within the Empathic Coping group implies that the group may be more appropriate for adult child caregivers. With respect to the Information/Support group, results from the paired-samples t tests indicate that adult children in the Information/Support group increased their use of select coping efforts (instrumental coping) within two stress domains; however, these efforts were not associated with a change in mental health outcomes. Spouses in the Information/Support group showed the smallest degree of change in coping efforts (one approach in one stress domain). Interestingly, they showed a similar pattern o f change on perception o f shared goals and activities with the care-recipient, to the spouse caregivers in the Empathic Coping group. Overall Summary. Some general conclusions can be drawn from the combined results o f the multivariate, univariate and paired-samples t tests analyses. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 142 Adult children in both groups changed over time on select variables whereas spouses showed virtually no change. Adult children also entered the study with lower well-being, borderline lower psychological distress and greater strain in their relationships with other family members suggesting that this differential change might be explained by regression to the mean. However, regression to the mean is unlikely to account fully for adult children’s differential improvement over spouses given that most o f the change was accounted for by increases in instrumental coping with stress in their relationship with the care-recipient and perceived competence with caregiving. Among adult children, caregivers in the Empathic Coping group showed an increase in acceptance and intrapsychic coping strategies with their relationship with their parent care-recipient whereas caregivers in the Information/Support group did not. In addition, caregivers in the Information/Support group showed a decrease in satisfaction with caregiving whereas caregivers in the Empathic Coping group did not. Adult child caregivers in both groups increased in coping effectiveness with select stressors in other domains. Spouses in both groups demonstrated limited improvements in coping effectiveness, with spouses in the Empathic Coping group showing improved coping with stress from management of household tasks and spouses in the Information/Support group showing improved coping with stress from participation in social activities. Empathic Coping at Baseline The following analyses were performed to evaluate the second research question o f whether certain characteristics of caregivers predict empathic coping at baseline. This question was addressed with Hypothesis 4. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 143 Multiple Regression. Bivariate correlations and ordinary least squares multiple regression analyses were performed to evaluate the second research question and Hypothesis 4. Multiple regression was used because it permits the determination of whether there is a significant relationship between an outcome or criterion variable and multiple predictor variables when taken as a group. Hypothesis 4 predicted that, at baseline, regardless o f group, quality of the premorbid relationship with the care-recipient, communal and exchange orientation towards relationships, and dispositional empathy (perspective-taking, empathic concern and personal distress) would predict caregivers’ empathic coping. Specifically, a positive relationship was expected between premorbid relationship with the care-recipient, communal orientation, perspective-taking, empathic concern and empathic coping; an inverse or negative relationship was expected between personal distress, exchange orientation and empathic coping. Additionally, select sociodemographic variables were included: age, sex, ethnicity and kin relationship. The bivariate correlations revealed that perspective taking and quality o f the premorbid relationship with the care-recipient were significantly related to empathic coping and were in the predicted direction: perspective taking (r = .37, p = .01), quality o f premorbid relationship (r = .47, p = .001). The correlations were not significant between empathic coping and the sociodemographic variables or, between empathic coping and empathic concern, communal orientation or exchange orientation. Two multiple regressions were performed. First, empathic coping pre-test scores were regressed on the linear combination of age, sex, ethnicity and caregiver type to evaluate whether these sociodemographic variables accounted for any variance in Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 144 empathic coping. None of these predictors contributed significantly to empathic coping and therefore were not included in the second multiple regression which included the variables in Hypothesis 4: quality o f premorbid relationship with the care-recipient, communal and exchange orientations towards relationships, and dispositional empathy (perspective-taking, empathic concern and personal distress). Results for the two multiple regressions are shown in Table 14. The equation containing the linear combination o f the four sociodemographic variables accounted for 11% of the variance in empathic coping [F = 1.24, p = .31, adjusted R2 = .02]. Beta weights (standardized multiple regression coefficients) and squared semi-partial correlations were reviewed to assess the relative importance of these variables in the prediction of empathic coping. The squared semi-partial correlation for a given predictor is the percent o f variance in empathic coping accounted for by that predictor, beyond the variance accounted for by the other predictor variables. Beta weights and squared semi-partial correlations are presented in Table 14. As indicated in Table 14, none o f the sociodemographic predictors displayed significant beta weights or semi-partial correlations. The equation containing the linear combination of quality o f premorbid relationship, communal orientation, exchange orientation, perspective-taking, empathic concern and personal distress accounted for 39% o f the variance in empathic coping [F = 4.23, p = .002, adjusted R2 = .30]. Perspective taking and quality o f premorbid relationship displayed significant beta weights and semi-partial correlations. Quality of premorbid relationship demonstrated the somewhat larger beta weight at 0.38 (p = .007) Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Table 14 MULTIPLE REGRESSION FOR EMPATHIC COPING AT PRE-TEST Regression Coefficient Squared Semi-Partial Correlation Full Model PREDICTOR b Beta t Partial Correlation F R2 Adjusted R2 F Age 0.09 0.22 0.77 0.01 0.46 Sex -1.66 -0.11 • © o 0.01 0.46 Race 3.02 0.23 1.36 0.04 1.83 Kin relationship 0.76 0.06 0.21 0.00 0.00 All 0.11 0.02 1.24 Empathic Concern -0.32 -0.16 -1.04 0.02 1.29 Perspective Taking 0.62 0.34 2.28 * 0.08 5.16 • Personal Distress -0.35 -0.25 1 00 0.05 3.23 Quality Premobid Relationship 0.79 0.38 2.86 “ 0.13 8.39 * Relationship Orientation: Communal -0.08 a © © ■ o b \ oc 0.01 0.65 Relationship Orientation: Exchange 0.11 0.17 1.19 0.02 1.29 All 0.39 0.30 4.23 * p < 0 5 ;* * p < 0 1 * KJ\ 146 while the beta weight for perspective taking was 0.34 (p = .028). Both coefficients were in the predicted direction. The findings regarding the semi-partial correlations indicate that quality o f premorbid relationship accounted for approximately 13% o f the variance in pre-test empathic coping scores, beyond the variance accounted for by the other five predictors, F = 8.39. Perspective-taking accounted for 8% of the unique variance in empathic coping, F = 5.16. The interaction between quality o f pre-morbid relationship and perspective-taking was non-significant. Results from the regression suggest that, o f the variables included in the model, caregivers’ capacity for empathic responding to the care-recipient depends most strongly on the caregivers’ quality o f premorbid relationship with the care-recipient and on their ability to adopt the psychological perspective o f others. Empathic responding is minimally affected by caregivers’ orientation towards relationships in general, or by their tendency to experience feelings o f warmth, compassion or concern for others or to feel discomfort in reaction to viewing emotions in others. The non-significant interaction suggests that the association between empathic coping and perspective-taking is not different depending on the quality o f premorbid relationship with the care-recipient (e.g. good or poor). Treatment Adherence Mean ratings for the Empathic Coping and Information/Support groups on the facilitator behavior checklist are displayed in Figure 2. This checklist is composed o f three types o f facilitator behaviors: (1) behaviors considered to be characteristic of the Empathic Coping group but not o f the Information/Support group (discussing the relationship between the caregiver and the care-recipient; discussing the care-recipients’ feelings and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Figure 2 Means Ratings for Facilitator Behavior Checklist 3.5 3.0 2.5 2.0 Ratings 1.5 1.0 0.5 0.0 I I m i. w s -» o I i B “• K “ 8 ,D a 5 I s i o £ I Empathic Coping Group I Information / Support Group 0.0 = absent 1.0 = occassionally 2.0 = some of the time 3.0 = most of the time * p < 0.05 " p < 0.01 **p< 0.001 p< 0.0001 Facilitator Behavior * 148 experiences; modeling and practicing skills didactics; modeling/practicing skills in session; assigning out-of-session practice exercises), (2) behaviors considered to be characteristic of the Information/Support group but not o f the Empathic Coping group (discussing the use o f community resources or services; giving advice) and (3) behaviors expected in both groups (being warm, not being judgmental, pointing out/highlighting shared thoughts, feelings, experiences; observing and reinforcing caregiver caregiving efforts; facilitating caregivers’ interaction with one another). Initially, discussion o f management o f care-recipient problem behaviors, provision of information about the disease, and discussion o f the need for caregivers to care for themselves were expected to occur in both groups but to be discussed in very different ways. For example, the Empathic Coping facilitator was expected to provide information about the disease as a way to increase caregiver understanding o f how the disease process impacts the care-recipient and contributes to behavioral reactions (viewed as coping efforts). The Information/Support facilitators were expected to provided information about the disease in a more descriptive manner, itemizing changes and symptoms. However, because the checklist did not track the ways in which the facilitator discussed these issues, inclusion o f these behaviors was not helpful in monitoring whether or not facilitators adhered to the expected approach to these issues. Independent-samples t tests were performed on ratings from the facilitator behavior checklist. T tests tested the null hypothesis that the Empathic Coping facilitator and the Information/Support group facilitators did not differ with respect to mean scores on facilitator behaviors. This analysis revealed a significant difference between facilitators Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 149 on discussion o f the caregiver-care-recipient relationship (dyadic relationship) [t (14) = 3.35, p = .006], discussion o f the care-recipients’ feelings and experiences [t (14) = 4.89, p = .0004], discussion o f management o f care-recipient problem behaviors [t (14) = 3.93, p = .002], teaching/didactics [t (14) = 23.00, p = .0000], modeling skills [t (14) = 5.00, p = .0001], and assignment o f out-of-session practice exercises [t (14) = 5.00, p = .0001]. As illustrated in Figure 1, all o f these differences were accounted for by the facilitator in the Empathic Coping group engaging in significantly more o f these behaviors than the facilitators in the Information/Support group. These findings indicate that the facilitator in the Empathic Coping group adhered to the intended protocol and that this protocol was different from that adopted by the Information/Support group facilitators; that is, that these behaviors were characteristic o f the Empathic Coping group but not o f the Information/Support group. However, as also indicated in Figure 2, though not significantly different, the facilitator in the Empathic Coping group more frequently engaged in a facilitator behavior thought to be characteristic o f the Information/Support group but not o f the Empathic Coping group: encouraging the use o f community resources. This finding may be a function of the similarities between the Information/Support group and the portion of the Empathic Coping group allocated to discussion of caregivers' current concerns. For example, during discussions o f caregivers' current concerns, caregivers were given the names o f agencies to contact so that they could get additional help. Collectively, findings from the facilitator behavior checklist suggest that the Empathic Coping group contains all elements of the Information/Support group whereas Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 50 the Information/Support group does not contain some elements of the Empathic Coping group. Findings also suggest that differential change in the Empathic Coping versus the Information/Support group was not due to differences in “non-specifics” such as warmth or being non-judgmental. One final observation should be made. The degree to which the facilitator believed in the intervention was not measured. This factor could have differentially influenced administration of the treatment. The facilitator o f the Empathic Coping groups, who also was the primary investigator o f the study, strongly believed in the efficacy of the Empathic Coping groups. Belief in the efficacy o f the Information/Support group may have been more variable among the facilitators in the Information/Support groups. However, belief in the Information/Support group treatment also is likely to be strongest among this group o f facilitators given their high level o f training, experience and desire to participate in treatment outcome research. Qualitative Observations of Factors Affecting Implementation and Impact of the Empathic Coping Intervention Two major factors likely influenced the effectiveness of the Empathic Coping intervention and may have contributed to the smaller effects than anticipated. These factors are degree of distress in the caregivers and caregiver attendance. Caregiver distress may have influenced treatment in that, on occasions when several caregivers had extremely pressing concerns, the group facilitator deviated from the planned structure of the groups by extending the amount o f time devoted to discussion of caregiver current concerns (typically by an additional 10-15 minutes). This decision was Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 151 made for two reasons: 1) caregivers could learn the concepts better if they were not so distressed and 2) caregivers were told at the outset that they would have an opportunity to share their current concerns (though in the Vz hr time allotted). In these cases, the facilitator consolidated the material planned for that day and weaved it into the current concerns discussion. For example, caregivers repeatedly had difficulty learning the concept o f non-intentionality o f behavior of the care-recipient because they were so angry and upset by something that the care-recipient had done or prevented them from doing. However, the extension of the amount of time devoted to discussion o f caregiver current concerns often also meant that within-session modeling o f skills was curtailed which likely impacted skill learning. In one o f the Empathic Coping groups, the discussion o f current concerns was extended by a full Vz hour. In this case, a group member had been murdered by her husband. The group needed to spend time processing the group member’s death, particularly because the group member had never given any indication that her husband was violent. In fact, she often mentioned how helpful he was in caring for her father (the care-recipient). Caregiver attendance may have influenced the impact of the group in that sessions built on one another, such that information learned at one group provided a foundation for the subsequent group. For this reason, when a caregiver missed a group, the group facilitator asked the caregiver to come 15-30 minutes early to the next group in order to be able to review the material covered in the missed group, including practice exercises. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 52 However, this strategy was not equivalent to attending the entire group and caregivers could not learn, as effectively, the information. In addition to the aforementioned factors, part o f the limited effect o f the Empathic Coping intervention may have been due to limitations o f quantitative research designs. As found repeatedly in other caregiver intervention studies, in the present study, caregivers exhibited a very positive response to the intervention through unsolicited subjective reports. The unsolicited written testimonials about the perceived benefits o f the intervention are included verbatim. These testimonials include: “I enjoyed the class and feel it provided a benefit to me” , “I enjoyed each session”, “Your ideas o f what to do to help care for my dear husband helped me in many ways”, “I thoroughly enjoyed the past months, learning valuable lessons in your class and sharing the other caregivers’ experiences. I will use what I have learned not only in the caregiving scenario, but using everything we discussed and applying them to an appropriate situation”, “I really feel I can cope with what is ahead with God’s help and using my abilities and what I have learned from you”, “Thanks for all your insight—it definitely helped me”, “You successfully educated me and instilled courage to take the proper steps. You lessened my anxiety and for that alone, I am forever grateful”, “I really appreciate the opportunity to have been involved in your groups”. No written qualitative comments were submitted from the Information/Support group. DISCUSSION This study provides a preliminary estimate o f the benefits of an intervention approach aimed at increasing dementia caregivers’ empathic responding for the persons Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 153 for whom they are caring (Empathic Coping group) and how these benefits compare to those derived from standard Information/Support groups. Results are discussed first in terms o f whether or not the Empathic Coping intervention achieved its goal o f increasing caregivers’ empathic responding towards the care-recipient and reducing strain in the caregiver-care-recipient relationship. Next, findings regarding differential benefits between the Empathic Coping and Information/Support group interventions are discussed. Then, additional areas o f change not predicted by the study hypotheses are reviewed. Finally, limitations and strengths o f the study are examined as well as directions for further research. Empathic Coping Intervention: Achieving Desired Effects? Within-group analyses indicate that the Empathic Coping intervention did not result in an increase in caregivers’ empathic coping with the individuals for whom they were caring. However, the analyses indicate that adult child, but not spouse, caregivers in the Empathic Coping group showed change in the predicted direction on other select outcome variables. They increased their use of acceptance coping with their relationship with the care-recipient and showed a borderline significant decrease in strain in their relationship with the care-recipient. Because acceptance coping was strongly correlated with empathic coping, the increase in acceptance coping suggests that the intervention may have achieved desired effects among adult children caregivers in terms o f promoting greater understanding and acceptance of the care-recipient. This greater acceptance may have enabled adult children to improve their interactions with their parent care-recipient as suggested by the reduction in dyadic relationship strain. However, adult child caregivers Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 154 also increased their use o f instrumental coping and intrapsychic coping with the relationship with the care-recipient and experienced lower levels o f general psychological distress. An interrelationship among these different coping responses with stress in the relationship with the care-recipient and outcome variables exists, such that the data do not permit conclusions about any particular coping strategy being responsible for any given outcome. However, in light o f increases in instrumental coping among adult child caregivers in the Information/Support group without concomitant changes in acceptance coping or relationship strain, one might infer that the increase in acceptance coping among adult child caregivers in the Empathic Coping group is responsible, at least in part, for the decrease in stain in the relationship with the care-recipient. This association is consistent with findings from the martial therapy literature (Jacobson & Christensen, 1996). It also is important to note that selective attrition on instrumental coping with stress in the relationship with the care-recipient among the Empathic Coping group may have resulted in a group o f caregivers more likely to use this approach. The finding regarding increased intrapsychic coping with the relationship with the care-recipient among adult child caregivers in the Empathic Coping group is discussed. This finding may indicate that focusing on the relationship with the care-recipient (the objective o f the Empathic Coping group) makes adult child caregivers more aware o f their changed relationship with their parents. This awareness may create an increased desire to escape from these changes (i.e., fantasize that the situation was different), a coping response that in other caregiving studies has been associated with poor mental health (Pruchno & Resch, 1989; Quayhagen & Quayhagen, 1988). The fact that in the current Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 155 study, intrapsychic coping was not associated with poorer mental health (and may in fact occur in the face o f decreased psychological distress) may indicate that escape/avoidance (or intrapsychic) coping strategies can be effective in the short term because they allow caregivers to remove themselves from the situation temporarily (Gottlieb & Gignac, 1996). Whether or not the use o f intrapsychic coping is associated with poor outcomes may be dependent on how often, when and with what other coping responses intrapsychic coping is used as well as the nature of the stressor with which it is used. Furthermore, it may be adaptive to experiment with a range o f coping responses when confronted with chronic, evolving stressors. This assertion is supported, indirectly, by findings from cross-sectional research that caregivers use a variety of coping efforts in response to a stressor and, that as the perceived stressfulness o f the stressor increases, so do overall coping efforts, both effective and ineffective (e.g. approach and avoidance coping Haley et al., 1996). Presumably, increasing the range o f coping responses allows caregivers to test out different strategies and evaluate how they work or do not work, incorporating information specific to the given circumstance. Interventions can assist caregivers in learning how to experiment with, and selectively choose, appropriate coping responses; the particular focus o f the intervention may determine how broadly or narrowly stressors are addressed. In contrast to adult children, within-group analyses indicate that spouses in the Empathic Coping intervention showed no change in empathic coping or acceptance coping with the relationship with the care-recipient. This lack o f change suggests that the intervention did not alter the spouse caregiver-care-recipient interactions or strain in the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 156 relationship with the care-recipient. Furthermore, there is some indication that the Empathic Coping intervention raised spouses’ perception o f loss o f shared goals and activities, though a similar increase was evidenced among spouses in the Information/Support group. (Thus, both interventions appear to have made spouses more aware o f losses in their relationship with the care-recipient, but curiously, this perception was limited to shared goals and activities and did not extend to intimacy). This perception may have occurred for spouses but not for adult children because spouses may be more reliant on the care-recipient as their primary companion for social activities. The different pattern o f findings for spouse and adult child caregivers raises questions about the role o f kin relationship in caregiving interventions in general as well as in terms o f barriers and benefits o f the Empathic Coping intervention. The outcome for spouses in this study may reflect a similar process to that observed in Coyne and Smith’s (1991, 1994) work on protective buffering—the hiding o f concerns, denying of worries, and yielding to the partner to avoid disagreement and to avoid upsetting the partner—in caregiving wives of men recovering from a myocardial infarction. Protective buffering was positively associated with caregiving wives’ distress but also was positively associated with care-recipients’ self-efficacy regarding recovery. The authors conclude that shielding the care-recipient from worries or yielding to the care-recipient to avoid disagreement may be helpful to the care-recipient but not to the caregiver. An analogous process may occur with empathic coping in spouses o f dementia care-recipients in that what is good for one partner may not be best for the other. Promoting understanding o f the demented spouse may make the caregiving spouse more aware o f the losses and limits to their relationship. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 157 The need for the caregiving spouse may be to accept the changes, find ways to stay connected as well as cultivating outside supports. Information/Support Intervention: Achieving Desired Effects? Within-group analyses indicate that the Information/Support group intervention did not result in much change in areas not specific to the caregiver relationship with the care-recipient. Among spouses in the Information/Support group intervention, change was restricted to less frequent use of intrapsychic coping with participation in social activities. Among adult children in the Information/Support group, as predicted, caregivers increased their use of instrumental coping with management o f household tasks. Empathic Coping vs. Information/Support Group Interventions: Differential Effects? In terms o f whether or not the Empathic Coping intervention was better than a standard Information/Support group intervention in increasing caregivers’ empathy and effectiveness in coping with stress in the relationship with the care-recipient and conversely, whether or not a standard Information/Support group intervention was more effective than the Empathic Coping intervention in increasing coping effectiveness with stresses not specific to the relationship with the care-recipient, multivariate and univariate between group analyses show few differential benefits over time. Spouses showed no differential change and adult children demonstrated differential change on only one variable. As predicted, adult children in the Information/Support group increased their use of this strategy and adult children in the Empathic Coping group decreased their use of this strategy. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 158 The finding o f minimal differential change among the two intervention approaches has been found in other caregiver studies, though few other studies have examined spouse and adult child caregivers separately and therefore can not address whether outcomes would have been different for adult children versus spouses. Lovett and Gallagher (1988) found that two psychoeducational, skills-building classes designed to reduce distress among caregivers (of physically impaired care-recipients) were equally effective in reducing depression and increasing positive affect. Both groups resulted in greater improvement than the control group. Montgomery and Borgatta (1989) found no differences in the impact of respite and educational services among caregivers o f physically and/or cognitively impaired care-recipients. Interestingly, however, they did observe differential outcomes among adult child and spouse caregivers in terms of placement of the care-recipient. Services seemed to delay care-recipient nursing home placement among adult child caregivers and encourage nursing home placement among spouse caregivers. In the current study, kin relationship effects were observed in multivariate and univariate between-group analyses. Although the analyses indicated little differential change between the two intervention approaches for either spouse or adult child caregivers, the analyses revealed that both interventions resulted in improvements on select outcome variables, primarily among adult child, but not, spouse caregivers. Spouses in both groups showed minimal improvement over time, increasing only in coping effectiveness with management o f household tasks. (Within-group analyses, which Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 159 are discussed later in the paper, show that this change was accounted for primarily by spouses in the Empathic Coping group). Adult children in both groups significantly increased their perceived caregiving competence and their use o f instrumental coping with their relationship with the care- recipient. This finding suggests that both interventions raised adult child caregivers’ sense of perceived competence, though the causal association with instrumental coping is unknown; that is, increased competence could result in increased frequency o f instrumental coping, increased frequency o f instrumental coping could engender greater perceived competence, or both may increase as a result o f a third, correlated factor. O f note is that coping improved in both groups, not just among caregivers in the Empathic Coping group for which the relationship was the specific target. The issue of change in areas not targeted specifically by the respective intervention will be discussed further. However, first, implications o f increased competence with caregiving and the role of kin relationship are explored. Caregiver Competence. Increased competence with caregiving may increase caregivers’ sense that they have the requisite skills needed to respond effectively to ongoing or even future stressors; in essence, perceived competence may serve as a protective buffer against negative outcomes. It also may enable caregivers to be more flexible in their approach to caregiving, a response that is associated with positive outcomes (Schwartz & Rogers, 1994). The putative protective function o f caregiving competence is consistent with findings from a longitudinal study of internal resourcefulness, coping and mental health in Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 160 caregivers. Internal resourcefulness, defined as the perceived ability to overcome difficulties through self control efforts, was the only significant predictor o f decreased negative affect over time (Fingerman, Gallagher-Thompson, Lovett, & Rose, 1996). Unfortunately, caregivers in the present study were not evaluated after their post-test assessment so the longer term effect o f increased caregiver competence is not known. Cross sectional data also support the beneficial effects o f perceived competence as well as the detrimental effects o f low perceived competence. Perceived competence is associated with effectiveness o f coping responses, though the causal direction is unclear (e.g., perceived lack o f competence could lead to ineffective coping and/or ineffective coping could engender a sense o f lack o f competence). Rose et al. (1997) found that caregivers with a high tendency to feel dissatisfied with themselves and in their ability to achieve desired outcomes were more likely to use wishfiilness coping; caregivers with a low tendency to feel dissatisfied with themselves showed more acceptance and instrumental coping. Low perceived competence and the perception of being unable to cope with the care-recipients’ behaviors or with one’s own emotional reactions to the behaviors, is associated with increased depression and strain (Morris, Morris, & Britton, 1989; Zanetti, Frisoni, Bianchetti, Tamaza, Cigoli & Trabucchi, 1998). The direction o f change in the current study, though not statistically significant, support the outcomes o f the Fingerman et al. (1996) and the Rose et al. (1997) study. In the current study, adult children in both groups showed an increase in perceived competence with caregiving and an increase in instrumental coping; however, only adult children in the Empathic Coping intervention showed a corresponding decrease in general Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 161 psychological distress. This pattern of results suggest that caregivers’ risk for negative outcomes may be altered through intervention, but that the effectiveness of particular caregiving interventions for reducing risk may vary, depending on the stressors targeted and the skills taught. Kin Relationship. The finding that adult child but not spouse caregivers demonstrated an increase in instrumental coping with the relationship with the care- recipient and perceived competence with caregiving may be a function of differences in the nature o f the marital relationship versus the parent-child relationship. Caregiving for a spouse may represent an extension of the marital role whereas caregiving for a parent may represent a reversal o f roles (or the addition o f new roles). Role changes can alter the nature o f a relationship and must be negotiated. Support for the notion that caregiving for a spouse may represent an extension of the marital role whereas for adult children it represents a new role comes from the finding that spouses identify themselves as caregivers later on in caregiving than do adult children (Montgomery & Kosloski, 1994). As a result, spouses tend to be caring for a more impaired care-recipient and to be performing different caregiving tasks than adult children (Montgomery & Kosloski, 1994) which also can impact caregiving (though in the current study this finding held up only partially). Furthermore, when adult children and spouses do perform the same types of caregiving tasks, they experience different adverse effects. For example, Barber and Pasley (1995) found that although wives and daughters o f demented care-recipients provide similar types o f care, daughters experienced greater Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 162 strain in their relationship with the care-recipient and with other family members whereas wives experienced restrictions in social activities. Collectively, these findings provide strong support for the need to consider kin relationship when developing and implementing interventions for caregivers. Methods for coping with stressors and the impact o f the stressor may vary with kin relationship to the care-recipient. fieneralization o f Coping Change in areas predicted by the study hypotheses have been explored. As mentioned earlier, caregivers also evidenced changes in coping with stressors not specific to the targets o f the intervention. For caregivers in the Information/Support intervention, these stressors are those in the relationship with the care-recipient. For caregivers in the Empathic Coping intervention, these stressors are those not specific to the relationship with the care-recipient. Information/Support. Spouse caregivers in the Information/Support group showed no change on variables specific to the relationship with the care-recipient. Adult children demonstrated an increased use o f instrumental coping with the relationship with the care-recipient. However, adult children also evidenced a decrease in satisfaction with caregiving which may indicate that adult child caregivers in the Information/Support group intervention are trying new problem-solving strategies to handle changes in their relationship with the care-recipient but that these strategies are not very effective. This assertion would be informed by knowing specifically what these caregivers are doing in terms o f instrumental behavior. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 163 Empathic Coping. Spouse caregivers in the Empathic Coping group showed an increased use o f instrumental coping with management o f household tasks and decreased use o f wishfulness coping with management o f household tasks. Adult children in the Empathic Coping intervention showed an increased use o f instrumental coping with participation in social activities and decreased use o f wishfulness with management of household tasks. Although unexpected, increased coping effectiveness with stressors not specific to the relationship with the care-recipient may not be inconsistent with changes in coping with stress from the relationship, particularly if the stressors involved the care-recipient directly. For example, stress from management o f household tasks could stem from unrealistic expectations about the care-recipient’s ability to perform tasks and then frustration when expectations are not met. If caregivers increase their understanding of the care-recipient’s needs and behavior, then caregiver can facilitate coping in both themselves and the care-recipients by altering how they approach the task. In terms of management o f household tasks, this altered approach may mean that caregivers stop asking the care-recipients to wash the laundry because they recognize the complicated nature o f the task and how asking them to continue doing it is likely to confuse and upset the care-recipients. In addition, because the caregiver has learned the importance o f keeping the care-recipient involved and feeling self-efficacious, caregivers may ask the care-recipient to do the task and in a way that optimizes success (e.g., folding clothes only rather then doing laundry). This task may give the care-recipient something constructive to do and increase satisfaction and a sense of competence. Thus, caregivers’ change in Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 164 relating to the care-recipients regarding household tasks may result in new strategies for managing this situation. One way to elucidate this potential process would be to examine the specific behaviors that caregivers are doing when they engage in instrumental coping, e.g. what did they do when the “did something totally new to solve the situation”? Thus, an increase in coping across domains and not just those purportedly targeted by the respective intervention approach may reflect an interdependence among the stressors and/or generalization o f coping beyond the targeted stressors. Findings from the current study are limited in their ability to address these issues given the moderate correlations across domains for the same strategy. The increase in coping also may be the result o f an overlap in the intervention approaches. However, as indicated by the treatment adherence data, the overlap, at least in terms o f the behaviors measured, was minimal. Comparisons among Adult Children: Consideration of Baseline Differences When examining findings, it is important to consider baseline differences among adult child caregivers in the two groups. Adult children differed on instrumental coping, care-recipient level o f impairment and, ethnicity. In terms o f instrumental coping, adult children in the Empathic Coping group tended more frequently to use instrumental coping with all stressors suggesting that they may be more effective problem solvers than caregivers in the Information/Support group. However, if this group were more effective problem-solvers overall, one would expect other indicators o f distress and strain to be lower at baseline but they were not. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 165 In terms o f level o f care-recipient impairment, adult child caregivers in the Information/Support group were caring for a parent with greater impairment than caregivers in the Empathic Coping group. Level of care-recipient impairment could contribute to differences in the caregiving experience given that it was positively associated with relationship changes (perceived loss o f intimacy and loss o f shared goals and activities with the care-recipient). Level o f care-recipient cognitive impairment may influence how the care-recipient reacts to the disease and interacts with the caregiver. Care-recipients with low levels o f cognitive impairment may be best able to reinforce caregivers’ efforts because they have minimal problems with verbal and non-verbal comprehension and expression. However, care-recipients who are less impaired also are early on in the disease process when they are more apt to deny problems. Denial (and anger) can create strain in the relationship and further misunderstanding. Early on in the disease process also is when the care-recipient’s behavior is the most erratic (fluctuating from seemingly unaffected to impaired) which allows more room for caregivers to make attributions about the intentionality o f the care-recipient’s behavior. The ways in which level o f impairment may influence relationship changes should be examined further. In terms o f ethnicity, over 80% o f the adult child caregivers in the Information/Support intervention were African-American in comparison to only 33% of the adult child caregivers in the Empathic Coping intervention. Racial differences may have implications for understanding differential responses among adult children in the two intervention groups. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 166 There is some suggestion that African-American caregivers may appraise and frame caregiving differently than Caucasian caregivers. This difference may influence how they cope with caregiving and the associated changes in their relationship with the care- recipient. O f note is that ethnicity often is confounded w ith kin relationship in that African-American caregivers are more likely to be adult children whereas Caucasian caregivers are more likely to be spouses. In the current study, baseline group differences on instrumental coping in all stress domains were observed among adult children, with caregivers in the Information/Support group who were primarily African-American showing low er frequency o f use than caregivers in the Empathic Coping group, who were primarily Caucasian. This finding is consistent with that o f Hinrichsen and Ramirez (1992) who found that African-American caregivers dem onstrated less involvement in the active management o f the care-recipient which they suggest reflects a more relaxed style o f responding to the care-recipient. They also found that African-American caregivers experienced less burden than Caucasian caregivers despite comparable levels o f impairment in the care-recipients. Adult children and spouses were not examined separately. This finding is consistent with a study o f spousal dementia caregivers (Miller, Campbell, Farran, Kaufman & Davis, 1995) which found that African-American caregivers reported lower levels o f upset with the care- recipient’s behavior problems than Caucasians caregivers. Thus, African-American caregivers may be less distressed by changes in their relationship with the care-recipient and less likely to respond in ways that increase relationship stress. Appraisals o f the care- Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 167 recipients’ behavior are likely to explain some o f why African-Americans may be less upset by the care-recipients’ behaviors. Haley et al., (1996) found that African-American caregivers showed lower appraisal o f the subjective stressfulness o f caregiving stresses than Caucasian caregivers; lower appraisals were associated with low er depression. The authors speculate that racial differences in appraisals and coping may be due to cultural differences in values and beliefs or to differences in life experience. They add that caregiving may be more o f an expected experience for African-Americans and therefore African-Americans may be more apt to appraise caregiving as usual and expected and be more tolerant o f disturbances in the care- recipient. In fact, other research suggests that African-American caregivers more often normalize symptoms o f dementia as part o f the aging process and more readily incorporate the impaired person into their daily lives and family systems (Dilworth-Anderson & Anderson, 1994). Normalizing symptoms may indicate that African-American caregivers do not view the care-recipients’ behavior as intentional which is one o f the primary attributions that contribute to distress in caregivers. Thus, more realistic appraisals may prom ote positive aspects o f caregiving and/or increase resilience to negative effects o f caregiving. I f so, this assertion argues for specifically targeting appraisals o f care-recipient behaviors in interventions designed to prom ote positive aspects o f caregiving. Findings from Lawton, Rajagopal, Brody, and Kleban (1992) support Haley et al.’s (1996) speculation that differences in cultural norms and expectations o f caregiving contribute to racial differences in caregiving. Lawton and his colleagues (1992) found that, after controlling for age, gender and socioeconomic status, African-American Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 168 caregivers, in comparison to Caucasian caregivers, experienced a greater sense o f caregiving mastery, greater satisfaction, less subjective burden, less sense o f intrusion on their lives and more strongly held affirmative traditional caregiving ideology. This ideology refers to caregiving in response to repaying a debt for being cared for as child, continuing a family tradition o f mutual concern, fulfilling personal values and, setting an example for one’s children. Adult children and spouses were not examined separately. For both African-American and Caucasian caregivers, caregiving satisfaction was associated with positive affect and burden was associated with depression. Collectively, the aforementioned studies suggest that ethnic differences in positive mental health outcomes among caregivers may reflect differences in appraisals o f caregiving. Caregivers able to view caregiving as important, meaningful and rewarding experienced less psychological distress and burden and increased life satisfaction than those who viewed it as a threat to their way o f life (Clark & Hartman, 1996; Knight, 1991; Pratt, Schmall, Wright, & Cleland; 1985). An intervention designed to prom ote positive aspects o f caregiving and coping with changes in the caregiver-care-recipient relationship would benefit from greater attention to the role o f appraisals. Furthermore, the target o f promoting ways to appraise the caregiving experience in order to give it meaning and to find satisfaction (such as through caregiving ideology) may be just as im portant a target for intervention as reducing negative impacts o f caregiving. As Lawton et al., (1992), state “It is clearly worthwhile, in working with caregivers, to search for ways o f enhancing enjoyment o f the impaired elder, or for appraisals that will elevate the caregiver’s sense o f Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 169 accomplishing something positive, even in the absence o f any ability to reduce stress and burden” (pg. 163). Predictors o f Empathic Coping at Baseline The results from regression analyses in the present study indicate that the caregivers’ quality o f premorbid past relationship with the care-recipient and one component o f dispositional em pathy-perspective taking, or the general ability to adopt the psychological point o f view o f others— predicted caregivers’ baseline empathic coping. The two other components o f dispositional empathy included in the regression analyses— empathic concern and personal distress at seeing others in need— w ere not predictive o f empathic coping. Neither was either a communal or exchange orientation towards relationships, the final two variables included in the regression model. O f the significant predictors included in the regression model, quality o f the premorbid past relationship with the care-recipient accounted for the most variance in empathic coping (13%). Caregivers with a poor premorbid past relationship less often used empathic coping with the care-recipients than those caregivers with a good premorbid past relationship. This difficulty may be due to a number o f factors, including more negative appraisals and negative beliefs about the care-recipient and established ways o f relating that are unlikely to include empathic responding. These factors may impinge on the ability to perceive accurately the care-recipients’ current needs o r adopt the care- recipients’ perspective. For example, Jivanjee (1994) found that caregivers’ with a poor quality o f premorbid relationship with the care-recipient were more likely to believe that the care-recipient’s behavior was deliberate and this perception strongly influenced how Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 70 they responded to the care-recipient. Although the Empathic Coping intervention can not fix the quality o f the caregiver-care-recipient premorbid past relationship, it may be able to minimize the impact on the current relationship by targeting caregivers’ appraisals o f care- recipient’s behavior (e.g. appraisals o f intentionality). It also may help by assisting caregivers’ in identifying their own caregiving ideology o r the positive aspects o f caregiving that enable them to weather difficult interactions with the care-recipient. Further exploration o f the ways in which poor past premorbid relationship with the care- recipient influences the current caregiver-care-recipient relationship is merited. Perspective-taking was the second significant predictor o f empathic coping at baseline, accounting for 8% o f the variance. Caregivers who evidenced a higher tendency to adopt the psychological point o f view o f others more frequently used empathic coping than caregivers who had a lower tendency to adopt the psychological point o f view o f others. Perspective taking likely enables caregivers to see the care-recipient’s behavior as more understandable and predictable (situational determinants), and therefore to respond appropriately. Behavior that is seen as predictable is associated with lower depression (Coppel, Burton, Becker & Fiore, 1985). In the process, perspective taking enables the caregiver to reframe the problem (e.g. care-recipient not being lazy but rather does not understand the task to be able to complete it), a response that has been associated with lower caregiver burden (Pratt et al, 1985). The fact that perspective taking was the only component o f dispositional empathy to predict caregivers’ empathic coping with the care-recipient may support the viewpoint that cognitive processes (perspective taking) are more important to empathic responding Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 171 than affective processes (empathic concern); that is, if affect is experienced, it is considered an epiphenomenon o f cognition in that it is evoked by an understanding o f the other’s feelings (Strayer, 1987). The finding that relationship orientation was not predictive o f empathic coping is somewhat surprising. Relationship orientation was thought to influence how caregivers react to and adapt to changes in the care-recipient’s way o f relating to the caregiver. One explanation o f lack o f a predictive relationship is that the m easure o f relationship orientation yields information only about how one’s expectations, values and beliefs about how people in general should act in relation to one another. However, caregiver’s beliefs about relationships in general may be different from their beliefs about intimate relationships o r from their beliefs about specific relationships (e.g. care-recipient). M easures o f relationship orientation specific to the relationship with the care-recipient may have provided a better assessment o f this association. (Past research finding a positive association between relationship orientation and mental health outcomes have used both approaches). Additionally, the way in which beliefs correlate with actual behavior was not assessed. Future investigations would be informed by assessing caregiver-care-recipient interactions. Collectively, the regression analyses intimate that the effectiveness o f the Empathic Coping intervention depends on the caregivers’ quality o f premorbid past relationship with the care-recipient and perspective taking, or the general ability to adopt the psychological point o f view o f others. However, these findings should be considered tentative and in Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 17 2 need o f replication given the small sample size and relatively large number o f predictors which can make regression estimates unstable. Limitations o f the Present Study Interpretation o f findings from the present study must be considered in light o f methodological, measurement and design limitations. Limitations include a small sample size, non-comparability o f the intervention groups in terms o f participant characteristics and structural aspects o f the intervention, duration o f treatment, lack o f follow-up and measurement o f outcome. These factors are reviewed in turn. The small sample size resulted in a low power to detect medium effects; in fact, the pow er was as low as 25% with some o f the non-significant, but clinically meaningful changes (e.g. strain in relationship with the care-recipient in the Empathic Coping group). Replicating the study with a larger sample size is recommended, one that takes into account a 15-30% dropout rate. Power also can be increased by reducing the heterogeneity within the groups, such as groups containing adult child or spouse caregivers only. Non-comparability o f the tw o intervention groups, both in term s o f participant characteristics and structural aspects o f the intervention, is a second factor that may have influenced study outcomes. In terms o f participant characteristics, the groups initially differed on kin relationship to the care-recipient (spouse or adult child), care-recipient sex, care-recipient marital status, and care-recipient level o f impairment. M ost o f these differences were controlled by conducting stratified analyses by kin relationship. However, among adult child caregivers, the groups remained different on caregiver Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 173 ethnicity and care-recipient level o f impairment. Therefore, within-group analyses were stressed. Random assignment likely would have minimized these selection differences. An issue related to the aforementioned selection effects is the representativeness o f the Information/Support groups. The Information/Support groups that served as comparison groups in the present study may represent a select sample o f Information/Support groups in that the facilitators agreed to consult with their groups about participating in the research. O f the available sample o f potential comparison groups, not all o f the group facilitators approached agreed to talk to their group members. This difference may indicate that facilitators who participated in the study are more likely than those who did not to bring information and opportunities to their group members and to engage them with the material. This process could make the groups more similar to the Empathic Coping intervention than other existing Information/Support groups not studied, thereby making it even more difficult to evaluate the question o f differential effects. In terms o f the structural aspects o f the intervention, the Empathic Coping and Information/Support groups were non-comparable with respect to the context o f participation, level o f participation/attendance, composition o f the groups and number o f group facilitators. These differences were addressed only to the extent o f examining change within the groups. Context o f participation was different in that the Empathic Coping group was time-limited and closed to new members whereas the Information/Support group was ongoing and open to new members. This difference may have contributed to a qualitatively different group experience. For example, in a new, closed group, it may take Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 174 a while for the group to develop group norms and run smoothly; for an ongoing group in which norms are already established, norms may need to be re-negotiated each time a new member joins the group. Each scenario presents unique challenges, though they may have comparable effects in that, under both conditions, it may take a while for members to feel comfortable and to be able to take full advantage o f the group. Level o f participation/attendance differed between the Empathic Coping and Inform ation/Support groups, with caregivers in the Inform ation/Support group attending fewer groups than caregivers in the Empathic Coping group. Attendance may have influenced study outcomes through a dose-response relationship, with caregivers who attended more frequently deriving greater benefits than those who attended less frequently. Post-hoc analyses o f a sample o f low and high attendees does not support this assertion, however. One reason for this outcome may be that when caregivers are doing well, they do not attend groups regularly but rather on an as needed basis. In term s o f the composition o f the groups, the groups differed in that all o f the Empathic Coping groups contained a mixture o f adult child and spouse caregivers whereas some o f the Information/Support groups were composed o f spouse caregivers only. Given the seemingly unique caregiving issues characterizing adult child and spouse caregivers, one might expect the group that is the most homogenous (i.e., spouses in the Inform ation/Support groups) to have an advantage because they can focus on issues o f concern to them specifically. This putative advantage may have raised the bar when trying to evaluate differential benefits o f the tw o intervention groups. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 175 D uration o f treatment is another factor that may have affected study outcomes. The scope o f the intervention may have been to o broad for the number o f sessions involved. In addition, with respect to the Empathic Coping intervention, the foil effect o f the intervention may not have been apparent fo r some time after the end o f the last session given that group members were learning new skills up until the last session. The delayed impact o f skills based caregiving interventions has been observed in other studies (e.g. Mittelman, et al., 1995). Follow-up measurements at six months and/or a year would address the issue o f delayed impact. Finally, measurement issues also may have influenced the study findings. One measurement issue concerns the fact that data were not collected on the caregiver-care- recipient interaction. This omission may have underestimated the benefits o f the Empathic Coping intervention given that the group was designed to benefit both members o f the dyad. Further research would benefit from observing and intervening in the actual caregiver-care-recipient interaction. Interactions with the care-recipients (in-home sessions) would help ensure that caregivers’ behavior generalizes; in that way, training could be tailored to specific relationship issues with which caregivers are having the most difficulty. M easurements of caregivers’ appraisals about the care-recipients’ behavior as well as the caregivers’ ability to respond effectively to the behavior during interactions would be informative. For example, there is some evidence that caregivers’ beliefs about their ability to cope are more predictive o f change in outcom e than actual coping behavior (Fingerman et al., 1996). Appraisals could be measured both through hypothetical Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 176 vignettes in which caregivers would be given a situation and asked how they would respond as well as during real interactions with the care-recipient. A second measurement issue concerns the measurement o f caregiving stressors. The choice o f stressors may not have been conceptually distinct or specific enough to provide a strong evaluation o f domain specificity in coping. For example, caregivers’ participation in social activities may have overlapped with their relationship with the care- recipient if social activities tended to be engaged in with the care-recipient. Furthermore, a caregiver’s relationship with care-recipient represents a broad range o f issues some o f which are more interpersonal than others. In addition, the level o f stress experienced by the respective stressor is not known and may influence outcomes. Future Directions Despite the aforementioned limitations, this study has several strengths. The study was among the first to address, systematically, the interpersonal stress inherent in the changing relations between the caregiver and demented care-recipient. It did so by teaching caregivers interpersonal coping strategies, particularly empathic responding. By comparing the group to standard Information/Support groups that do not address relationship changes directly but that do address stressors not specific to the caregiver- care-recipient relationship, this study also evaluated domain specificity in coping within the context o f intervention. It examined the notion that coping effectiveness is determined by how well a particular strategy fits the demands o f a specific type o f stressor. This is, that interventions have differential effectiveness for particular caregiving stressors depending on the degree to which they create domain specificity between Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 177 stressor and coping response. Furthermore, the study extended the issue o f domain specificity by examining whether coping effectiveness with particular stressors can be improved over tim e and if so, whether change would be associated with different types o f outcomes; that is that there may be different predictors o f positive and negative mental health outcomes and that increasing positive outcomes (e.g. satisfaction, competence, positive affect) may be just as important a focus as decreasing negative mental health outcomes (e.g. psychological distress, negative affect), such that the success o f an intervention may be more broadly construed. Thus, the study addressed the growing assertion that interventions need to assist caregivers in focusing on the positive aspects o f caregiving. There also are several areas in which the intervention can be improved, based on information gleaned in this study. The intervention can be strengthened by an expanded focus on perspective taking and a more detailed exploration o f caregivers’ specific appraisals o f the care-recipients’ behavior. This focus should be balanced with appropriate ways to disengage and distance. M ore within-session role plays and a manual for caregivers (rather than just handouts) should be used to facilitate within-session and out-of- session practice more effectively. The length o f the intervention should be extended, particularly given that skill development takes time and the caregivers did not receive the entire package o f skills until the end o f the intervention. In addition, it may take longer to leam empathic responding skills when the care-recipient can not give direct feedback about the caregivers’ accuracy o f response. Caregiver-care-recipient interactions Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 178 should be assessed. 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APPENDIX A FACILITATOR BEHAVIOR CHECKLIST Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Facilitator FACILITATOR BEHAVIOR FACILITATOR BEHAVIOR CHECKLIST Date of Session FREQUENCY OF BEHAVIOR AND OBSERVER’ S NOTES GLOBAL RATING GROUP PROCESS a. Being warm (e.g. tone of voice, non-verbal behavior conveys warmth and interest; content of what facilitator says conveys concern and caring;) b. Being judgmental (e.g. tone of voice, non-verbal behavior conveys criticism, evaluation) c. Point out/highlight shared thoughts, feelings, experiences (e.g. comment on similar situations, feelings voiced by members) d. Observe and reinforce caregiver’s efforts (including for self) (e.g. reinforce progress, use of strategies, attempt to alter behavior) e. Facilitate members’ interacting with one another (e.g. ask one member to share with another member or the entire group, reinforce a member’s showing empathy for another member) GROUP CONTENT a. Encourage use o f community resources or services (e.g. mention specific agencies, services; distribute phone numbers) b. Discuss relationship o f caregiver and care recipient (e.g. examine interaction between caregiver and care-recipient and impact on each person’s well-being; stress importance of maintaining positive interaction and consequences of negative interaction) c. Discuss need o f caregiver to take care o f him/herself (e.g. time for self; respite care; attend to health needs, reduce stress) 0= *absent, l=occassionally, 2ssom e of tim e, 3s m ost of tim e 0 1 2 3 0 1 0 0 1 196 Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. ADHERENCE RATING CHECKLIST (cont) Facilitator Date of Session________________________ FACILITATOR BEHAVIOR FREQUENCY OF BEHAVIOR GLOBAL RATING AND OBSERVER’ S NOTES GROUP CONTENT 0»absent, lsoccassionally, 2~som e of tim e, 3* m ost of tim e d. Discuss what care recipient feels and experiences 0 1 2 3 (e.g. adopt perspective of care recipient; discuss symptoms and behaviors of care recipient in terms of underlying emotion and needs) e. Discuss management o f problem behaviors o f care recipient 0 1 2 3 (e.g. problem-solve handling behaviors that are distressing to caregiver) f. Provide information gbout dementia 0 1 2 3 (e.g. explain disease process, underlying pathology, listing of symptoms) g. Give advice 0 1 2 3 (e.g. make suggestions about what caregiver should do) h. Engage in didactics/lecturing/teaching o f concepts 0 1 2 3 (e.g. explain concepts, clarify via discussion/questions, formal instruct.) PRACTICE a. Model/practice skills in session absent present (e.g. demonstrate concepts using exercises) b. Assign/review out o f session practice absent present V O >1 198 APPENDIX B EMPATHIC COPING INTERVENTION Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 199 Enhancing your understanding of your impaired friend or family member: Implications for communication, coping and caring An 8-session support and skills development group Julia Elizabeth Kasl-Godley Department o f Psychology University o f Southern California Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 200 Session 1: Overview o f group I. Introductions A. Members meet and share current caregiving situation n. Overview o f group A. What can you expect at each group? (format/structure) 1. V z hour sharing o f current caregiving situations 2. 1 hour specific empathic skill development/didactics (a) description o f skill/provision of information, modeling, practice exercises, discussion o f practice exercises 3. out-of-session practice B. Focus o f skill development: What is empathy/empathic coping? 1. perceiving accurately the feelings of another person and communicating accurately and sensitively your understanding to that person 2. involves: (a) taking the role o f the other person by viewing the world as he/she sees it; seeing the world through his/her lenses; walking in his/her shoes (b) trying to understand and interpret the feelings behind the person’s behavior (c) communicating your understanding in a non-judgmental or helping way 3. essentially means finding ways to keep the persons for whom you are caring included in things you are doing, relating to you C. So why do this? What are the benefits of empathy? (rationale) 1. often caregivers have difficulty understanding the persons for whom they are caring. This difficulty in understanding the persons for whom you are caring can have negative consequences for both you and the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 201 (a) you may try to get the persons for whom you are caring to do things that they are unable to do just because you think they can—causes you and them to be frustrated 1. you may then give up and withdraw from them, leaving little opportunity for positive interactions; this reaction may leave you feeling guilty 2. lack of positive interaction and emotional relatedness can lead to few rewards for giving care (b) you may keep trying harder, become overinvolved, neglect selves, become burned out 1. your distress then makes it even harder to try to be understanding or empathic; this lack o f understanding can increase your frustration and their frustration and perpetuate negative interactions 2. thus, a better understanding o f the persons for whom you are caring can help you relate better to the person and lesson your distress 3. thus, empathy or empathic coping provides a way to increase your understanding of the persons for whom you are caring. A better understanding can lead to: (a) more effective ways o f responding and reacting to the persons for whom you are caring which results in: 1) less problem behaviors in the persons for whom you are caring 2) an increased sense o f competence as a caregiver (b) greater emotional connection D. What will you learn at each session? (distribute H andout 1) 1. Session 1: Overview of group 2. Session 2: Understanding the disease and how you react to it: we will review types of dementia, the associated symptoms and changes in people who have dementia, their reactions to these changes and efforts to cope, and your reactions Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 202 3. Session 3: How to respond to your and their emotion: Part I: we will explore how to identify and regulate your own emotional reactions to the persons for whom you are caring 4. Session 4: How to respond to your and their emotion: Part II: we will discuss how to recognize and respond to emotion in the persons for whom you are caring 5. Session 5: Perspective taking: we will discuss how to use situational cues to better understand the behavior o f the persons for whom you are caring 6. Session 6: Pulling it together: Preparing to communicate your new understanding: we will discuss what your behaviors communicate to the persons for whom you are caring and what you can do to use behaviors to communicate understanding 7. Session 7: Communicating your new understanding: we will discuss verbal communication strategies that can increase your chance o f understanding and appropriately responding to the persons for whom you are caring 8. Session 8: More communication strategies, review and wrap up E. A few useful reminders 1. anticipate and expect stumbling blocks 2. practice 3. be patient with yourself 4. you have these basic skills, we are just helping your develop them further F. Groundrules (distribute a m i review H andout 2) Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 0 3 Handout 1, Session 1 Session 1: Overview of group 1. Introductions a. Members meet and share current caregiving situation 2. Overview o f group a. What can you expect at each group? 1. V z hour sharing o f current caregiving situations 2. 1 hour teaching specific empathic skills a. description o f skill/provision o f information, modeling, practice exercises, discussion o f practice exercises b. out-of-session practice b. What is empathy/empathic coping? c. What are the benefits o f empathy? 1. allows more positive way o f relating due to: a. greater emotional connection b. better communication c. better understanding which leads to more effective ways o f responding and reacting to care-recipient and less problem behaviors in care-recipient 2. helps you feel better about caregiving and about your competence as a caregiver 3. reduces your distress 3. What will you learn at each session? a. Session 1: Overview o f group b. Session 2: Understanding the disease and how you react to it c. Session 3: How to respond to your and their emotion: Part I d. Session 4: How to respond to your and their emotion: Part II e. Session S: Perspective-taking f. Session 6: Pulling it together: Preparing to communicate your new understanding g. Session 7: Communicating your understanding h. Session 8: Review and wrap up 4. A few useful reminders a. anticipate and expect stumbling blocks b. practice c. be patient with yourself d. you have these basic skills, we are just helping your develop them further 5. Groundrules Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 204 Handout 2, Session 1 EXPECTATIONS OF MEMBERS AND GROUND RULES FOR GROUP • ARRIVE ON TIME It is respectful • ATTEND EVERY SESSION Honor your commitment to yourself and your fellow members by coming every week In cases o f unavoidable absence, call leaders before scheduled session • PARTICIPATE You have lots to offer The more involved you are, the more you get out o f the group • ALLOW EQUAL TIME FOR ALL Give everyone a chance to talk Minimize side conversations, they can be distracting • BE SUPPORTIVE OF EACH OTHER Be caring, thoughtful • GIVE CONSTRUCTIVE FEEDBACK Make constructive, not critical remarks Avoid pressuring people or making judgmental comments • MAINTAIN CONFIDENTIALITY Keep personal material about other members within the group, no outside discussion Feel free to share what you are learning about coping skills • DO OUT-OF-SESSION PRACTICE Practice what you learn, it maximizes the benefit from the work that you do • USE YOUR NEW SKILLS OUTSIDE OF GROUP The more often you practice, the more automatic the skills will become • INFORM LEADERS OF CONCERNS Bring concerns up in group We all need an opportunity to work with you Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 205 Session 2: Understanding the disease and how you react to it I. Dementia A. Definition 1. dementia is a loss of intellectual functions (such as thinking, remembering and reasoning) o f sufficient severity to interfere with an individual’s daily functioning 2. dementia is not a disease itself but a group of symptoms that can accompany certain diseases and conditions. In many cases the disease is irreversible and progressive 3. symptoms include a global impairment in learning and memory, orientation, capacity to solve problems of day-to-day living (reasoning ability, comprehension), judgment, language, performance o f learned perceptual-motor skills, and the correct use of social skills; may also include exaggeration of personality traits B. Behavioral manifestation o f symptoms: so what do these specific impairments look like in terms o f behavior? 1) short-term memory loss: person asks the same question repeatedly; may not remember what happened yesterday, that morning, or a few minutes earlier 2) disorientation and confusion: person may not know where he/she is or what time o f day it is 3) inability to reason clearly: person can not follow a logical argument or line of reasoning; can not solve problems effectively, e.g. if there was trouble at work in the past, the person might have stayed later and worked longer hours to get the work done; but now, working longer hours will not help reasoning abilities 4) poor comprehension: person has difficulty following complicated directions; is unable to follow or understand a storyline (TV, movie) 5) poor judgment: the person makes poor decisions such as giving money away; going out on a cold day without a warm coat; trying to cook food in a plastic dish on a gas stove 6) impairment in abstract thinking: e.g. person takes what you say very literally Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 0 6 7) problems with speech and language: person has difficulty naming things or saying what he/she wants to say; person takes a long time to respond when asked a question; person loses train o f thought; person perseverates, that is, sticks to one idea and is hard to get off o f a topic 8) distorted perception: person shows a diminished ability to recognize objects or people; person has difficulty constructing things 9) decrease in facial expressiveness 10) self-care: person shows a decreased ability to take care o f his/herself, e.g. the person forgets how to dress, feed oneself, walk or use the toilet 11) mentioned several symptoms: they usually start with slight impairments but can progress to the point where all skills o f communication and self-care are lost C. Variety of disorders can produce the syndrome of dementia 1. two of the most common forms are Alzheimer’s disease (AD) and vascular dementia (VAD), o f which multi-infarct dementia (MID) is one type 2. other causes include genetic disorders (Down’ syndrome, Parkinson’s disease), infections (Creutzfeldt-Jakob disease—progresses rapidly, AIDs) D. Means o f diagnosing dementia 1. diagnosis of dementia can not be made on symptoms alone. Need additional information. This information comes from: (a) psychological and/or psychiatric examinations (b) neurological examination (c) blood tests (d) EEG (electroencephalogram) (e) brain imaging which looks at the structure and function o f the brain, e.g. CT (computed tomography), MRI (magnetic resonance imaging), PET, SPECT (single photon emission computed tomography) 2. these tests are done to rule out reversible causes o f dementia such as nutritional deficiencies (especially vitamin B-12), endocrine disorder (hypothyroidism), physical damage (brain tumor, normal pressure hydrocephalus), medications, alcohol misuse or abuse 3. diagnosis of AD is mainly one o f exclusion o f other possible causes of dementia Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 0 7 £. Brain changes that characterize dementia 1. AD (a) associated with formation o f plaques and neurofibrillary tangles in areas of brain that are important for memory and intellectual functions 1. plaques are made up of: (a) clusters o f damaged neurons (cells in the brain) (b) and a protein called amyloid; process o f amlyoid deposition in the brain appears to be involved in cell death 2. neurofibrillary tangles are twisted fibers inside the neuron; as more tangles are formed, the cell sickens and dies (b) the damage from plaques and tangles causes the brain to shrink: the grooves on the surface o f the brain become larger and the spaces (ventricles) get bigger (c) finally AD, is associated with reduced production o f certain brain chemicals that are necessary for normal communication among nerve cells or neurons 2. Vascular dementia (VAD) or MID (a) caused by mini or little strokes which damage and kill blood vessels causing progressive damage to neurons in the brain (b) many strokes can occur before symptoms appear 3. In both AD and VAD, the damaged nerve cells in the brain results in certain behavior changes or symptoms; as the disease progresses and the damage gets progressively worse, more abilities are lost (a) how does this happen? lets examine more closely how nerve cell damage relates to symptoms (b) nerve cells have three basic functions 1. store information Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 0 8 2. use or process information 3. transmit information (c) damage to the brain interferes with neurons’ ability to receive and send messages to other neurons (d) when cells are damaged, information once stored may become unavailable or simply lost to the person 1. e.g. person may get lost in a familiar neighborhood; person may be unable to name a familiar object (e) when cells can no longer use or process information, the individual has difficulty making judgments or understanding commands/sequence o f tasks, or the results o f actions 1. e.g. person may dress with underwear on the outside o f pants; person may become flustered trying to decide which eating utensil to use; person may overreact to situations and strike out (f) when cells stop transmitting information, person starts losing voluntary control over his/her body 1. e.g. person may show difficulty walking, sitting up straight, swallowing F. Although both AD and VAD result in brain damage, the differences in causes are related to somewhat different patterns of decline and symptom constellation 1. AD (a) onset o f symptoms is gradual (b) pattern o f decline is continuous (c) however, for any given person, the particular abilities that are lost and are retained, the order in which symptoms appear and how quickly they change varies (d) typically this progression is viewed as a continuum with stages, labeled as mild, moderate or severe, depending on the degree o f dementia 1. mild stage includes: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 0 9 (e) progressive forgetfulness: person has difficulty with routine chores, forgets phone numbers that are often dialed, arrives for an appointment at the wrong time or place; misplaces familiar items (keys, wallet) (f) confusion about directions, decisions, and money management: person gets lost in his or her own neighborhood, forgets which bills are paid and may pay bills more than once or not at all; loses track o f time (g) loss of spontaneity and initiative: person loses spark or zest for life, has difficulty starting anything; becomes less outgoing and declines invitations (h) change in mood or personality: person denies forgetfulness, accuses other o f hiding things (i) disorientation o f time and place: person shows up for appointments at wrong time or place (j) communication problems: person shows shrinking vocabulary, frequent irrelevant comments, continuous repetitive words and movements, difficulty verbalizing ideas, e.g. trouble interpreting what is said or read 2. moderate stage includes: (a) difficulty recognizing close friends and family and knowing socially acceptable behavior (b) inability to retain new experiences (c) wandering (d) restlessness, especially in late afternoon and evening (e) possible irritability, fidgety or tearfulness (f) problems with self-care: person is confused about dressing (g) incontinence because of inability to find toilet or to communicate need to urinate Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. f c 210 (h) hallucinations: person may see or hear things that are not there (i) difficulty organizing thoughts and communicating problems: noticeably diminished vocabulary, difficulty naming objects, people, events; inability to comprehend what is read; difficulty reasoning out loud and increasing nonsensical speech 3. severe stage may include (a) inability to recognize family members or him/herself in the mirror (b) loss of weight even with proper diet (c) incontinence (d) inability to perform any daily care activities (e) little or no verbal communication (f) irritability (g) difficulty walking or sitting (h) increased sleep G. We have reviewed the types of impairments that people with dementia experience. Understanding the person’s limitations is important so that you have accurate expectations o f what the persons for whom you are caring can do. Accurate expectations can help you from putting the persons for whom you are caring in situations that they can not handle. This reduces their frustration and your frustration. It also is important to understand what the persons remain capable of doing so that they can find ways to stay involved. Staying involved can provide emotional connection and physical stimulation and is likely to improve their mood and functioning. Remaining abilities: 1. mild stage: (a) mechanical aspects of speaking and reading: that is, they can read from a newspaper easily and speak sentences that sound correct (but may not comprehend what reading) (b) ability to recognize and self-correct mistakes in speech Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 211 (c) ability to express complete range o f emotions and comprehend nonverbal emotional cues (d) sensitivity to nonverbal cues which means that although they are less expressive themselves, they are still responsive to nonverbal expressiveness in others (e) ability to perform daily care activities with little or no help 2. moderate stage (a) mechanical aspects o f speaking or reading: that is, they may be able to read from a newspaper or speak sentences that sound correct but word selection may not make sense (b) complete emotional expression and comprehension o f nonverbal cues 3. severe stage (c) ability to repeat sounds or generate an occasional correct phrase but the meaning is not clear (d) ability to comprehend nonverbal emotional cues as well as express some basic emotions 2. Let’s now turn to VAD/MID which has a different pattern o f decline than AD (a) onset is relatively sudden (b) progression/pattern o f decline in downhill steps, with periods of stability and possibly slight improvement between strokes (c) strokes may damage areas o f the brain responsible for specific functions, (e.g. language, memory) resulting in specific problems with those functions; there also can be more generalized symptoms such as disorientation, confusion, behavior changes 3. finally, AD and VAD/MID can coexist H. Taken together, you may now have a better understanding of some o f the potential limitations and remaining abilities of the persons for whom you are caring. But what is it actually like to have dementia? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 212 1. What is it like to be unsure o f one’s surroundings, to have difficulty - communicating, to not recognize a once-familiar face, or to be unable to do things that one has always enjoyed? (a) Some have suggested that having Alzheimer’s disease might be similar to taking a long trip in a foreign country. Your experience the following things. The language is puzzling. Customs are different. You want to call home but can not figure out how the pay phone works. You need to use the toilet but can not find the restroom and do not know how to ask and fear having an accident. You find ordering food in a restaurant difficult. When you pay the restaurant bill with unfamiliar currency, you fear being shortchanged, cheated. Tasks that are so easy at home are major challenges in this unfamiliar setting. 2. How do persons with dementia cope? What do they need? And why is it important to ask these questions? Understanding their reactions and needs will help you respond to them and create less distressing interactions n. Reactions o f persons with dementia A. We will now explore some of the reactions and phases through which persons with dementia are likely to progress. This information is based on interviews with several hundred individuals with dementia and on themes that emerged in support groups for people with dementia 1. 1* phase: recognition and concern (pre-diagnosis) (a) individuals often recognize that something is wrong well before being given a diagnosis 1. they may describe a feeling of bewilderment and anxiety: “Am I going crazy?” or “What is happening to me?” 2. others may underestimate or deny their problems (b) their main need at this point is to find help for them that can make sense of the mental changes that are threatening their lives 2. 2n d phase: denial (during diagnosis process) (a) individuals differ in their ability to accept the diagnosis Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 213 1. some feel relieved to know that there is a specific cause for their problem, that they no longer have to be guarded with family and friends and cover up their incapacity 2. others deny that they have the disease (b) their main need at this point is honesty regarding the nature o f the disease, the prognosis, and willingness of others to help; but this information will be helpful only when the individual is ready to accept the information 3. 3rd phase: emotional reactions, particularly anger, guilt and sadness (post diagnosis) a. persons with dementia experience a host feelings as they struggle to incorporate the disease into their life and their self-concept. These feelings can include shock, confusion, denial, guilt, anger, worry and anxiety, isolation and loneliness, hopelessness, helplessness, worthlessness, insecurity, fear, paranoia, embarrassment, sadness or depression. We’ll discuss these emotions and some o f the factors underlying these emotions: 1. persons with dementia may be depressed and feel hopeless, particularly in the early stages o f the disease process when they may still be aware o f their impairments and poor performance; they may be grieving the loss o f memory and intellectual capabilities as well as the loss o f daily functioning (it is also true that in the early stages o f AD, learning and memory impairments can resemble those impairments occurring in depression so reinforces need for thorough evaluation); (a) persons with dementia may feel anxious, particularly when they are unable to figure out and cope with the world; when they have fears o f becoming incapacitated; or have many unanswered questions, such as “What will happen to my spouse?” “What will happen to my kids?” “What will happen to me?” “My savings?” “My health?” “My friends?” “My work?”, “My everything?” (b) persons with dementia may feel uncertain, insecure and a loss of safety; these feelings can be reflected in fears and a desire to “go home” (c) persons with dementia may feel angry and frustrated when they are unable to perform tasks, control their symptoms, or when they are confronted with tasks that are too difficult Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 1 4 (d) persons with dementia may be suspicious, which comes from a mix o f anger and fear and not being able to make sense o f things (e) persons with dementia may become hostile, as a result o f being unable to understand things or to make themselves understood (f) persons with dementia may feel a sense o f decreased self-esteem and self-worth due to a loss o f control and mastery or to negative reactions o f others 4. 4d > phase: coping efforts (a) people with dementia are freed with the task o f recognizing that they have increasingly limited resources (b) they respond to the task in a variety o f ways, some o f which are more helpful than others; we will review these responses and things that you can do to support their coping efforts 1. some people seek an explanation for their dementia in which case they need to be encouraged to talk about their problems and their feelings; they need to have their disabilities and their strengths acknowledged; they need to be engaged in activities that are appropriate for their level o f functioning 2. some individuals form beliefs and attitudes about the cause o f the illness that suggest that they brought it on themselves, e.g. “I must have done something wrong to have ended up like this” or “This happened to me because I am the type o f person to whom things always happen” or “There is nothing I can do to fight this.. .its G- d’s will” (a) they may attribute dementia to something for which they may be guilty, e.g. a bad life, a wrong deed, or something internal and uncontrollable; as a result they are likely to feel depressed and cope poorly (b) in this case they need to be helped to recognize that they are not responsible for the disease and that, while they cannot control much o f the disease process, they still have some power over their lives Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 255 3. some persons defend against changes through: temporary denial, ignoring loss or minimizing severity of impairment; withdrawal; blaming others or external situations; other physical complaints; focusing on skills and interests that are sill intact; pep talks, recall of past life crises and how handled, depending on relationship with family and friends, humor, religion, social comparison 4. other persons with dementia may make efforts to enjoy life as much as they can or see things positively (a) they may make efforts to improve their situation by: 1. learning to be content with a smaller number o f activities rather than continuing to try to do many activities that they are no longer able to do; and switching to activities that give them a sense o f purposefulness 2. looking for gratification through the enjoyment o f others 3. creating a sense of belonging: feeling better about themselves when with other people who had disease and who were at similar stage (c) overall, persons with dementia needs are to maintain dignity and a sense o f usefulness, avoid dependency, be accepted by others, maintain interpersonal relationships, establish a sense o f self- control as well as control over their immediate environment (d) you can help meet these needs by asking what they think and feel; establish a schedule of specific responsibilities or activities within the home or living space; monitor interactions 5. 5th phase: maturation (a) many who live with dementia for years may learn to accept the losses on some level (b) they can achieve an attitude of “living one day at a time until I die” (c) these reactions may create feelings of respect and intimacy with caregivers (d) at this point, their needs are to feel worthwhile, to maintain mastery of something, to accept the need for others, to have intimacy, to have mobility, to maintain basic biological functioning Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 1 6 6. 6th phase: separation from self (e) individuals with dementia are capable o f reacting but do not have the ability to be active in their environment (f) at this point, their needs are to be comfortable and secure HI. Your reactions to the changes A. Types o f reactions: behaviors and feelings (e.g. criticism, withdrawal/avoidance, anger, blame, guilt) B. How does it make you feel to react those ways? C. What is the impact on your relationship with the care-recipient? D. Bottom line: when you react negatively, the relationship is damaged further and you feel badly; when you react positively, the relationship is maintained or enhanced and you feel better IV. Assign out-of-session practice: observe your reactions to the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 1 7 Session 3: How to respond to your and their emotion: Part I I. Check-in with current caregiving situation II. Review out-of-session practice: monitoring your reactions (behaviors and feelings) to the persons for whom you are caring. W rite on board som e o f ca reg iver’ s reactions. Then f i t their reactions in to the fo llo w in g questions, restating in statem ent form at. A. Establish connection between experiences, behaviors and feelings 1. When the persons for whom you are caring did X, what did you do? 2. When the persons for whom you are caring did X, how did you feel? B. What we just did was to identify experiences, behaviors and feelings that you have while caregiving 1. an experience is something that happens to you (a) experiences can be overt—external events capable o f being seen by others, such as, “Dad yelled at me when I tried to get him to sit down”. (b) experiences can be covert— inner events that can not be seen by others, for example, “ I keep having thoughts about placing mom and being on my own again.” 2. a behavior is something that you do or fail to do (a) behavior can be overt, for example, “I spent the whole day doing things for my wife—washing her clothes, shopping, picking up her medications, paying her bills.” (b) behavior can be covert, namely through thoughts, for example, “Before my brother came over, I planned everything that I was going to say to him.” 3. a feeling or emotion, is the subjective feeling of pleasantness or unpleasantness that is associated with experiences or behaviors; feelings are associated with specific thoughts, physiological arousal, and a range o f tendencies to act (a) feelings can be expressed, for example, “I got very angry when mother asked me for the 10th time what day it was.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 218 (b) feelings can be felt, but not expressed, for example, “I was disappointed in my husband but did not let on that I was”. 4. when we talk about emotions today, it is helpful to understand that emotions are linked to specific behaviors and experiences (a) e.g. “I feel frustrated (feeling) when she does not remember that I told her I was going to the store and she accuses me o f not telling her anything (experience). Then, when I say that I did tell her and that she just does not remember (behavior), she denies it (experience) and I get angry (feeling). I wonder how much more of this I can take (behavior)?' (b) so part o f identifying emotions is understanding behaviors and experiences or situations with which they are associated. We will talk more about this point throughout our sessions m . Labeling your own emotions and reactions to the persons for whom you are caring A. Types o f reactions. Go back to board a n d categorize ea rlier exam ples using categories below ; then g ive other exam ples then caregivers d id n o t provide. 1. lets begin with experiences involving the persons for whom you are caring. What did the person do? What were your experiences? 2. What did you do? What were your behaviors? (a) behaviors can include: criticizing, withdrawing/avoiding, blaming, denying that she can not do it, place inappropriate demands on care-recipient, angrily confront or otherwise loose control over own emotional reaction to the care-recipient; (may exaggerate losses, assume losses that are not present, or deny changes) 3. How did you feel when you reacted those ways? L ist fe e lin g s (a) how intense was your emotion or emotions? B. What kind o f effect did your reactions have on the persons for whom you are caring? 1. when you react negatively, your relationship with the persons for whom you are caring may suffer and you may feel badly; when you react positively, the relationship is maintained or even enhanced and you may feel better Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 1 9 2. one way to react positively to the persons for whom you are caring is to learn how to identify the situations/experiences and behaviors that create certain feelings in the persons for whom you are caring and then how to respond appropriately to those feelings, either by acknowledging the persons’ feelings directly or indirectly (a) an example o f a direct response to feelings o f the persons for whom you are caring might be something like, “It really hurt you when I asked you to set the table and then did it myself because you were having trouble doing it. I am pleased that you helped me. Thank you.” (b) an example o f an indirect response to the feelings o f the persons for whom you are caring is one in which you identify the possible feeling(s) and respond to it but do not label it for the person. For example, you are confronted with a situation in which the persons for whom you are caring is asking to go home or wanting to leave. You think that this behavior means that she/he is afraid of his/her surroundings, feeling insecure, etc. You respond “In a little while. But for right now, I want you to know that I am with you, you are safe and I care.” IV. Rationale for identifying your emotions A. You may ask yourself, “ if the goal is to better identify the feelings o f the person for whom I am caring, why are we spending time on helping me get better at identifying my own emotions?”. 1. You will become more aware o f your feelings and reactions. Increasing awareness is important for a variety o f reasons: (a) a better understanding of your own feelings will make it easier to identify and respond to emotional reactions in the persons for whom you are caring. This is because many of experiences and behaviors that are associated with feelings in you are the same in the persons for whom you are caring (b) better awareness of your own reactions will help you gain a greater sense o f control because being aware allows you to slow down your reaction and allows for the possibility of acting differently I. when emotions are very intense and occurring quickly, they can overwhelm our reasoning and problem-solving ability and can make us act impulsively Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 220 2. until we are aware o f our feelings and where they come from, it is difficult to decide whether or not we want to act on them—we just do! Knowing how you feel is part o f knowing if you want to act on your feelings 3. furthermore, when you feel in better control o f your emotional reactions to the persons for whom you are caring, you will experience less stress. When you are feeling less stressed, so too will the persons for whom you are caring; for example, when you are angry with the persons for whom you are caring, they are likely to know and get upset; they are likely to know and respond because they maintain and even show an increased sensitivity to your emotional reactions (b) part o f acting differently is figuring out appropriate ways o f sharing your feelings with the persons for whom you are caring 1. appropriate sharing requires that you keep in mind that you can not reconcile old relationship problems, past wrongs or misdeeds with the persons for whom you are caring (a) sharing your negative feelings as a way to rectify or reconcile old history is likely not to get you the outcome that you want and leave you feeling worse (b) this is because the person can not follow the logic in your arguments; they also may not remember things in the past so they will deny them (c) remember from last session that the disease has destroyed parts of their brain that are involved in reasoning and problem-solving 2. thus, you will need to find other ways to manage the feelings associated with past relationship problems (a) this will be difficult, particularly when you experience the persons for whom you are caring doing the same behavior that pushed your buttons before the illness. However, although the behavior is the same, the willfulness is not (b) the behavior can be a rote or automatic behavior, like driving a car or eating. It does not require deliberate thought. For example, when driving, have you ever had the experience o f getting to the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 221 end o f a street and realizing that for the last mile, you have been on automatic pilot and do not remember a single thing that you passed (c) their behavior also can be a reaction to emotions that can happen impulsively—-just like in us! B. So, taken together, the goal for today’s session will be to help you get better at identifying your own emotions and controlling how you express them V. Identifying your emotions A. Introduction 1. earlier we defined emotions as the subjective feeling o f pleasantness or unpleasantness that is associated with experiences or behaviors (a) when we feel something, there are a variety of processes taking place in us that contribute to the feeling (b) these processes include internal reactions such as physiological changes, e.g. heart racing; our interpretations o f the situation preceding our emotional reaction; and memories and expectations o f past experiences (this is link to having buttons pushed) (c) we then express what we are feeling through external reactions, e.g. facial expressions, gestures, changes in voice tone, etc. 2. we will go over these components in more detail but before we do, it is important to note that feelings are complex. Furthermore, people often experience multiple feelings at once. So it can be difficult to identify all o f the feelings that you may be experiencing at once. You will need to be patient with yourself B. Components 1. physiological/internal (a) emotions are associated with internal responses such as changes in blood pressure, heart rate, sweating, breathing, intestinal activity, salivation (b) examples. What are the physiological reactions that typically occur when you are feeling?: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 222 1. anxiety 2. anger 3. surprise 4. disgust 2. expressive components, or the ways we communicate how we feel. What are ways that we communicate emotion? (a) one way that we communicate how we feel is verbal: we say how we are feeling 1. e.g. “I really liked Mrs. Smith. She understood me. It made me feel good to walk into her office. I really wanted to try hard for her’' (b) another way that we communicate how we feel is through our facial expressions 1. people usually are able to identify the emotion that another is feeling based on facial expressions (a) e.g. crying, smiling, frowning accompany what emotions? 2. D istribute H andout 1: p ictu res o f fa cia l expressions (a) some emotions are more easy to identify by facial expressions than others: 1. anger, disgust, fear, sadness, surprise and happiness probably are most easily recognizable 2. negative emotions are more easily recognizable because they seem to have more distinct facial signals than positive emotions; this means that you may have to look harder for expressions of positive emotions (c) a third way that we communicate how we feel is through our body language 1. body language includes our walk, body posture and body orientation (facing/not feeing), gestures, headnods, bodily contact (touch, no touch), proximity (how close to other person were are), and eye contact Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 223 (a) posture: closed posture—folded arms in front o f body can indicate dislike for a person and the need to protect oneself; open posture— arms relaxed down or spread wide—can be welcoming (b) leaning forward—indicates interest in what another person is saying (c) slight head nod every so often—indicates listening (d) eye contact: looking at someone who is talking shows interest; looking down or away conveys dislike or guilt or boredom (e) touch: can communicate reassurance and safety but it also can mean threat so need to be careful how touch others (f) gestures: hug = ‘I like you’; smile = ‘I feel friendly toward you’ 2. some examples? What body language expresses the following emotions: a. frustration b. caring c. embarrassed (d) a fourth way that we communicate how we feel is through paralanguage 1. how many o f us have gotten upset with someone and said something like, “Why did you say it like that? or “Its is not what you just said but how you said it” 2. paralanguage involves communication above and beyond the spoken word—the manner in which something is said (a) tone of voice: how quickly we say something, where we pause or sigh or place emphasis on our words, how loud we talk or even not talking at all (b) tone o f voice communicates a great deal; for example, a soothing, singsong voice (like that which use with young infants) can be calming; but it also may make others feel talked down to (c) emotions often are associated with noticeable shifts in tone o f voice or vocal cues; this is often how we can distinguish between different intensity levels o f an emotion Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 2 4 3. examples. What manner in which we say something indicates the following feelings?: a. irritation b. affectionate c. insecure 3. Taken together, we communicate how we feel through our words as well as through our fecial expressions, body movements, gestures, posture, way we walk, variation in speech (tone, intonation, pace), eye contact, interpersonal distance D. we have been talking about how we express our emotions. Lets return briefly to the situational determinants o f our emotions, that is, our experiences 1. the environment in which we find ourselves influences how we feel 2. situations influence how we feel in part because o f our interpretation o f the situation; that is, how we think about an experience may affect how we feel (a) e.g. a specific situation does not produce embarrassment, but rather our perception and interpretation o f the situation produces embarrassment (b) when you tell yourself that your mom, wife, husband, dad is not cooperating because they want to get a rise out o f you, you will feel angry and frustrated. But if you tell yourself that they are not cooperating because they do not understand what was asked of them, you will less frustrated VI. Assign out-of-session practice exercises: describe feelings using all components of emotion; d istrib u te handout to accom pany exercises Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 2 5 Practice Exercise, Session 3 PRACTICE EXERCISE In this exercise you are asked to describe what you feel when you feel different types of emotions. The goal o f this exercise is to help you get better at identifying your own emotions and the ways in which you express them. This goal is important for several reasons: 1) your impaired family member is increasingly sensitive to your emotional reactions, 2) better awareness o f your own reactions (and where they come from) will help you feel more in control and better equipped to decide whether or not you want to act on your feelings and 3) better awareness will make it easier to identify and respond to your impaired family member’s emotional reactions. When describing what you feel, try to be as concrete as possible: How does you body react? What happens inside you? What do you feel like doing? Consider the following examples: Example 1 Example 2 ACCEPTED: When I feel accepted, I feel warm inside. I feel safe. I feel free to be myself. I feel like sitting back and relaxing. I feel I can let my guard down. I feel like sharing myself. I feel some o f my fears easing away. I feel at home. I feel at peace. I feel my loneliness drifting away. SCARED: When I feel scared, My mouth dries up. My bowels become loose. There are butterflies in my stomach. I feel like running away. I feel very uncomfortable. I feel the need to talk to someone. I feel like whining or crying. I feel useless. I am unable to concentrate. I feel very vulnerable. Next, describe how you express or communicate your feelings. What do you say? How do you say it? (tone o f voice, loudness, rate o f speaking). What is your body language? (e.g., body posture, body orientation, gestures, proximity to others, eye contact). Example 1 Example 2 ACCEPTED: When I feel accepted, SCARED: When I feel scared, I speak quietly, slowly and softly. I speak quickly. I also may not speak at all. I sit facing the person and close to them I sit still, my body poised for action. I make good eye contact. I do not hold eye contact. I scan the room. I say personal things about myself. I may say what is frightening me. Now its your turn to try. Try to picture yourself in situations in which you have actually experienced the following emotions. How do you feel? How does you body react? What happens inside you? What do you feel like doing? What do you say? How do you say it? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 2 6 What is your body language? Remember to describe what you feel as concretely as possible. You are not expected to do all o f these emotions. Try a few, possibly the ones with which you have difficulty when caregiving or which you experience most often. 1. ACCEPTED 15. DEFENSIVE 29. LONELY 2. AFFECTIONATE 16. DISAPPOINTED 30. LOVING 3. AFRAID 17. FREE 31. REJECTED 4. ANGRY 18. FRUSTRATED 32. REPULSED 5. ANXIOUS 19. GULITY 33. RESPECT 6. ATTRACTED 20. HOPEFUL 34. SAD 7. BORED 21. HURT 35. SATISFIED 8. BELONGING 22. INFERIOR 36. GRATIFIED 9. COMPETITIVE 23. INTIMATE 37. SUSPICIOUS 10. CONFUSED 24. EMBARRASSED 38. JEALOUS 11. SUPERIOR 25. JOYFUL 39. TRUSTING 12. ASHAMED 26. INSECURE 40. HELPLESS 13. ISOLATED 27. PROUD 41. PLEASED 14. DEPENDENT 28. USEFUL 42. ENVIOUS Once you have described how you feel when you feel these emotions, you will have a wider repertoire of words, phrases, and statements both to describe your own emotional states and to identify emotional states in others. Listening to and understanding your own emotions is necessary for listening to the emotions of others. It is also important to listen to yourself when you are experiencing difficult emotions because it will help you gain better awareness of your emotions. This awareness will help you decide whether or how you will react to them. Remember that feelings and emotions are understood best in the context o f the experiences and behaviors that give rise to them. Adapted from Egan, G. (198S). Exercises in helping skills: A training manual to accompany The Skilled Helper (Third Edition). Monterey, CA: Brooks/Cole Publishing Company. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 2 7 Handout to accompany Practice exercise. Session 3 It is helpful to think about the hundreds o f emotions that you could experience, along with their blends, variations and subtleties as belonging to a few basic families o f emotions. Below is a list o f some of these families o f emotions and what could be considered members o f the families: • Anger: fury, outrage, resentment, wrath, exasperation, indignation, vexation, acrimony, animosity, annoyance, irritability, hostility, and perhaps at the extreme, pathological hatred and violence • Sadness: grief sorrow, cheerlessness, gloom, melancholy, self-pity, loneliness, dejection, despair, and when pathological, severe depression • Fear: anxiety, apprehension, nervousness, concern, consternation, misgiving, wariness, qualm, edginess, dread, fright, terror, and when pathological, phobia and panic • Enjoyment: happiness, joy, relief contentment, bliss, delight, amusement, pride, sensual pleasure, thrill, rapture, gratification, satisfaction, euphoria, whimsy, ecstasy • Love: acceptance, friendliness, trust, kindness, affinity, devotion, adoration, infatuation • Surprise: shock, astonishment, amazement, wonder • Disgust: contempt, disdain, scorn, abhorrence, aversion, distaste, revulsion • Shame: guilt, embarrassment, chagrin, remorse, humiliation, regret, mortification Adapted from Bullmer, K. (1975). The art of empathy: a manual for improving accuracy of interpersonal perception. New York: Human Sciences Press Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 228 Session 4: How to respond to your and their emotion: Part II I. Sharing o f current caregiving issues II. Review out-of-session practice (H ave caregivers share som e exam ples) HI. Identifying their emotions A. Just as we discussed during last session the way in which being able to identify your emotions can improve your interactions with the persons for whom you are caring, we have reasons for why it is helpful to learn how to identify the emotions o f the persons for whom you are caring 1. before we discuss the reasons why you would want to get better at identifying the emotions o f the persons for whom you are caring, what were some o f the reasons that we discussed for getting better at identifying your own emotions? (a) it will help you be more aware o f your own reactions to the persons for whom you are caring: 1. awareness helps you slow down your reactions and allows for the possibility o f acting differently which will lead to greater feelings of control (a) until we are aware o f our feelings and where they come from, it is difficult to decide whether or not we want to act on them— we just do! Knowing how you feel is part o f knowing if you want to act on your feelings 2. when you feel in greater control of your emotional reactions to the persons for whom you are caring, you will experience less strain and less negative feelings (b) by gaining control over your emotional reactions you may be better able to respond appropriately to the persons for whom you are caring; more appropriate responding contributes to building and maintaining a trusting and caring relationship; (particularly important because o f the persons for whom you are caring increased sensitivity to your emotional reactions) Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 2 9 1. the persons for whom you are caring will feel more secure and comfortable about expressing their needs and feelings and will be more likely will comply with your requests and instructions 2. thus, what we perceive as difficult behaviors may diminish and they may be easier to manage and care for 2. these outcomes are related to the rationale for getting better at identifying the emotions o f the persons for whom you are caring. A lot of what we call problem behaviors are really just expressions o f emotions in the persons for whom you are caring (a) often body language and other non-verbal behavior are the persons’ main source o f communicating how they feel and what they need (b) this is because they are less able to use verbal messages effectively to communicate how they are feeling (c) therefore, learning how to pay attention to the nonverbal ways that they communicate their emotion— their body language, facial expressions, tone o f voice— will increase the chance that you will better understand what they are feeling and what they may need and be able to respond appropriately (d) this type o f interpersonal perception is important in determining your relationship with the persons for whom you are caring because how you perceive the persons for whom you are caring influences how you respond to him/her (e) furthermore, the responses of the persons for whom you are caring will be dependent on their perception of you 3. what we are going to do today is to learn how to become better perceivers o f the persons for whom you are caring B. Looking for cues 1. the first step in becoming better perceivers o f the persons for whom you are caring—that is, becoming better able to identify the persons’ feelings and needs—is to review the components of emotion 2. components of how we experience and express emotions Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 3 0 (a) one component is physiological 1. what were some o f the physiological reactions that we talked about with respect to experiencing emotions? Changes in blood pressure, heart rate, sweating, breathing, intestinal activity, salivation 2. so what might you look for in the persons for whom you are caring? (a) e.g. increases general muscle tension, breathing heavy, might indication that the person is feeling frightened or anxious (b) other examples o f reactions? (b) other component is facial expressions 1. it may be harder to read the facial expressions o f the persons for whom you are caring because individuals with dementia may no longer be as animated in their facial expressiveness as they once were (a) compared to how we express emotions, the face o f the persons for whom you are caring may appear to be rigid, almost like a mask, particularly in dementia due to stroke or Parkinson’s disease (b) however, the persons for whom you are caring do still show some small changes in facial expressions; you just need to look more closely and carefully, particularly to their eyebrows, eyes, nose, mouth (c) eyes in particular may give an indication of emotion: things to look for are widening or narrowing of eyes, eye movement, and tears 1. tears can be indication of extreme emotion such as happiness, fear, sadness 2. tears also can indicate swings in mood that can accompany dementia; these mood swings may be triggered by grief over losses o f home, families, jobs, themselves; memory loss, may even repeatedly mourn the loss o f a long-dead relative 2. review p ictu res (a) happiness: lower eyelids crinkle, cheeks are raised, mouth smiles Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 31 (b) sadness: face droops or appears slack, mouth may tremble (c) surprise: fleeting facial expression: eyebrows arch high, eyes open wide, and jaw drops (d) fear: eyebrows rise up and draw together, eyes are open and tensed, lips stretched back (e) anger: lowered, drawn eyebrows, staring eyes and a rigid mouth (f) disgust: wrinkled nose and raised upper lip (c) a third component is body language 1. that is, the body posture, gestures, responsiveness to or apparent need for contact and proximity and eye contact of the persons for whom you are caring all indicate how the persons are feeling (a) e.g., walking more slowly than usual, slouched or hunched shoulders may indicate that the person is feeling hopeless or depressed (b) other examples? 2. the key to knowing what body language may mean is to know the typical body language of the persons for whom you are caring: how they usually sit, if they lean to one side, if they usually look down toward the ground (a) if you have a sense of the person’s normal posture, any change, no matter how slight, may carry an important message (b) some examples 1. increased restlessness, e.g. pacing, jiggling feet, rubbing body parts can indicate that the person is feeling upset or anxious; has to use the toilet 2. lack of/avoidance o f eye contact may mean that the person is not ready or willing to listen; also the person’s body position may be faced away from you Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 3 2 3. backing away from you, turning head or body away, walking away, pulling away from you, shrinking away from being touched all can indicate that the person is non-receptive to what you are asking for doing and that you should try again later 3. if you ignore these cues, you likely will have problems with the persons for whom you are caring (d) a fourth component is paralanguage 1. communication above and beyond the spoken word— manner in which something is said: “Its is not what you just said but how you said it” (a) the tone o f voice, how quickly they say something, where they pause or sigh or place emphasis on their words, how loud they talk or even not talking at all indicate something about how the persons for whom you are caring are feeling (b) even when you can not make sense o f the persons’ words or their attempts to speak, you can listen for clues in the speed, pitch and volume o f speech 1. a loud tone can indicate feeling upset 2. speaking at an excessive rate can indicate feeling out of control or anxious and less able to cope with demands o f given situation (c) you will want to look for these cues so you can respond to the persons in a way most appropriate to how they are feeling 2. other examples? IV. Becoming an objective observer A. We have been talking about the types o f cues to look for to help you better understand the feelings and needs of the persons for whom you are caring B. Although this may sound easy, it can be very difficult to accurately perceive these cues and understand how the persons for whom you are caring are feeling or experiencing their environment Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 23 3 1. the difficulty comes from the fact that we all have a natural tendency to evaluate, to judge, and to approve or disapprove of the behavior o f the other person based on our own emotions, needs, experiences—our own frame of reference (experiences can include past experiences with the person for whom you are caring) (a) example: you are having difficulty perceiving the fact that the person for whom you are caring is flustered or overwhelmed by a task that you asked him/her to do; this difficulty is due to the fact that you evaluated the person’s behavior and decided that she/he is not doing the task because he/she is lazy and does not want to try hard enough or wants you to do it 1. your evaluation may be premature, not based on accurate or complete perceptions o f the situation 2. this point can be very difficult to get used to, particularly if you have had similar experiences with the person in the past, before he/she got dementia (b) other examples? 2. evaluations or judgments about the persons for whom you are caring can interfere with your ability to listen to and perceive accurately their behavior and thus, interfere with your ability to respond most effectively to the persons for whom you are caring (in this case o f the previous example, reduce their frustration and distress by asking them to do a less difficult task; you may also feel less distressed because you no longer believe that the person is deliberately not helping you) 3. in order to become better perceivers, you need to learn how to suspend judgment and not evaluate what you observe; that is, learn to remove yourself from the situation and become more like a fly on the wall or a scientist recording what is happening, with no judgment or evaluation of it C. So how does one do this? How do you leam to suspend your judgments about the persons for whom you are caring and be a more objective observer in a way that improves the accuracy of your perception of the person and thus, your responses to that person? 1. we’ll begin by looking more closely at the process by which you perceive the person for whom we are caring (a) perception involves visual observation of characteristics o f the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 3 4 (b) however, only external physical characteristics, such as clothing, posture, personal hygiene, are easily observed. Internal characteristics such as intentions, attitudes, and abilities can not generally be observed visually and must be inferred or deduced by reasoning 1. thus, you may use the appearance, behavior and language of the persons for whom you are caring to make inferences about their internal characteristics 2. for example, you may observe that the person is not dressed or shaved, and conclude that the person is lazy; however, alternative explanations include that the person no longer remembers how to shave or dress, or is too depressed to do those things. (c) as you can see from this example, inferences about the internal characteristics o f the person can be off; accurate inferences become even more difficult when the persons for whom you are caring presents cues that can be accepted at face value 1. for example, the persons for whom you are caring may say that they want a drink but when you give them a glass o f juice they push it away; what they may have meant was that they wanted something to eat but could not find the right word; or they may want water not juice but, again, are not able to say what they want 2. in this case, if you were to judge the person as being unappreciative or difficult, then you may not have uncovered that the person wanted something else instead (d) as we mentioned earlier, our own attitudes, beliefs, values, motives, past learning experiences, memories and thoughts all will influence the inferences we make about the internal characteristics, e.g. feelings, needs, o f the persons for whom you are caring 2. as a result of past learning, each of us has developed certain attitudes, beliefs and values. These contribute to a relatively fixed set o f beliefs about what other people are like and how they operate. In this case, we are focusing on beliefs about the persons for whom you are caring (a) without realizing it, you are likely to have a “built-in” theory about what the persons for whom you are caring is like and how they operate; this Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 235 theory or set o f beliefs influences your perception of the persons for whom you are caring and can lead to misperception o f their behavior 1. misperceptions happen because the theory influences what behaviors you pay attention to and how you interpret them (a) e.g. under most conditions, there are many more things to be perceived about a person than can possibly be paid attention to simultaneously (b) as a result, we must select what we respond to, giving more attention to some things while ignoring others (c) since we must respond selectively to many things in our environment, we must determine which things to pay attention to. Our past experiences, expectations, and beliefs will influence what we pay attention to and what we ignore and thus, influence the accuracy o f our perceptions (d) this is why two different people, each perceiving the same person at the same time but each having different motives, thoughts, experiences and theories about the observed person’s behavior, could infer different internal characteristics about the same person 3. taken together, your expectations and beliefs about the persons for whom you are caring will influence your perception of them and determine your responses toward them (a) often, because your beliefs about the behavior or feelings o f the persons for whom you are caring may be inaccurate, then so to may be your response to the person 1. e.g. you believe that the person for whom you are caring is not following directions just to annoy you or to be difficult and you may push the person harder. You may make him/her more agitated and apparently uncooperative. However, if you had been able to suspend your judgment you may have seen that the real reason the persons for whom you are caring is not following directions is because he/she is confused and unable to follow lengthy instructions 2. by increasing your awareness of your expectations, beliefs or judgments about the persons for whom you are caring, you will be able to respond Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 236 more appropriately; e.g., in the above example, breaking the instructions into more manageable steps (b) consequently, you will want to focus on gaining awareness o f the factors that influence your responses to the persons for whom you are caring; particularly your beliefs or “built in” theory about the persons for whom you are caring 1. however, understanding your beliefs and how they relate to your perception of the persons for whom you are caring and you reactions towards the person takes practice. This is because our beliefs are so automatic that they often are out o f our awareness 2. as a result, gaining an awareness o f your beliefs about the person for whom you are caring requires making a special effort to look at yourself critically 3. we will work on helping you become aware o f how your beliefs and attitudes about the persons for whom you are caring and caregiving in general may influence your perceptions o f that person V. Assign out-of-session practice exercises Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Practice Exercises, Session 4 237 PRACTICE EXERCISES Now that you have considered feelings and emotions in yourself you can review your ability to identify emotions that are expressed by others or implied in what they say. Try to following: I . Turn off the sound on your favorite TV program. You are likely to be able to follow the story line fairly well. How? The actor’s fecial expressions, eye contact, posture and gestures all convey a large amount o f information. In fact, these are elements o f non-verbal communication. 2. Read the following statements; then write down a number o f adjectives or phrases describing how the speaker feels. Consider the following example: Example A twenty-seven year old man is talking to a minister about a visit with his mother the previous day. “I just don’t know what got into me! She kept nagging me the way she always does, asking me why I don’t visit her more often. As she went on, I got more and more angry. (He looks away from the counselor and looks toward the floor.) I finally began screaming at her. I told her to get off my case. (He puts his hands over his face.) I can’t believe what I did! I called her a b-tch. (Shaking his head.) I called her a b-tch about ten times and then I left and slammed the door in her face.” How does this person feel? Embarrassed, guilty, ashamed, distraught, amazed, remourseful. extremely disappointed with himself._________________________ NOTE: This man is talking about his anger, but at the moment he is feeling and expressing the emotions listed above. Now try your hand at the following cases: a. A woman, S3, about to get divorced: “My husband and I just decided to get a divorce. (Her voice is very soft, her speech is slow, halting). I really don’t look forward to the legal part of it—(pause)—to any part of it to tell the truth. I just don’t know what to expect. (She sighs heavily.) I’m well into middle age. I don’t think another marriage is possible. I just don’t know what to expect.” What does this person feel? How intense is the emotion or emotions and how do you know? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 3 8 b. A man, 45, with a daughter, 14, who was just hit by a car: “I should never have allowed my daughter to go to the movies alone. (He keeps wringing his hands.) I don’t know what my wife will say when she gets home from work. (He grimaces.) She says I’m careless—but being careless with the kids—that’s something else! (He stands up and walks around). I almost feel as if I had broken Karen’s arm, not the guy in that car. (He sits down, stares at the floor, and keeps tapping his fingers on the desk.) I don’t know.” What does this person feel? How intense is the emotion or emotions and how do you know? c. A woman, 68, diagnosed with mild-moderate Alzheimer’s disease, does not recognize a person who just said hello to her and addressed her by name: “Once again, there was another person that I did not know. (She sighs.) As we walked along the street, I attempted to make small talk with the stranger hoping that something would jog my memory. (She shakes her head and stares out into the center o f the room.) But I just could not recall who he was and finally said to him, ‘Please forgive me. I know that I know you, but it is just one o f those days. I simply can’t bring your name to mind.’ He looked at me, puzzled, and said slowly, ‘Diane, I’m your cousin’.” (She looks down as tears well in her eyes.) What does this person feel? How intense is the emotion or emotions and how do you know? d. A man, 56, in the early stages of Alzheimer’s disease, gets lost on his way home from his summer cabin out o f state. “My mind was in turmoil and my stomach was in knots. I stared through the windshield at nothing in particular. (He speaks quickly and raises his voice a bit.) I then saw a Texaco sign ahead and, since I had a Texaco credit card, I decided to stop for gas. I pulled off the interstate and into the station to the gas pump. I filled the tank and went inside to pay. The girl took my credit card, looked at it, and said, “This is not a Texaco. We can’t take this card’. I asked her what other credit cards did they take and she said ‘none’.” (He balls his hands into fists and clenches his teeth.) What does this person feel? How intense is the emotion or emotions and how do you know? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 3 9 3. Now try this same exercise with situations that happened with the person for whom you are caring. This time, also try to identify some o f your beliefs about the person for whom you are caring that may have influenced how you perceived what they felt. a. Situation 1: What did the person for whom you are caring feel? How intense was the emotion or emotions and how do you know? What were some o f your beliefs about the person that may have influenced your perception o f the situation and how they felt? b. Situation 2: What did the person for whom you are caring feel? How intense was the emotion or emotions and how do you know? What were some o f your beliefs about the person that may have influenced your perception o f the situation and how they felt? Adapted from Egan, G. (1985). Exercises in helping skills: A training m anual to accompany The Skilled Helper (Third Edition). Monterey, CA: Brooks/Cole Publishing Company. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 4 0 Session S: Perspective-taking I. Sharing o f current caregiving issues II. Review out-of-session practice (caregivers share exam ples) m . Mini-review: from their perspective A. Up until now we have discussed ways in which you can become more aware of your own feelings and the feelings and needs of the persons for whom you are caring 1. we have discussed how becoming more aware o f your emotions will help you gain better control over your emotional reactions, which will help you respond better to the persons for whom you are caring (a) this awareness is important given that how you express emotions non verbally—tone o f voice, facial expressions, body language—has a big impact on the persons for whom you are caring (b) the persons for whom you are caring respond to your tone o f voice and body language even when they do not understand your words 2. we also have discussed how to figure out the needs and feelings o f the persons for whom you are caring (a) we discussed the importance o f paying close attention to their body language, facial expressions, voice, etc. because, as their ability to express themselves verbally declines, they become increasing dependent on non verbal behavior to express how they feel and what they need (they have difficulty using words to tell you what they want) (b) we talked about ways to become a more accurate perceiver by: 1. learning to read the facial expressions, body language, manner of speaking o f the persons for whom you are caring 2. identifying the judgments, beliefs, attitudes and expectations that you have about the persons for whom you are caring: why they are doing what they are doing (a) these beliefs influence the accuracy o f your perception and can lead to miscommunication which in turn can have negative effects on both you and the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 241 (b) for example, you may think that the persons for whom you are caring is not doing something that you have asked him/her to do because he/she is just being lazy or is manipulating you. However, the real reason is because he/she can not remember how and is too frustrated or embarrassed to say so. What he/she needs is reassurance and an easier task but your beliefs about the person will interfere with you ability to respond to these needs. In fact, you may push the person harder or get angry with him/her, which will increase the tension and upset for both of you (c) identifying your beliefs about the persons for whom you are caring and challenging these beliefs will lead to a more accurate understanding o f the behavior of the persons for whom you are caring. A more accurate understanding will help you be able to respond in new, more helpful ways; e.g. providing reassurance and helping the person for whom you are caring respond to his/her changing environment and reduce distress (d) the bottom line is that how you perceive the persons for whom you are caring will influence how you respond to them; in addition, their response towards you will be dependent on their perception o f you (hence the need to know how you are coming across to them in terms of your emotions) (e) thus, how you perceive the persons for whom caring and how they perceive you are important in determining your relationship with them B. Today, we are going to focus on situational cues to how the persons for whom you are caring are feeling 1. there is a strong link between what is happening around the persons for whom you are caring and their emotional reactions and behaviors 2. emotional reactions are likely to be expressed through behaviors: remember that the persons for whom you are caring increasingly rely on body language to their express feelings (a) for example, frequently, the difficulty or inability to communicate a need, feeling or source o f discomfort leads to what we consider disruptive or problem behaviors (b) likewise, not being able to understand spoken requests or directions can result in problem behaviors Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 4 2 (c) thus, understanding the basis for these behaviors can be the first step in helping you deal with them effectively 3. thus, if you can learn better the situations that tend to trigger certain negative emotional reactions and resulting behaviors in the persons for whom you are caring and, you can understand better why the particular situation triggers a certain reaction, then when these situations occur again, you will know what to look for and how to respond and thus, can defuse or avoid certain negative reactions in the persons for whom you are caring 4. combining this understanding with monitoring your own behaviors and reactions to the persons for whom you are caring, gives you skills to reduce difficult interactions and distress in both o f you IV. Let us now turn to identifying situations in which people with dementia find themselves and that can lead to distress and behavioral reactions— what we often call problem behaviors A. Four primary types o f situations: (distribute H andout 1) 1. social situations • not being able to express verbally what they want to say or saying something different from what they intended to say • being asked to respond to several questions or statements at once • people talking about them as if they were not there, being ignored; being left out • being put down or scolded, confronted, contradicted • being left alone 2. too much going on so to be overwhelming; sensory overload: • loud, busy, crowded places • too much clutter, a lack o f routine • anything that requires too much thinking, organizing, or remembering 3. new situations or people: • situations which trigger fear o f failure, embarrassment, being lost, or a perceived threat to personal safety • situations which have no cues to anything familiar 4. complicated demands or activities that set them up to fail because they are unable to complete the task: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 4 3 • tasks not broken down into manageable steps • instructions unclear or too complicated • attention span too short for task • unstructured activities • activities that require new learning • activities that are perceived as too childlike, insulting • inability to perform what once was a simple task, e.g. buttoning clothes • pushed to do something that they are unable to do B. Perspective-taking 1. Imagine what it is like to be in these situations. Lets take one situation from each o f the four categories 2. How would you feel...? a. Social situations: frustrated, ashamed, hurt, insecure, rejected, afraid, lost; forgotten; may want to avoid situations in which expressions are demanded or requested b. Too much going on: frustrated, defensive, ashamed, angry c. New situations: worried, embarrassed, scared, helpless, frustrated, angry d. Complicated demands or activities: overwhelmed, useless, frustrated, helpless, angry 3. What would you want? How could someone help you? IV. Assign out-of-session practice A. First exercise: repeat the exercise that we just did. Choose several situations and try to imagine how you would feel in them. What would you want? How could someone help you? At our next session we will explore the connection between these types of situations and feelings to specific behaviors. D istribute H andout 2 to accom pany pra ctice exercise I B. Second exercise: read handout and complete exercise on what it feels like to be disoriented. D istribute H andout 3. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 4 4 Handout 1, Session 5 COMMON SITUATIONS IN WHICH PEOPLE WITH DEMENTIA FIND THEMSELVES WHICH CAN LEAD TO DISTRESS AND BEHAVIORAL REACTIONS 1. social situations • not being able to express verbally what they want to say or saying something different from what they intended to say • being asked to respond to several questions or statements at once • people talking about them as if they were not there, being ignored; being left out • being put down or scolded, confronted, contradicted • being left alone 2. too much going on such that it is overwhelming; sensory overload: • loud, busy, crowded places • too much clutter, lack o f a routine • anything that requires too much thinking, organizing, or remembering 3. new situations or people: • situations which trigger fear o f failure, embarrassment, being lost, or a perceived threat to personal safety • situations which have no cues to anything familiar 4. complicated demands or activities that set them up to fail because they are unable to complete the task: • tasks not broken down into manageable steps • instructions unclear or too complicated • attention span too short for task • unstructured activities • activities that require new learning • activities that are perceived as too childlike, insulting • inability to perform what once was a simple task, e.g. buttoning clothes • pushed to do something that they are unable to do Adapted from Gwyther, L. P. (1997) in cooperation with North Carolina Department of Human Resources Division of Aging. “Home is where I remember things”: A curriculum for home and community Alzheimer’s care. Raleigh, NC: North Carolina Department of Human Resources Division of Aging Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 245 Handout 2, Session 5 Certain kinds of situations determine, in part, emotional reactions in the person for whom you are caring (and yourself.)- Here are some examples: 1. FEAR a. feeling that you experience when you perceive a dangerous or threatening situation and the inability to avoid that situation b. often you may experience fear even though you can not identify the source o f your fear; this kind o f fear is referred to as anxiety c. so anxiety is when you experience a pervasive state o f apprehension o f feeling o f unease but cannot identify the source of your uneasiness 2. JOY a. feeling that you experience when you achieve a desired goal b. the intensity o f joy experienced will depend on the importance o f the goal to you, the difficulty in attaining it, and the suddenness with which the goal was attained 3. ANGER a. feeling that you experience when you are blocked in your attempt to achieve a goal and the object or person who prevented you from reaching your goal is easily identifiable (not as likely to occur when a person can not identify the obstacle to goal) 4. PRIDE a. feeling that you experience when you perceive your accomplishments as being due to your own qualities or character; in other words, when you perceive yourself as good because your behavior meets your expectations Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 4 6 5. SHAME a. a feeling you experience when you perceive your lack of accomplishments as due to a fault in your basic qualities, i.e. when you perceive yourself as bad because you fail to live up to own expectations and perception o f self 6. GUHLT a. feeling you experience when you perceive your behavior as wrong or immoral b. guilt differs from shame in that guilt can be experienced as a result of wrongdoing connected with a specific act and not necessarily related to one’s perception of oneself as a bad person c. perceive behavior as bad vs. perceive self as bad 7. JEALOUSY a. a feeling that you experience when you perceive a loved one giving affection to someone else; a feeling that is directed at another and is associated with you relationship with others Adapted from Bullmer, K. (1975). The art of empathy: A manual for improving accuracy of interpersonal perception. New York: Human Sciences Press Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 4 7 Handout 3, Session 5 What is it like to have Alzheimer’s disease (a n d other types o f dem entia)! What is it like to be unsure o f one’s surroundings, to have difficulty communicating, to not recognize a once-familiar face, or to be unable to do things that one has always enjoyed? Having dementia might be similar to taking a long trip in a foreign countiy. You experience the following things: The language is puzzling. Customs are different. You can not figure out how the pay phone works. Ordering food in a restaurant is difficult. When paying the restaurant bill with unfamiliar currency, you fear being shortchanged or cheated. Tasks so easy at home are major challenges in this unfamiliar setting. People with dementia are in a foreign land all the time. They experiences culture shock in their own backyard. They experience an array o f emotions. These emotions include loss, isolation and loneliness, worry and anxiety, frustration, fear, paranoia, anger, embarrassment, sadness or depression. These emotions often are associated with specific situations. In order to get a better sense how situations are linked to these emotions, it can be useful to try to imagine what it must be like to experience some o f the situations that people with dementia experience—essentially you are trying to “Put yourself in their shoes” or “See the world through their glasses”. I have adapted the following vignettes from Bell & Troxel, (1997) which are written from the caregiver’s perspective. The situations are groups by the feelings with which they are often associated. LOSS We often define ourselves in large part by our social and work roles, our relationships, or the things that we do. For example, you might say “ I am proud to be a good carpenter” or “ I am Sharon’s mother/father^’ or “I can sing well” . If we had to make a major change in life and these roles and activities were taken from us, we would feel great loss. How would you define yourself? What would give you meaning? Imagine the prospect o f progressive loss o f all roles. People with dementia lose these important and meaningful roles. Eventually they will be unable to work and will have to give up favorite activities such as driving a car or preparing a meal, both symbols o f independence. ISOLATION AND LONELINESS Imagine that you broke your leg in a car accident and had to stop most o f your activities for a month. You could not go to the office or to church, could not go for walks around the block, had to give up your Dodgers tickets, and had to cancel get-togethers with friends. You become very lonely during your recuperation. Your first day with your cast off is one o f the happiest days of your life. Imagine the isolation and loneliness you would feel if you did not have a chance at recuperation and recovery. People with dementia can no longer drive, may no longer be able to play their weekly bridge game, go bowling with friends, do woodworking, go shopping, or even walk down to the neighborhood donut shop. They lose social contact and friends may eventually stop visiting them. Moving Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 4 8 away from a hometown to be closer to family members can further isolate the person from longtime friends. Unlike a broken leg, their memory can not be mended. In addition, the many daily tasks faced by you, the caregiver, such as personal care, housekeeping, bill paying, and other chores may shorten time that you can spend just being with the person. One woman with dementia describes feeling left out o f activities. She said, “ I used to play cards, I used to drive, I used to work.. .there are too many ‘used tos’ in my life now.” CONFUSION We all have had times o f confusion. Perhaps an always-dependable friend does not show up for a lunch date. You probably begin to wonder, “Did I go to the wrong restaurant? Did I get the time or date mixed up? Did I imagine it?” Imagine what it would be like to feel this confusion every day, even every hour. The person with dementia is never quite sure about anything—the time of day, the place, the people around him or her. One man with dementia was at home watching the Winter Olympics on television when he become confused. Just as he observed a high-speed toboggan cross the finish line, his wife walked in front o f the television. He gasped and exclaimed, “You, you drove that contraption?” When his wife looked puzzled, he insisted, “You just arrived in that thing, didn’t you?” WORRY AND ANXIETY We all worry sometimes. You may worry about your children or grandchild doing well in school or being safe when they go out at night; you may worry about your health or not having enough money to pay the bills at the end of the month. You may even experience free-floating anxiety, where you can not quite pin down its source but you just feel anxious. Imagine your state o f being if you were worried all the time. The person with dementia can become consumed by worry and anxiety. Often the person can not separate a small worry from an all-consuming worry. One woman with Alzheimer’s disease alludes to worries about what lay ahead. Referring to a book on Alzheimer’s disease, she said “I know what happens. I’ve read the end of The 36-Hour Day. I’m a nurse, you know” FEAR We all have experienced fear. Think of a time that lead to fear. One example is searching for your car on a deserted street, late at night, not sure of the exact location. What if the car has been stolen. Your fear and panic grows. You think you hear footsteps. Are they real or imagined? You begin to fear for your personal safety. People with dementia may live in fear that is real or imagined. Common fearful thoughts include “Someone has taken Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 4 9 my money”, or, at the Day Center, “Will my daughter pick me up today?”. They may feel fear about the future, the loss o f independence, or the guilt that they are placing too much burden on family members. Sometimes fear can be caused by the fact that dementia affects perception. These perceptions may cause, for example, a fear o f falling because the carpeting on the floor has a confusing or misleading pattern. Sometime fear can be due to fading memory and the feet that the person does not recognize someone and thinks that a stranger has somehow gotten into the house. PARANOIA Many o f us have known moments o f paranoia. If a boss or a friend has been treating you differently in the last few weeks, you may wonder if s/he is unhappy with you, if you did something wrong. If you have not received any mail for several days in a row you may begin to wonder if the post office is losing it or someone is taking it. Imagine what it would be like to be suspicious of most things in your life. People with dementia often look for an explanation about what is happening to them. Why does their family refuse to let them drive? Where is their money? If they cannot find rational explanations, they might imagine that someone is trying to harm or hurt them in some way. FRUSTRATION We all know the frustration o f misplacing our keys or our wallet Misplacing our keys makes us late for an appointment, unable to get into the house or the office. We know that they are around but we cannot find them. Misplacing our wallet is frightening and we may begin to wonder if it was stolen. Imagine the frustration o f losing your keys or wallet every day, every hour. The person with dementia may constantly be looking for something he or she is certain is misplaced or lost. Frustration may come from failing to complete what once were simple, everyday tasks. For example, a woman with dementia may stare at a pile o f clothes that have been laid out for her: hose, underwear, slip, blouse, skirt, sweater, shoes, jewelry. “What goes on first?”, she wonders. What may have been so simple once is actually a complex series o f steps performed in a certain sequence: put on hose before shoes, the bra before the blouse. Yet because of a lost ability to follow steps and sequence things, even the act o f dressing can lead to frustration. One man with Alzheimer’s disease summed up his frustration with Alzheimer’s disease when he said “It is like my head is a big knob turned off.” ANGER Most o f us get angry at times. We may fly off the handle at the slightest provocation or we may get angry only when pushed to the limits o f our patience. Some o f us may never express our anger even if we should. You may show your anger by yelling at others or retreating within yourself. Often, when expressed properly, anger can be constructive. It Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 5 0 can help you fight a battle when you are threatened; it can help release harmful stress and emotion or even heal relationships once you have gotten something off your chest. Just like you, people with dementia also show anger. Often their anger comes from not understanding what is happening around them and to them. These reactions can begin with frustration and then can turn to anger if left unchecked. Often, anger can be directed at you. EMBARRASSMENT All o f us can remember a time when we were embarrassed. Think about a situation, what happened and how you felt. Did you collar tighten, your voice falter, your palms sweat, and your face blush? One common example that occurred to most o f us when we were kids was being called on in school and not having the answer to the question. Having dementia is like being in a giant classroom every day, one in which you never know the exact answer. One man with dementia often became embarrassed when he could not express himself well at the day center he attended. He often felt stupid, incompetent and ashamed. Adapted from Bell, V. & Troxel, D. (1997). The Best Friends approach to Alzheimer’s Care. Baltimore: Health Professions Press Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 251 Practice Exercises 2, Session 5 PRACTICE EXERCISES 1. Think o f a time when you were really lost. Perhaps you were on your way to a wedding in a strange city. Or maybe it was the first day on a new job. Remember how it felt—the feeling that you were just going around in circles, the mounting fear you were going to be late, the panic that you would never find your way. Recollect your memories o f such times. Imagine what it might be like to be a individual who is demented and disoriented and wandering and who believes it is important to get somewhere. What does it feel like to be disoriented? • Think o f a personal example o f disorientation, e.g. waking up in a strange place, losing your car in a mall parking lot, or the effects o f surgical anesthesia on you sense o f time • List the feelings these experiences aroused in you • Discuss how feelings of disorientation may affect the person for whom you are caring? 2. Now repeat the same exercise with an actual situation that happened to the person for whom you are caring. You will want to identify the situation. Imagine what it must be like to experience that situation. Try to identify the connection to the behaviors and feelings that the person for whom you are caring may have showed or experienced. Adapted from Hoffman, B. and Platt, C. A. (1991). Comforting the confused: Strategies for managing dementia. New York: Springer Publishing Company. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 5 2 Session 6: Pulling it together: Preparing to communicate your new understanding I. Check in with current caregiving situation II. Review o f out-of-session practice exercises A. Exercise 1: Imagine what it is like to be in these situations 1. How would you feel...? (examples) (a) Social situations: frustrated, ashamed, hurt, insecure, rejected, afraid, lost; forgotten; may want to avoid situations in which expressions are demanded or requested (b) Too much going on: frustrated, defensive, ashamed, angry (c) New situations: worried, embarrassed, scared, helpless, frustrated, angry (d) Complicated demands or activities: overwhelmed, useless, frustrated, helpless, angry 2. What would you want? How could someone help you? (examples) B. Exercise 2: what does it feel like to be disoriented? C. Reminder o f the objective of these exercises. The purpose o f these exercises was to practice taking the perspective o f the persons for whom you are caring; taking their perspective increases understanding o f their behaviors and how to respond to them 1. in these situations (refer to handout), think about the persons for whom you are caring, how they react to these situations and how they might be feeling 2. you may use yourself as a guide to try to understand how the person may be feeling but remember that the perspective that you want to take is that o f the persons for whom you are caring. Not yours. (a) you want to try to understand the perspective o f the persons for whom you are caring: to see their world as if you were inside it. To see with their eyes what their world is like to them and how they sees themselves. Understanding the persons’ experience is the starting point for responding to them (b) this type of perspective-taking is essential for being able to respond to the persons for whom you are caring appropriately and to reduce their distress Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 25 3 and problem behaviors. This also will make you feel better and help you maintain positive interactions with the persons for whom you are caring 3. it may be difficult to understand clearly the point o f view o f the persons for whom you are caring until you have tried to put aside your own biases, attitudes and beliefs about them. Putting aside your beliefs about them requires that you be as accepting and non-judgmental as possible. This is a hard thing to do and takes much time and practice; but it can be done. Part of what helps to suspend judgment is to have information about possible causes of their behavior. T T T Link between situations, emotions and behaviors: Pulling it all together A. Over the last two sessions we have learned how to identify the feelings and needs o f the persons for whom you are caring by paying attention to their facial expressions and eye contact, body language, ways in which they talk and the situations in which they find themselves 1. we have spent time learning this information so that you will be able to understand better the persons for whom you are caring, in particular, the situations that can make them upset and why, and what they tend to do when they are upset and how they express their feelings 2. with your knowledge and new skills, you will be better able to figure out what to do for them to address their feelings and behavioral reactions and thereby, reduce negative interactions between the two o f you that can result from misperceptions, misunderstanding and inaccurate responding 3. your knowledge and skills will also help you feel better and be less stressed out so that ultimately, you and the persons for whom you are caring can have more enjoyable times together and spend less time arguing and misunderstanding one another B. Lets go over some specific examples ( < distribute H andout) 1. lets examine the association between a situation, feeling and specific disrupting or distressing behavior using just one o f the behaviors listed in the handout 2. {refer to one type o f behavior) given this association between the underlying need or feeling and the behavior, what might be an appropriate response? (a) a word o f caution: appropriate responding can be more difficult than it appears for the following reasons: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 254 1. it requires that you have accurately perceived what is going on with the persons for whom you are caring; that you have paid close attention to and listened carefully to what they have to say; that is, their verbal and nonverbal messages and, 2. that you are aware o f what is happening to you, e.g. what emotions you are feeling, what thoughts you are experiencing, what judgments you are making (b) with practice, responding will get easier. When these behaviors occur in the persons for whom you are caring, practice giving the suggested responses and see what happens 3. try this same exercise on your own with other behaviors listed in the handout C. Lets talk next about attending to and listening to the verbal and nonverbal messages o f the persons for whom you are caring 1. attending and listening means that you are fully present for the persons for whom you are caring; you are fully present through what you say and what you do, meaning that you are aware o f your thoughts and emotional reactions and how they may interfere with your ability to listen to and attend to the persons for whom you are caring (this is another reason why monitoring yourself is important) 2. for example, your body language, facial expressions, eye contact, tone of voice, all send cues and messages about how you are feeling; they may communicate that you are frustrated, uninterested, exasperated, etc. They also may make it hard to truly listen to and attend to the persons for whom you are caring 3. it is very important that you are aware of the cues and messages you are sending because the persons for whom you are caring can easily read your cues and react to them 4. thus, monitoring the cues you are sending and your ability to listen to and attend to the persons for whom you are caring will give you some control over the way in which the persons for whom you are caring will react to you; and thus, control over the type o f interaction that you have with the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 255 5. the main idea here, which we will cover more at our next session, is that good attending and listening will assist you in maintaining positive interactions and reducing negative interactions with the persons for whom you are caring (a) this is because the person will be aware that you want to understand (b) we will focus next on how to create positive contact and caring with the person through your body cues 6. up until this point, our goal has been to increase your understanding o f the experiences, behaviors and feelings of the persons for whom you are caring. In the remainder of the sessions we will talk about communicating your understanding to that person IV. Assign out-of-session practice Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 5 6 Handout, Session 6 “PROBLEM BEHAVIORS”: THEIR EMOTIONAL AND SITUATIONAL DETERMINANTS, AND WAYS TO RESPOND REPETITIVE BEHAVIORS A N D Q UESTIONS Repetitive behaviors, which include doing/undoing, pacing, wringing hands, moving the same objects around repeatedly, can occur when people with dementia: • experience changes in their routine, or meet new people • misunderstand or misinterpret what is going on • are unable to sort out cues in the environment Repetitive questions can occur when people with dementia: • do not remember how often they asked the same question and/or • worry about forgetting something important Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing repetitive behaviors and questions include: => respond to their feelings, not just what they are doing or saying, e.g. “ you seem worried” => allow them to go through things if it is not harmful because it may be reassuring to them to make sure that their stuff is the same as they remember and is safe => provide reassurance by repeating calm, simple, patient answers to their questions______________________________________________________ C O N F A B U LA T IO N (M AKIN G UP THINGS) Confabulation occurs when the person with dementia fills in memory gaps with something that makes sense to them Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing confabulation include: = > reassure them that they will be safe and that you will help them figure out what has happened = > try not to argue with them, give lengthy explanations, confront or accuse them = > try to monitor your own reactions: remember that they are not lying or making up stories to make you or others look bad____________________________ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 257 A N G R Y AN D HOSTILE BEHAVIOR. C O M BAT IV EN E SS OR A G ITA TIO N Angry outbursts, combativeness, agitation, hostility or irritability can occur when people with dementia: • are unable to express or describe what they are feeling • are asked too many questions at once and can not follow them all • are feeling crowded, rushed, or are confused by unexpected happenings • have new demands placed on them • feel pushed to do something that they simply can not do • misunderstand or misinterpret what is going on • are frustrated at not being able to do something simple and at their own disabilities • are physically uncomfortable, e.g. tired, in pain • do not understand what is going on around them • often angry outbursts or overreactions to minor frustrations are a sign that the person is feeling a loss of control over his/her life Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing angry outbursts include: => calmly acknowledge their feelings and reassure them that you understand that they are upset => even if you do not understand what is being said or why the person is angry, acknowledging their feelings will reduce their agitation; if you know the source of the anger or agitation, reassure them that you will take care of the problem => apologize if appropriate; say “ please” and “ thank you” => point out their strengths; communicate that they are still valued and appreciated => stay calm, use soothing, slow, gentle movements, or hold their hand. Remember that your attitude and approach can calm them down or add to their agitation! => reduce confusion by reducing the amount of stimulation, either by reducing the source of noise or clutter or by moving them to an uncluttered, quiet place. However, try not to rush off; this may only heighten their anxiety and it indicates to them that you may not care about their problem => remove pressure by limiting choices, demands, and directions but allow the person to be as independent as possible => involve the person in productive and purposeful activities; they will reduce tension and increase the individuals’ sense of self-worth and self-esteem (but make sure you give the person a task that can be successfully accomplished!)_________________________________________________ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 258 => maintain consistency and routine as often as possible in order to reduce confusion => try to avoid arguing or reasoning with them, restraining them or fighting back. Remember when emotions overwhelm us we just react and logic goes out window: the same is true for person for whom you are caring! => try to remember that most often if is NOT a personal attack on you but rather the result of a frustrating event or situation and diminishing abilities => when directed at you, it may be the result of a misunderstanding or a misperception of cues; it is likely that they are experiencing difficulty putting the pieces together of what is being expressed, and thus can misinterpret what is said IN A P P R O P R IA TE SOCIAL BEHAVIOR: RUDE OR TACTLESS COMMENTS. POOR M ANNERS. SCREAMING. CURSING Inappropriate social behavior can occur when people with dementia: • lack inhibition and control of impulses • loose their memory of what is acceptable • are unable to understand how their rude behavior affects others • show poor judgment Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing inappropriate social behavior include: => watch your reaction and behavior: try to stay calm, matter-of-fact and not overreact => tell them what they do that you like: u l like when you talk gently to me” => reduce excess confusion, stress, and discomfort______________________ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 5 9 SUSPICIOUSNESS. PA R A N O IA AND DELUSIONS Both suspiciousness and delusions, which are false beliefs originating in a misinterpretation of a situation, can occur when people with dementia: • are not able to make sense of what they see or hear. They become suspicious of their world when they can not get all the information that they need to make sense of situations • realize that they are making mistakes and thus, they may develop the belief that they can not trust that others will not make mistakes also • are afraid because they hear unusual noises and do not know what the noises are • are upset because they can not remember where they put things or that they gave away a particular item a long time ago • delusions, or false ideas that get stuck in their head, may occur because of the person’s inability to make sense of reality compounded by a poor memory • when they say “ stole” , it may be their way of expressing the many losses they have experienced Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing suspiciousness include: => listen to them and let them know that you care what they think so that they do not feel that they are being minimized, discarded, or belittled => tell them that you know that they are afraid or mistrustful and you will help them look into it (or look for the thing that they think was stolen) => watch your own reaction: Remain calm and interested; try not to become offended or defensive. Instead, say something like, “ I understand. You will be safe with me.” => reduce fear by explaining the source of unusual noises => try to get beyond the words themselves and to the feelings they might be attempting to express; e.g. “ It must be hard not to be driving yourself places any more. We're happy to see that you get where you need to go.” ________ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 6 0 P R O B LE M S WITH RECO GNITIO N AN D MISIDENTIFICA TION Problems with recognition and misidentification can occur when people with dementia: • forget how they are related to other people—such as thinking that wives are their sisters or mothers • forget what an object is used for Misidentification may be related to: • hallucinations, or false perceptions of objects or events, that are sensory in nature; that is, they see, hear, smell, taste or even feel something that is not there. Hallucinations may occur as a direct result of lighting and/or glare off objects; misinterpreting wall fixtures, voices over the radio or on the television, etc. Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing problems with recognition and misidentification include: => reassure them by giving them a brief explanation, e.g. “ I know I look like your sister” => gently offer correct information as a suggestion, e.g. “ I think he is your son, John" => watch your reaction: Try not to take it personally and ask how he or she could forget you (despite how hard it may be to do so!) => in case of hallucinations, reassure the person with a gentle touch and kind words, e.g. “ Don't worry, I'm here. I'll protect you. I’ll take care of you.” or “I know you’re worried. Would you like me to hold your hand and walk with you for a while?” If they ask you about the hallucination, you may want to acknowledge that you believe that they see/hear/smell something even though you do not, e.g. “I know that you see something, but I don’t see it” . Remember that arguing with the person will only serve to heighten the person’s anxiety and upset you! => if the hallucination is very threatening and visibly upsetting such as “ There is a person trying to kill me” , you will want to provide accurate information and respond with something like “ There is no one here with a knife. I’m here and I love you. You are safe with me.” Then slowly move them away from the area and stay with them. => look for reasons or feelings behind the hallucination and try to find out what the hallucination means to the person________________________________ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 26 1 CLINGING AND S H A D O W IN G Clinging and shadowing, which include following, mimicking or interrupting the caregiver or talking to the caregiver constantly, can occur when people with dementia are: • around new people • experience changes in their routine • feel that they do not belong • do not trust themselves to be alone • feel fearful and insecure Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing clinging and shadowing include: => identify their fears and try to address the fears, e.g. u l won’ t leave you” => spend time with them; ask them to help you with something even if you could do it better on your own. Activities will help them feel useful and will occupy their time => give them something to make them feel secure while you are out of sight, e.g. make sounds while in the kitchen, give them something to hold, put a favorite videotape on to watch => help make the environment less scary: reduce noise, confusion, and clutter => watch your reaction and beliefs: Understand that the person is not trying to drive you crazy no matter how much it feels like it!_______________ HIDING THINGS. SEARCHING. R U M M A G IN G Hiding things, searching and rummaging occur when people with dementia are: • looking for something familiar • looking for something that they think is lost • feeling anxious and afraid due to an inability to remember things for more than a short time; they may be looking for something that they believe they should be able to find, perhaps an object from the distant past Fidgeting or moving things may be a way to handle excess energy Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing hiding things, searching and rummaging, include: => reduce distress and agitation by limiting possible hiding places and checking hiding places often => provide reassurance through familiar things by giving them “ safe” drawers or closets of stuff to look through, to handle or to move around => reassure the person that they are safe and that you are there to help => offer to help the person look________________________________ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 6 2 BATHING DIFFICUL TIES Difficulties with bathing may occur when people with dementia: • fear falling, drowning, getting hurt, or being naked • feel overwhelmed by the mechanics of bathing • feel embarrassed by needing help with something so simple and private • feel rushed or tired • fear being with a stranger in a private situation (if they do not recognize the caregiver) • are frustrated by their own disabilities • are uncomfortable by the temperature of the water anxious if it is too cold; fearful, if it is too hot Bathing difficulties can result in combativeness and/or agitation Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing bathing difficulties, include: = > keep a sweater or towel over the individual’s shoulders while other parts of the body are being bathed to maintain the person’s dignity => keep doors, windows, and blinds shut to respect the person’s privacy = > play soft music, sing songs to help the person relax => if the person is apprehensive, talk to them to determine why he/she may be anxious or fearful = > talk through the steps and calmly reassure the person that there is nothing to be afraid of = > if the person is apprehensive about getting into the bathtub or shower, try lightly splashing some water on his/her face and arms; this action indicates to the person that the water is a comfortable temperature = > reduce fear of falling by putting the proper safety devices in the bath area: hand rails on the wall; a rubber bath math on the floor of the tub = > if the person appears afraid of the direct spray from a shower, try using a hand held shower sprayer; this also can give the person more control______ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 26 3 DRESSING DIFFICULTIES Problems with getting dressed may occur when people with dementia: • do not remember what clothes are or how to get dressed • do not remember where clothes are kept or are overwhelmed by the amount of clothing in closets or drawers • are confused by the complicated steps involved in getting dressed • are troubled by a cold room, poor lighting, or loud noises • are embarrassed by dressing in front of others Some helpful ways of responding to people with dementia in terms of getting at their underlying feelings and needs, thereby reducing dressing difficulties, include: => close doors and windows to respect the person’s need for privacy and sense of dignity = > lay each article of clothing on the bed in sequence to help simplify the task = > minimize confusion by providing cues that assist the individual in identifying their dresser and closet such as an object shaped like a shirt on the drawer or closet = > minimize confusion by storing "out of season clothes” = > select clothing that minimizes the potential for frustration and maximizes comfort such as jogging suits, Velcro snaps, slip on shoes. => put out old clothing; old clothing that is familiar may help them feel more secure than new clothing => work with the person organizing outfits, folding clothes and putting them away; remain calm and patient and give praise and encouragement. Remember that “ doing with” is more beneficial to the person than is “ doing for” => If the person insists on wearing clothes that do not match, let him/her do so and try not to worry about it. Comfort and security are the goal.___________ Adapted from Gwytber, L. P. (1997). “Home is where I remember thinps” A c u rric u lu m for home and community Alzheimer care Raleigh, NC: North Carolina Department of Human Resources Division of Aging, and from Cairl, R. E. (1993). Somebody tell me who I am: R e sh ap in g thoughts about c a re an d m a n a g e m e n t of cnnfiiwt a n d memory impaired older adults. S t Petersburg, FL: Caremor Publications. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Practice Exercises, Session 6 PRACTICE EXERCISES 2 6 4 In this exercise you are asked to identify not only the feelings and emotions that are expressed by others or implied in what they say but also the relevant experiences and behaviors that give rise to the feelings. What experiences and what behaviors contribute to the way the people in the following vignettes are feeling? In come cases, the person’s experience might be the most relevant, in other cases his or her behavior may be the most relevant, and in some cases both may be important. Example A seventh-grade boy talking to a teacher he trusts (all this is said in a halting voice and he does not look at the teacher): “Something happened yesterday that’s bothering me a lot. I was looking out the window after school. It was late. I saw two o f the guys, the bullies, beating up one o f my best friends. I was afraid to go down...... A coward... .1 didn’t tell anyone, I did not do anything.” Feelings: ashamed, guilty, down, miserable Relevant experience/situation: watching a good friend get beat up Relevant behavior: failing to help his friend 1. A woman, 42, with two children, one eight, one ten, whose husband has deserted them talking to a social worker: “He’s not sending me any money. I don’t even know where he is. (She bows her head and rubs her hands on her temple.) They’re asking me for the rent and telling me that I’ll be out if I don’t come up with it. (Her voice quickens and raises in tone.) I’ve been to two different agencies and filled out all sorts of forms, but I don’t have any money or food stamps yet. I’ve been getting food from my mother, but she’s really got next to nothing (She shakes her head, slightly, back and forth). What am I supposed to do? I’ll work, but who’s to take care o f the kids.” Feelings:________________________________________________________________ Relevant experience/situation: Relevant behavior : 2. A man, S3, talking to a psychologist a few months after the sudden death o f his wife. His two children are married and living in distant towns: “I miss her so. The house seems so empty. (He stares blankly into space, slumped forward in his chair.) I work alone on computer programs. There’s no one I talk to at work. Now there’s no one at home. I walk around the house thinking o f how I was with her in each room. (He Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 6 5 pauses, taking a deep breath.) At night sometimes I sit in the dark thinking of nothing. We had few friends, so no one calls. And I haven’t seen either of the kids since the funeral. (He looks down at the floor.) Feelings:________________________________________________________________ Relevant experience/situation: Relevant behavior: 3. A man, 70, arrested for stealing funds from the company where he has worked for 25 years, talking to his lawyer: “To tell you the truth, it’s probably a good thing I’ve been caught. (He pauses, looking the lawyer in the eye.) I’ve been stealing on and off for the last five or six years. It’s been a game. It soaked up my energies, my attention, distracted me from thinking about getting old. New I’m saying to myself: ‘You old fool, what’re you running from?’ I’ve been forcing myself to try to make sense out of my life. You’re probably thinking: ‘It’s about time, old guy.’ I’m thinking it’s as good a time as any.” Feelings:________________________________________________________________ Relevant experience/situation: Relevant behavior: 4. A woman, 67, who has Alzheimer’s disease, is holding an unwrapped stick of butter in her fist. It is oozing between her fingers and out either end o f her grasp. She is clenching the butter and rubbing one end against a dry piece o f cold toast. Her daughter asks her to use a knife but, after she quickly scans the area and does not see one, she continues what she is doing. Her daughter asks her again to use a knife. The woman responds: “What else is wrong with me?’ What else would you like to correct? (Her voice grows louder and she talks more quickly.) What else do I do wrong? Oh, leave me alone.” (She slaps the stick o f butter against the counter and it stays there. She leaves the kitchen.) Feelings:________________________________________________________________ Relevant experience/situation: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Relevant behavior: 2 6 6 5. A woman, 50, trying to get her mother who has vascular dementia to take a shower before they go out to dinner. The mother states that she will take a shower but will not wash her hair. They get into an argument. The mother takes a very long shower but does not wash her hair. The daughter takes a shower and the water was ice cold. After getting out of the shower she checks in on her mother who is in the process of trying to set her dirty hair. The daughter says to her mother: “There was no hot water. Dammit. Did you have hot water?’ (She is pacing around the bathroom). (The mother replies, yes, she did.) “You did? You had hot water?” (Mother replies yes again.) “Are you sure?” (Mother says yes.) “Wait a minute, why the hell am I asking you? You don’t know what you’re talking about. You don’t know what day it is. What am I doing? Feelings:________________________________________________________________ Relevant experience/situation: Relevant behavior: 6. A man, 75, with Alzheimer’s disease entering a restaurant with his wife. He slams into every obstacle that he passed on the way to the booth. Once at the booth, he can not get his right foot on the platform and bend his body at the same time so that he could slide into his seat. After a number o f tries, he finally gets himself positioned so that his wife is able to push him onto his seat. People are staring and laughing. His face flushes and he scolds himself. He then tries to find his napkin to put on his lap but the table cloth and napkins are both a dark green. His poor vision, combined with the dimness o f the room, makes it impossible for him to find his own napkin. He reaches for the only white napkin in his range of view, grabs it and flicks it in order to put it on his lap. This particular napkin happens to be lining the bread baskets so the bread and rolls go flying, some of them bouncing off o f the brass rail next to the booth. He hangs his head. His wife cries. Feelings:________________________________________________________________ Relevant experience/situation: Relevant behavior: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 6 7 Now tty this same exercise with situations that happened to the person for whom you are caring. This time, also try to identify some o f your beliefs about the person for whom you are caring that may have influenced how you perceived what they felt. a. Situation 1: Feelings:_________________________________________________________________ Relevant experience/situation: Relevant behavior: What are some o f your beliefs about the person that may have influenced your perception of the situation and how they felt? b. Situation 2: Feelings:__________________ Relevant experience/situation: Relevant behavior: What were some o f your beliefs about the person that may have influenced your perception o f the situation and how they felt? Adapted from Egan, G. (1985). Exercises in helping skills: A training m anual to accompany The Skilled Helper (Third Edition). Monterey, CA: Brooks/Cole Publishing Company. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 6 8 Session 7: Communicating your new understanding I. Check in with current caregiving situation n. Review out-of-session practice A. Identify feelings and the relevant experiences/situations and behaviors that give rise to those feelings 1. for each example: What do you think the person needed or wanted? What might you do in response to these needs? (p ick non-caregiving exam ple to review) 2. R epeat the sam e w ith p erso n al caregiving exam ple B. Review o f exercise objective combined with more general review o f points from prior sessions: The point o f this exercise is to practice viewing the situation from the perspective o f the persons involved and to try to understand how they are feeling and what contributed to their feelings. This perspective will enable you to respond more appropriately to them 1. in the exercises, How did you try to identify the feelings o f the person involved? (a) G et answ ers. H ighlight perspective-taking. You may have tried to imagine what you would feel if you were in the same situation (b) that is, you may have tried to take the persons’ perspective by putting yourself in their shoes and seeing the world through their eyes (c) what kind o f effect does this have? It helps us perceive, more accurately, what another person is feeling and makes it easier to respond appropriately to him/her 2. How were people able to do this when the situation involved the persons for whom you are caring? (a) you may have found that it was difficult to take the perspective of the persons for whom you are caring which then makes it harder to respond to their needs (b) difficulty taking the perspective of the persons for whom you are caring can come about, in part, when your own attitudes and beliefs about them Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 269 negatively influence your perceptions o f their behavior and affects how you respond to them 1. when your beliefs about the causes o f the behavior o f the persons for whom you are caring are inaccurate, then so to may be your response (a) for example, you think the person for whom you are caring is not following directions just to annoy you or to be difficult and you may push him/her harder. Your pushing may make him/her more agitated and apparently uncooperative. However, the real reason that he/she is not doing what you ask is that he/she is confused and unable to follow your lengthy instructions (remember what we learned about situations that can be difficult for the persons for whom you are caring). You both end up being upset and angry and have a very negative interaction (b) in this example, an increased awareness of the situations and experiences that influence the person’s behavior and feelings, as well as your own expectations and beliefs about the person’s behavior, would have helped you respond to the person differently and could have lead to a more positive interaction 2. thus, an understanding of the situations and experiences of the persons for whom you are caring as well as your beliefs about the person, can help you gain control over the type o f interaction that you have with the person 3. you are learning how to identify those situations and beliefs; with practice, it will become easier to catch yourself evaluating the person, suspend those evaluations, pay close attention to what is happening for the person and respond in ways that are less distressing to you and to them III. Creating contact and caring A. We have discussed how to identify the feelings and needs o f the persons for whom you are caring (watching body language, facial expression, tone o f voice); how to understand their behavior and the feelings behind the behavior by paying attention to the situations in which they find themselves; how your beliefs about them can interfere with this understanding and how a better understanding o f them will help you both get along better Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 7 0 B. Now we will pull it together and talk about how to communicate your understanding and respond appropriately to the persons for whom you are caring 1. communication can be broken down into three major components (a) the first component is showing your interest and a good quality of presence with the persons for whom you are caring; the quality of your presence is important because, as we discussed, the persons for whom you are caring can easily read cues that indicate how you are feeling towards them (b) the second component is listening to what the persons for whom you are caring have to say (c) the third component is communicating your understanding o f what you have “heard” to the persons 2. we will discuss each of these components in more detail next C. We are always communicating cues or messages to people through our nonverbal behaviors. These cues indicate the quality o f our presence with them and how effective we can attend to them and their needs 1. one o f our goals for today is not only to help you become aware o f this fact but also to help you be in touch with and capable o f reading your own quality o f presence or attending behavior towards the persons for whom you are caring 2. the quality of your presence with the persons for whom you are caring will contribute to the quality of interaction between the two o f you (a) e.g. if you feel your muscles tensing as the person for whom you are caring talks, you can say to yourself “I’m getting anxious here.” “What’s causing my anxiety? What am I worried about? What am I thinking? What cues am I sending to the person that may show my anxiety? And how may these cues effect the person for whom I am caring and our interaction” (b) once you have identified what messages you may be sending to the person, you can use your body to communicate appropriate messages or even censor messages you feel are inappropriate 1. e.g. if the person for whom you are caring says something that triggers anger in you, you can control your expression o f anger (grimace, frown, clenched fists, raised voice) to give yourself time to think about what is happening and how else you may want to respond, e.g. maybe you are reading into what the person said or did or maybe you decide Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 71 that expressing anger will not be helpful—often it just makes you both more upset 2. thus, you avoid a negative confrontation with the persons for whom you are caring 3. this process o f understanding your own emotions and how you communicate them is difficult and takes time because it requires that you learn to be objective about yourself. However, with practice, you will learn and it will help you keep your relationship with the persons for whom you are caring more positive 4. now we will go over specific attending behaviors and what they communicate about your quality o f presence with the persons for whom you are caring IV. Quality o f your presence: also called attending behavior A. Attending behavior. D istribute H andout 1. M odel effective a n d ineffective a tten d in g behavior a s review handout. 1. eye contact (a) effective eye contact 1. involves looking directly at the person when listening or when speaking to him/her 2. communicates to the person: “I’m with you”, “I want to hear what you have to say” (b) ineffective eye contact: 1. involves not looking at the person, looking down or looking away frequently, staring at the person blankly or too intensely 2. communicates to the person: “I am not interested in what you have to say”, “ I am reluctant to be with you or to get involved with you right now” 2. body posture (a) effective body posture: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 7 2 1. involves: facing the person and leaning slightly forward towards him/her; being relaxed while focused on him/her; using gestures, e.g. hugging, touching on the arm or back 2. communicates to the person: “I’m available to you”, “I choose to be with you”, “I’m interested in you and in what you have to say” (b) ineffective body posture: 1. involves: sitting or standing sideways from the person; leaning too far back from the person or slouching; sitting or standing in a fixed, rigid or tense position, e.g. tense neck and shoulder muscles, clenched fists) 2. communicates to the person; “I’m not entirely with you”, “I’m bored with what you are saying”, “I am uncomfortable around you” or “I’m tense, angry, frustrated or stressed out” 3. You may want to try to ask yourself “To what degree does my posture communicate openness and availability to the person for whom I am caring?” 3. distracting personal habits or behaviors (a) involves: rummaging through things or looking for something while talking to the person: tapping your fingers or feet (b) communicates to the person: “I do not have time to listen to you”, “I am distracted and preoccupied with more important things”, “I would rather be somewhere else right now” 4. head and facial movements (a) effective head and facial movements 1. involve occasionally nodding your head to affirm that you hear what the person is saying; smiling when appropriate; using facial expressions that match the mood of person, e.g. if the person is upset, you want to be fairly serious 2. communicates to the person: “I am listening to you and am trying to understand what you are saying” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 273 (b) ineffective head and facial movements 1. involve constantly or very infrequently nodding your head to affirm that you hear what the person is saying; holding your head down; constantly or rarely smiling; frowning; looking at the person with a cold, distant, tense or worried expression or no expression at all (rigid face); being overly emotional 2. communicates to the person: “ I disapprove o f what you say”, “ I am not interested in what you have to say” , “I am not following what you are saying” or “I can not tolerate hearing what you are saying or how you are feeling” S. speech (a) effective speech 1. involves using a natural conversational style and a pleasant, interested tone; using simple, precise language; speaking at a moderate rate and at an appropriate degree of loudness; using a feeling tone similar to that communicated by the person 2. communicates to the person; “I am interested in you and in what you have to say”, “I feel calm and safe and secure being with you” (b) ineffective speech: 1. involves speaking in a monotone; speaking too loudly or too softly; speaking too quickly, too slowly or too choppy; sounding overly enthusiastic (too much emotion); using too many disruptions, e.g., lengthy pauses or fillers, e.g. “you know’ “um” or “ah” 2. communicates to the person: “I am anxious or uncomfortable around you”, “I can not follow what you are saying” or “I do not know what to say to you” V. Listening to the persons for whom you are caring A. We have been discussing your attending behavior—how you communicate your interest and quality of your presence with the persons for whom you are caring 1. attending is related to listening, the next step in building communication and a better understanding of the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 7 4 2. good attending will help you perceive and hear what the persons for whom you are caring are saying both verbally and non-verbally. Good attending helps you: (a) be better able to figure out what the persons need (b) be better able to respond to their needs and reduce problem behaviors which will, in turn, help you both be less distressed B. Effective listening involves three things: 1. one component is listening to and understanding the persons’ verbal messages- -the thoughts and/or feelings being said (a) listening to the words is easier when the persons do not have much difficulty communicating verbally (b) if the persons are having difficulty expressing themselves clearly, you will need to listen to the “gist” of the message, because the actual words that are coming out may be confusing (c) listening to the “gist” means focusing on the thought or feeling that the persons are trying to express, using what you know about the situation in which they find themselves and how it can contribute to their feelings and behaviors 2. a second component to effective listening is observing and reading the persons’ nonverbal behavior: how it is being said (a) their posture, body movements, gestures, facial expression (frowns, smiles, raised eyebrows), observable physiological reactions (such as quickened breathing, blushing, paleness, pupil dilation), manner o f speaking (tone of voice, loudness, intensity, inflection, emphases, pauses, silences) and their general appearance 3. a third component involves paying attention to the context or situations involved (a) nonverbal behavior can mean a number of things. So how then do you know which explanation is accurate so you can respond appropriately to the behavior? The key is the situation in which the persons for whom you Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 275 are caring are in (R eturn to handout on situ a tio n s a n d th is se ssio n ’ s p ra ctice exercises) 1. experiences: what is happening or has happened to them 2. behavior: what they did or failed to do 3. what feelings they have because o f what happened to them or what they did C. Although I just listed ways to be an effective listener, being a good listener is not as easy as it appears 1. there are several things that you may do that will influence your ability to listen well to the persons for whom you are caring 2. these things include: being distracted, evaluating what the persons are saying and doing, and filtering what you hear 3. we will go over some specific examples now D. Common pitfalls to being a good listener (D istribute H andout 2) 1. inadequate listening: ways in which you are distracted from listening • you are preoccupied by your own needs and concerns • you are so eager to respond that you become preoccupied with what you are going to say in response to the person and miss what the person is saying • you pay more attention to what you are feeling about the person than to what the person is saying • you are tired, feeling sick etc. and tune out what the person is saying 2. evaluative listening: ways in which you judge what the person is doing or saying • you judge what the other person is saying (or doing) in terms o f good/bad, right/wrong, acceptable/unacceptable, like/dislike, relevant/irrelevant, etc. • you make similar judgments about the person himselfrherself 3. filtered listening: ways in which you screen or filter what you hear; filters help organize what you hear but they also may distort your listening • you use theories about the person’s character or personality to try to understand what he/she does and says Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 7 6 • you have a belief that dementia is the only cause o f what the person does and says or a belief that dementia is unrelated to the cause o f what the person does or says E. These pitfalls in listening can make it harder to identify and respond to the feelings and needs of the persons for whom you are caring and can contribute to misunderstandings and negative interactions between the two o f you F. Thus, when you are listening to the persons for whom you are caring, you want to focus on understanding rather than evaluating; with the goal o f understanding the experiences, behaviors and feelings o f the persons for whom you are caring as they experience them—from their perspective. Listening is related to good attending behavior G. Now we will talk about communicating your understanding to that person. We will cover specific communication strategies at our next session. However, today we will introduce some general guidelines for communicating with the persons for whom you are caring. VII. Verbally communicating your understanding: Some general guidelines A. Need to acknowledge right from the start that communicating with a person with dementia is different from communicating with a non-demented person 1. in most of our interactions with people, both o f the people involved take some responsibility for maintaining communication, e.g. we clarify what we mean, express our point o f view, ask questions or provide information 2. however, when communicating with the persons for whom you are caring, the responsibility for maintaining and nurturing communication rests with you (a) this fact is hard to accept (b) however, you will find that once you can accept the responsibility, your interactions with the persons for whom you are caring will go more smoothly and you will enjoy the persons more (c) what will help you enormously is accepting the persons as they are now— their existing strengths and weaknesses. This acceptance means: 1. not expecting more than they are capable o f doing or pushing them beyond their limitations Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 7 7 2. not expecting too little from them and doing everything for them B. Setting the stage (D istribute H andout 3) 1. if you can, take care of any sensory deficits, e.g. poor hearing or limited vision 2. eliminate background noise, e.g. turning down or turning off the TV and radio 3. eliminate distractions, e.g. choose quiet room where there will not be many interruptions 4. be sure that you have the person’s attention before you begin to speak, e.g. say his/her name or touch him/her gently on the arm; do not call from other room or interrupt when involved in another task; approach from the front 5. establish good attending behavior: good quality of presence; this includes looking at the persons so that they can read your facial expression and body language C. Showing your caring and understanding 1. be patient, it may take the person a while to respond to you 2. be generous with your approval and use calm, positive phrases: it is you, not the persons for whom you are caring, that set the standard for “good enough” performance; this notion applies just as much to the person’s communication attempts as it does to how well he shaves himself or how well she gets dressed 3. be sensitive: if you have understood the message, let verbal mistakes go rather than challenging or correcting them (a) letting the persons for whom you are caring hide their verbal slips allows them to save face, unless they are clearly distressed by their mistakes, in which case you can offer gentle reassurance and help them make themselves understood 4. watch your body language and tone o f voice (a) listen to how you sound in conversation with the persons for whom you are caring; how you sound will influence how they respond to you (b) a calm, relaxed speaking style will allow the persons to focus on your conversation without anxiety that you may be angry or upset with them Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 7 8 5. watch the persons for whom you are caring for signs o f communication difficulty or circumstances triggering communication breakdowns (Use your objective observation skills) (a) look for signs o f fatigue and overstimulation; these can contribute to communication breakdowns (b) look for distractions in the environment; communication may be more difficult when you have a house hill o f guests or other distractions in the environment (c) look for signs that the persons did not understand what you were asking them to do (d) look for indications o f degree of awareness o f communication difficulties (e) ask yourself what adjustments on your part seem to improve communication (e.g. speaking more slowly, giving one-step requests or directions, using simple, direct statements?) (f) try not to pretend to understand them if you do not. Ask for help. “Is this what you mean? Am I on the right track?”. Ask them to show you what they want 6. as you become more aware of factors that help or hinder communication with the persons for whom you are caring, you will be better able to plan ahead to anticipate potential difficulties, making it easier on the two o f you YU. Assign out-of-session practice Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 7 9 Handout 1, Session 7 KEY COMPONENTS OF QUALITY OF PRESENCE OR ATTENDING BEHAVIOR E Y E C O N TAC T Effective Eve Contact: • looking directly at the person when listening or when speaking to him/her What Effective Eve Contact Communicates To The Person: “I’m with you”, “I want to hear what you have to say” Ineffective Eve Contact: • not looking at the person, looking down or looking away frequently • staring at the person blankly or too intensely What Ineffective Eve Contact Communicates To The Person: “I am not interested in what you have to say”, “ I am reluctant to be with you or to get involved with you right now” B O D YP O STU R E Effective Body Posture: • facing the person and leaning slightly forward towards them • being relaxed while focused on them • using gestures, e.g. hugging them, touching them on the arm or back What Effective Body Posture Communicates To The Person: “I’m available to you”, “I choose to be with you”, “I’m interested in you and in what you have to say” Ineffective Body Posture: • sitting or standing sideways from the person • leaning too far back from the person or slouching • sitting or standing in a fixed, rigid or tense position, e.g. tense neck and shoulder muscles, clenched fists) What Ineffective Body Posture Communicates To The Person: “I’m not entirely with you”, “I’m bored with what you are saying”, “I am uncomfortable around you” or “I’m tense, angry, frustrated or stressed out” You may want to try to ask yourself “To what degree does my posture communicate openness and availability to the person for whom I am caring?” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 8 0 D ISTRACTIN G PERSONAL H ABITS OR BEHA VIORS: e.g., rum m aging through things o r lo o kin g fo r som ething w hile ta lking to the person, tapping yo u r fin g e rs or fe e t What Distracting Personal Habits Communicates To The Person: “I do not have time to listen to you”, “I am distracted and preoccupied with more important things”, “I would rather be somewhere else right now” HEAD AND FACIAL M O VEM ENTS Effective Head and Facial Movements: • occasionally nodding your head to affirm that you hear what the person is saying • smiling when appropriate • using facial expressions that match the mood of person, e.g. if the person is upset, you want to be fairly serious What Effective Head And Facial Movements Communicate To The Person: “I am listening to you and am trying to understand what you are saying” Ineffective Head and Facial Movements: • constantly or very infrequently nodding your head to affirm that you hear what the person is saying • holding your head down • constantly or rarely smiling • frowning • looking at the person with a cold, distant expression or no expression at all (rigid face) • being overly emotional What Ineffective Head And Facial Movements Communicate To The Person: “ I disapprove o f what you say”, “ I am not interested in what you have to say” , “I am not following what you are saying” or “I can not tolerate hearing what you are saying or how you are feeling” SPEECH Effective Speech: • using a natural conversational style and a pleasant, interested tone • using simple, precise language • speaking at a moderate rate and at an appropriate degree o f loudness • using a feeling tone similar to that communicated by the person Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 81 What Effective Speech Communicates To The Person: “I am interested in you and in what you have to say”, “I feel calm and safe and secure being with you” Ineffective Speech: • speaking in a monotone • speaking too loudly or too softly • speaking too quickly, too slowly or too choppy • sounding overly enthusiastic (too much emotion) • using too many disruptions, e.g., lengthy pauses or fillers, e.g. “you know’ u a l » urn , an What Ineffective Speech Communicates To The Person: “I am anxious or uncomfortable around you”, “I can not follow what you are saying” or “I do not know what to say to you” Adapted from Egan, G. (1985). Exercises in h elp in g skills- A tra in in g m a n u a l tn a ^ omnanv T h e Skilled Helper (Third Edition). Monterey, CA: Brooks/Cole Publishing Company and from Danish, S., D’Augelli, & Hauer, A. (1980). Helping skills: A basic training program (Second Edition). New York: Behavioral Publications. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 8 2 Handout 2, Session 7 COMMON PITFALLS IN BEING A GOOD LISTENER: It Is Not As Easy As It Sounds INADEQUATE LISTENING: Wavs In Which You Are Distracted From Listening • you are preoccupied with your own needs and concerns • you are so eager to respond that you become preoccupied with what you are going to say in response to the person and miss what the person is saying • you pay more attention to what you are feeling about the person than to what the person is saying • you are tired, feeling sick etc. and tune out what the person is saying EVALUATIVE LISTENING: Ways In Which You Judge What The Person Is Doing Or Saving • you judge what the other person is saying (OR DOING) in terms of good/bad, right/wrong, acceptable/unacceptable, like/dislike, relevant/irrelevant, etc.; • you make similar judgments about the person himselfTherself FILTERED LISTENING: Ways In Which You Screen Or Filter What You Hear (filters help organize what you hear but they also may distort your listening) • you use theories about the person’s character or personality to try to understand what they do • you have a belief that dementia is the only cause o f what the person does and says or a belief that dementia is unrelated to the cause o f what the person does or says Adapted from Egan, G. (198S). Exercises in helping skills: A training m a n ual to accompany T h e S k ille d Helper (Third Edition). Monterey, CA: Brooks/Cole Publishing Company. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 8 3 Handout 3, Session 7 SOME GENERAL GUIDELINES FOR COMMUNICATING YOUR UNDERSTANDING TO THE PERSON FOR WHOM YOU ARE CARING S ettin g The Stage • if you can, take care o f any sensory deficits, e.g. poor hearing or limited vision • eliminate background noise, e.g. turning down or turning off the TV and radio • eliminate distractions, e.g. choose a quiet room where there will not be many interruptions • be sure that you have the person’s attention before you begin to speak => approach him/her from the front and say his/her name or touch him/her gently on the arm => avoid calling from another room or interrupting him/her when he/she is involved in a task • establish good attending behavior— good quality of presence— particularly making sure to look at the person so that he/she can read your facial expression and body language Show ing Your C aring A n d U nderstanding • be patient, it may take the person a while to respond to you • be generous with your approval and use calm, positive phrases => remember that it is you, not the person for whom you are caring, that sets the standard for “good enough” performance; this notion applies just as much to communication attempts as it does to how well he shaves himself or how well she gets dressed • be sensitive: => if you have understood the message, let verbal mistakes go rather than correct them => let the person hide his/her verbal mistakes; this allows him/her to save face, unless she/he is clearly distressed by the mistake, in which case you can offer gentle reassurance and help him/her make himself/herself understood • watch your body language and tone o f voice Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 284 • listen to how you sound in conversation with the person for whom you are caring; how you sound will influence how he/she responds to you = > a calm, relaxed speaking style will allow the person to focus on your conversation without anxiety that you may be angry or upset with him/her => pay attention to how you appear to them • try not to pretend to understand the person if you do not. Ask for help. “Is this what you mean? Am I on the right track?”. Ask him or her to show you what they want • watch for signs o f communication difficulty or circumstances triggering communication breakdowns (Use your objective observation skills) => is the person showing signs o f fatigue and overstimulation when communication breaks down? => is communication more difficult after a tiring day, or when you have a house full of guests? => did the person not seem to understand what you were asking him/her to do? => what adjustments on your part seem to improve communication (e.g. speaking more slowly, giving one-step requests or directions, using simple, direct statements?) => does the person give indications that he/she is aware o f communication difficulties? = > as you become more aware of factors that help or hinder communication with the person for whom you are caring, you will be better able to plan ahead to anticipate potential difficulties, making it easier on the two o f you Adapted from Gwyther, L. P. (1997). “Home is where I rem e m b er th in fis” A curriculum for home and co m m u n ity A lz h e im e r g a te Raleigh, NC: North Carolina Department of Human Resources Division of Aging and from Rau, M. T. (1993). Coping with communication ch a lle n g e s in A lzh eim er’s D isease San Diego: Singular Publishing Company Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Practice Exercises. Session 7, 2 8 5 PRACTICE EXERCISES Observe your attending behavior and listening skills several times this week in various social settings—at home, with friends, at work, at the store. Observe the quality o f your presence with others when you are interacting with them (not including the person for whom you are caring). O f course, even being asked to “watch yourself’ will create changes in your behavior; you will probably “tune in” more effectively than you ordinarily do. The purpose o f this exercise is to raise your awareness o f your behavior and to get some idea o f what your day-to-day attending style and listening skills look like. 1. Think o f the following questions. What were you like when you are listening to others? What do you do? What needs improvement? What do you do well? 2. Here is an example o f what one person might write: I found mvself attending better to people I like. When I was listening to someone neutral. I found that mv eves and mv mind would wander. It is easier for me to tune in to others when I’m rested and alert. When I’m physically uncomfortable or tired. I don’t put in much effort to tune in. I was unpleasantly surprised to find out how easily distracted I am. However, simply bv paying attention to “tuning in” skills. I was “with” others more fully, even with neutral people. 3. Write a summary o f your observations in the space below. 1. Repeat this exercise, now focusing just on your interactions with the person for whom you are caring. What were you like when you are listening to others? What do you do? What needs improvement? What do you do well? Write a summary of your observations below. Adapted from Egan, G. (1998). Exercises in helping skills: A manual tn accompany The Skilled Helper (Sixth Edition). Monterey, CA: Brooks/Cole Publishing Company. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 286 Session 8: Communication strategies and wrap up I. Check in with current caregiving situation n. Review out-of-session practice: listening and attending behavior III. How dementia affects communication A. Dementia, particularly AD, affects both the ability to express oneself and the ability to understand what is said B. Dementia affects memory and thinking, which influence a person’s ability to generate words and ideas, to attach words to ideas, and to translate words into speech C. Specific impairments in communication result. (D is tr ib u te H a n d o u t 1 ). These impairments include: 1. reduced number of ideas being produced 2. difficulty finding words and the tendency to forget names o f objects 3. overuse o f particular phrases, common words, and increased repetition of words 4. frequent requests for clarification and confirmation 5. difficulty giving instructions and telling stories 6. diminished vocabulary 7. decreased spontaneous speech 8. difficulty or inability to use or understand abstract and complex ideas 9. irrelevant and off topic ideas 10. talking around the topic at hand, digressing from topic to topic 11. tendency to fill voids (which can mean confabulation) 12. tendency to omit words and phrases and use vague speech 13. tendency to leave sentences unfinished and phrases hanging Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 8 7 14. eventual inability to understand simple words; vocabulary becomes extremely limited 15. may withdraw and not speak at all B. Despite these impairments, persons with dementia still have some communication skills, including responsiveness to non-verbal communication C. You can support the remaining abilities o f the persons for whom you are caring by providing structure and supporting their attempts to express themselves. Today, we will discuss specific strategies for supporting communication but first, we will review some reasons as to why it is important to support communication D. Supporting communication will be beneficial to both o f you for several reasons: 1. your responses can help compensate for the impairments o f the persons for whom you are caring and help them maintain their interpersonal skills for as long as possible; (a) being able to maintain their interpersonal skills is fundamental to socialization which provides the primary means for them to feel supported, involved and able to contribute which increases their coping and adaptation (b) maintaining interaction and shared, turn-taking exchanges is important. A turn can be as simple as a nod or eye contact; interaction and communication includes non-verbal behavior 2. finding ways to continue to communicate and interact reduces physical and emotional barriers the result when you both withdraw from each other after feeling frustrated and misunderstood (a) often feelings of being misunderstood can be exacerbated by beliefs about what the persons for whom you are caring can or can not do. In terms o f communication skills: 1. e.g., you may assume greater comprehension and more adequate cognitive processing than exists because their speech seems intact and fluent 2. e.g. you also may assume a greater ability to retrieve and use interpersonal rules than they are capable o f e.g. married couples often do not state the obvious to their spouse; their communication lessens Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 288 because the spouse with AD can no longer draw on unspoken information to understand the meaning o f what is being said and therefore responses are often inappropriate (b) what this means is that there is greater responsibility on you, the caregiver, for understanding the meaning o f communication attempts and maintaining communication; however, you will receive greater rewards and experience a more positive relationship with the persons for whom you are caring if you can accept this responsibility E. Accurate information about communication changes associated with dementia will help you to maintain realistic/appropriate expectations and prevent misconceptions about the communication ability o f the persons for whom you are caring. Specific communication strategies will help you keep communication from breaking down which will reduce your own stress, frustration; give you greater feelings o f control; improve their quality of life IV. Relationship between communication and attending/listening behavior A. As mentioned last session, the ability to understand what the persons for whom you are caring are saying and respond to their needs, is related to the quality of your attention to them and to what you hear or what you perceive you hear; how you listen B. When there is not a match between your perception o f their behavior and what the behavior means, both you and the persons for whom you are caring become frustrated C. Thus, communication involves paying attention to their behavior and your behavior 1. your will want to pay attention to what they are saying, their interaction with you and your responses to them 2. in your responses to them, you will want to focus on their viewpoint; remember that the person communicates from different perspective/reality than is expected; you will want to stay with that reality, even if it does not seem to make sense to you V. Talking with them A. Before we discuss specific communication strategies, a word of caution: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 8 9 1. try not to be too hard on yourself if you find that you are not always using these strategies or doing the things that make you an effective listener, it may require that you change some lifelong habits o f talking and listening which takes time 2. however, you can and will learn these strategies and behaviors. Once learned and put into practice, your understanding o f the persons for whom you are caring and their ability to understand you will become easier. Thus, you will have better interactions together B. Specific strategies (distribute H andout 2) 1. address the person directly, maintain eye contact, speak calmly and clearly; use a tone o f voice that is calm, reassuring and projects a sense o f control of the situation (a) your attending behavior communicates your patience and willingness/interest to hear what the person is saying 2. try to get the persons for whom you are caring to tell you they feel (a) ask how they feel (b) help them name their feelings by giving suggestions about how they might be feeling 1. e.g. you are trying to get mom into the car to go to a doctor’s appointment and she starts yelling at you. You might say the following: (a) “It seems like you are angry about being taken to the doctor.” If you are correct and she is angry, she feels understood and might become more relaxed and cooperate with you (c) encourage them to express their feelings (frustration, anger, joy) and verbally recognize their discomfort if they are able ^ (d) show respect for their feelings if they can not find the words and reassure them that they will be OK, e.g. “I’m sorry that you are upset. I know that you do not want to go. There is nothing to be afraid of. The doctor will not harm you. I will stay with you.” 3. respond in a feeling tone similar to that communicated by the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 9 0 4. provide encouragement when the persons for whom you are caring are talking 5. it may not always be possible to understand the content of what they are saying but you can validate their feelings by responding to their non-verbal communication: body language, facial expression, tone of voice, e.g. laugh when they seem happy, ask “do you feel sad ?” when they look sad 6. watch for cues in their behavior that may indicate whether or not it is a good time to communicate (a) do them seem unable to listen?: lack o f direct eye contact, body position faced away, lack of nodding or other indication o f affirmation, lack o f behavior seeking more information such as touching, asking a question, confused facial expression, walking away (b) do they seem receptive?: relaxed, no muscle tension, facial expression relaxed, smiling, extending hand, verbal greeting, eye contact, no signs of anxiety such as wringing hands, leaning in your direction (c) depending on the cues you receive, you may need to leave them alone for a short while; tell them that you will return shortly (d) if the persons are refusing to do something that they normally do, assume that they are sad, angry, frustrated, embarrassed, anxious about their condition 7. when you ask questions, be careful not to create too many demands which will confuse and agitate the persons for whom you are caring (a) be concise and ask one question at a time (b) make sure that the questions are simple, require a yes or no answer, e.g. “Are you hungry?” or offer limited choices rather than being open ended, e.g. “Do you want water or juice?” vs. What do you want to drink?” (helps them retain control) (c) give the persons plenty o f time to respond 8. when speaking, again you will want to limit the demands that you place on the persons for whom you are caring (a) use short, familiar words and simple, concrete sentences Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 291 (b) use and repeat nouns not pronouns, e.g. “here is your coat” not “here it is” (c) repeat when the persons are not able to follow the conversation (d) avoid giving too many details, e.g. reassure your mother that her son will return without all the specifics about where he went, why and when 9. encourage the persons for whom you are caring to talk, even if you do not understand them: it will help to reduce agitation 10. use humor : it eases anxiety and creates an atmosphere o f warmth and acceptance 11. if you do not understand the persons for whom you are caring, try to clarify; Ask “do you mean X?”; reassure them that they are OK and everything is fine 12. avoid using logic, reasoning, correcting or arguing with the persons for whom you are caring because it is only going to upset them (agitation, fear) and you further VI. Review: Briefly I will summarize what you learned during our 8 sessions together A. Building empathic coping for the persons for whom you are caring 1. perceiving accurately the feelings of the persons for whom you are caring and communicating accurately and sensitively your understanding to them 2. involves: (a) taking the perspective o f the persons for whom you are caring by viewing the world as they see it; seeing the world through their lenses; walking in their shoes (b) interpreting (trying to understand) the feelings behind the persons’ behavior (c) communicating your understanding in a non-judgmental or helping way 3. essentially means: (a) finding ways to keep the persons for whom you are caring included in things you are doing, relating to you Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 9 2 (b) rationale: allows more positive way of relating between you and persons for whom caring— promotes better relationship due to: 1. greater emotional connection 2. better communication 3. better understanding which leads to more effective ways of responding and reacting to the persons for whom you are caring (reducing relationship-interfering behaviors, enhancing relationship-promoting behaviors) and less problem behaviors in persons for whom you are caring (c) help you feel better about caregiving and about your competence as a caregiver B. Information about dementia and what it is like to have dementia; this information was used to increase your understanding of the persons for whom you are caring C. How to become more aware o f your own feelings and the feelings and needs o f the persons for whom you are caring 1. increased awareness o f your emotions will help you gain better control over your emotional reactions, which will help you respond better to the persons for whom you are caring 2. and why this is important?; how you express your emotions non-verbally— tone of voice, fecial expressions, body language—has a big impact on the persons for whom you are caring; they respond to your tone o f voice and body language even when they do not understand your words 3. we also discussed how to figure out the needs and feelings o f the persons for whom you are caring (a) how to read their body language, facial expressions, voice, etc. because as their ability to express themselves verbally declines, they become increasing dependent on non-verbal behavior to express how they feel and what they need (b) we talked about ways to become a more accurate perceiver of the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 9 3 1. looking for cues in their facial expression, body language, manner of speaking 2. identifying the judgments, beliefs, attitudes, expectations that you have about the persons for whom you are caring and the ways in which these beliefs can lead to misperception and miscommunication; this misperception, in turn, can have negative effects on both you and the persons for whom you are caring (c) we discussed how accurate perception leads to a better understanding of their behavior which will help you respond in new, more helpful ways; e.g. providing reassurance and helping the persons for whom you are caring cope with and adapt to their disease 1. thus, taken together, how you perceive the persons for whom you are caring will influence how you respond to them; also their responses toward you will be dependent on their perception o f you 2. in short, how you perceive the person for whom caring is important in determining your relationship with him/her D. We spent time learning about situations that can make the persons for whom you are caring upset and why, and what to do and say in these situations 1. with this knowledge, you will be better able to figure out what to do for them to calm them down 2. this will also help you feel better and be less stressed out 3. ultimately, it will help you both have more enjoyable times together and less time arguing with and misunderstanding one another E. Finally, we spent time learning about listening attending and communicating with the persons for whom you are caring Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 294 Handout 1, Session 8 IMPAIRMENTS IN COMMUNICATION • reduced number o f ideas being produced • difficulty finding words and the tendency to forget names of objects • overuse o f particular phrases, common words, and increased repetition o f words • frequent requests for clarification and confirmation • difficulty giving instructions and telling stories • diminished vocabulary • decrease in spontaneous speech • difficulty or inability to use or understand abstract and complex ideas • irrelevant and off topic ideas • talking around the topic at hand, digressing from topic to topic • tendency to fill voids as best they can (which can mean confabulation) • tendency to omit words and phrases and use vague speech • tendency to leave sentences unfinished and phrases hanging • eventual inability to understand simple words; vocabulary becomes extremely limited • may withdraw and not speak at all Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 9 5 Handout 2, Session 8 T a lk in g w ith th e p e r s o n f o r w h o m y o u a r e c a r in g • Monitor your attending and listening behavior => address the person directly, maintain eye contact, speak calmly and clearly; use a tone o f voice that is reassuring and projects a sense o f control o f the situation (Remember that your attending behavior communicates your patience and willingness/interest to hear what the person is saying) => listen for how your listening responses influence the person’s level o f anxiety (and consequent behaviors) • Monitor attending and listening behavior o f the person for whom you are caring => non-listening behavior: lack of direct eye contact; body position faced away; lack of nodding or other indications that you have heard; lack of behavior seeking more information, e.g. touching, asking questions; confused facial expression, walking away => receptive behavior: relaxed, no muscle tension, facial expression relaxed, smiling, extending hand, verbal greeting, eye contact, no signs of anxiety such as wringing hands, leaning in your direction => non-receptive behavior: backs away, turns head or body away, walks away, avoids eye contact, pulls away, shrinks away from being touched, tells you to go away, frowns, increases general body movement • Try to get the person for whom you are caring to tell you how he/she feels = > ask the person how he/she feels => help him/her name his/her feelings by giving suggestions about how he/she might feel => verbally recognize his/her feelings and show respect for them; reassure him/her that he/she will be OK, e.g. “I’m sorry that you are upset. I know that you do not want to go. There is nothing to be afraid of. The doctor will not harm you. I will stay with you.” => it may not always be possible to understand the content o f what the person is saying; however, you still can learn a lot about how they might be feeling and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 296 validate those feelings by responding to the person’s nonverbal communication, e.g. body language, facial expression, tone of voice • If you do not understand the person: => try to clarify; ask “do you mean... ?” => reassure him/her that he/she is OK and everything is fine => avoid using logic, reasoning, correcting or arguing because it is only going to upset you and the person for whom you are caring = > if communication fails and the person is agitated or refusing to do something that he/she normally does, assume that she/he has become sad, angry, frustrated, embarrassed, anxious about his/her condition => you may even need to leave him/her alone for a short while and then return if the person too agitated to respond or talk • Provide encouragement when the person is talking and encourage him/her to keep talking even if you do not understand them: it will help him/her to feel included and reduce agitation • Respond in a feeling tone similar to that communicated by the person, e.g. laugh when he/she seems happy, be quiet and comforting when he/she look sad • When you ask questions, you will want to be careful not to create too many demands which will confuse and agitate the person: => be concise and ask one question at a time => make sure that the questions are simple, require a yes or no answer, e.g. “Are you hungry?” or offer limited choices rather than being open ended, e.g. “Do you want water or juice?” vs. What do you want to drink?” (helps them retain control) => give the person plenty of time to respond • When speaking, you also will want to limit demands => use short, familiar words and simple, concrete sentences Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 297 => use and repeat nouns rather than pronouns, e.g. “here is your coat” not “here it is” => repeat what you have said when the person is not able to follow the conversation => avoid giving too many details, e.g. reassure your mother that her son will return without all the specifics about where he went, why and when • Use humor: it eases anxiety and creates an atmosphere o f warmth and acceptance Adapted from Carkhuff, R. R. (1969). Helping and human relations: A primer for lay and professional helpers (Vol 1): Selection and training. New York: Holt, Rinehart &Winston; Carkhuff, R. R. (1969). Helping and human relations: A primer for lay and professional helpers (Vol 2): Practice and research. New York: Holt, Rinehart &Winston; Ivey, A. E. and Authier, J. (1978). Microcounseling. Springfield, IL: Charles C Thomas; and Rau, M. T. (1993). Coning with communication challenges in Alzheimer’s Disease. San Diego: Singular Publishing Company Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 9 8 APPENDIX C MEASURES Page Demographics................................................................................................................ 299 Blessed Dementia Scale.......................................................................................................... 303 Revised Memory and Behavior Problem Checklist............................................................. 305 Rank ordering of stressors/ Coping Strategies Questionnaire/ Empathic Responding scale...............................................................................................................308 Interpersonal Reactivity Index................................................................................................ 316 Dyadic Relationship Strain Scale............................................................................................320 Family Relationship Strain Scale............................................................................................322 Social Activity Restrictions Scale...........................................................................................323 Caregiving Satisfaction Scale................................................................................................. 324 Caregiving Competence Scale................................................................................................ 325 Brief Symptom Inventory........................................................................................................ 326 Bradbum Affect Balance Scale...............................................................................................328 Communal Orientation Scale.................................................................................................. 329 Exchange-Orientation Scale................................................................................................... 331 Social Interaction Scale........................................................................................................... 334 Relational Deprivation S c a le ................................................................................................. 335 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 9 9 CAREGIVER INTAKE FORM (Information about you the caregiver) Name: __________________________________________ Address: ______________________________________________ City:____________________ Zip code:______________ Home Phone: (_____ )_____________________ Work Phone: (_____ )_______________________ Gender: M F A ge:_______ Highest level o f education achieved:_______ Native American Latina/Latino ) Ethnic Background: African American Asian/Pacific Islander Caucasian Multiracial (Please specify: Other Marital status: _____ Married Divorced Widowed Never married Fully retired Retired, work Homemaker Family/Household Income (income available to you): below $5,000 $5,001 - $15,000 $15,001 - $25,000 $25,001 - $35,000 $35,001 - $45,000 $45,001 -$55,000 $55,001 - $65,000 $65,001 - $75,000 $75,001 -$85,000 above $85,000 Employment status: _____ Employed full-time Employed part-time part-time Unemployed, but looking for work Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 0 0 Number o f people living in your household:_______ Other people living in your household:____________ _____ Child Grandchild Parent Grandparent Sibling Spouse Other For whom are you caring? (what is your relationship to the person for whom you are caregiving) _______________________ Do you live with the person for whom you are caring? Yes No If yes, for how long have you lived together? ___________ If no, where does the person for whom you are caring live? Independently Another relative Nursing home Board and care/assisted living Other (Please specify______________________________) Duration o f time as primary caregiver (length o f time that you have been caregiving): _______ Years ________ Months Number o f hours per week providing care:_____________ Number o f hours per day spent: _______ Providing personal care for the person for whom you are caring _______ Keeping an eye on the person for whom you are caring Do you receive any o f the following forms o f assistance with caregiving: In-home respite care Yes No Out-of-home respite Yes No Adult dav care Yes No Visiting nurse Yes No Live-in help Yes No Someone with whom you can leave your family member for a period o f time Yes No Other (please describe) Yes No Have you participated in the past in support groups for dementia caregivers? Yes No If yes, approximately how many meetings did you attend?_____ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 301 Have you ever received or are you currently receiving psychotherapy for issues related to caregiving? Yes No Where did you hear about this group? Caregivers often have a variety o f reasons for caregiving for their impaired family member. Please rank the following 5 reasons for why you are caregiving for your family member with 1 = the most important reason and 5 = least important reason. Each reason should be given a separate number such that all five numbers are used. _______ Gratitude _______ Obligation or Duty _______ Feelings o f Attachment _______ Usefulness and Personal Satisfaction Financial Considerations Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 0 2 INFORMATION ABOUT CARE RECIPIENT (Information about the person for whom you are caring) Gender M F A ge:_______ Highest level o f education achieved:_______ Ethnic Background: _____ African American _____ Native American Asian/Pacific Islander Latina/Latino Caucasian Multiracial (Please specify:__________________ ) Other Marital status: _____ Married Divorced Widowed Never married Diagnosis: _____ possible/probable Alzheimer’s Disease Multi-Infarct Dementia (MID) or Vascular Dementia Mixed Dementia dementia o f unknown cause other, please explain If diagnosis has been given: Date o f diagnosis:_____________________ Diagnosis done by: _____ Family doctor Specialist Specialized clinic/geriatric assessment center other Duration o f symptoms, e.g. how long ago was it when you first noticed changes: Other medical or psychiatric conditions: Prescription medications: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 0 3 Blessed Dementia Scale Please indicate your estimate o f your impaired family member's current ability to do the following things, with 0 = Usually able, 0.5 = Sometimes able, and 1 = Rarely able. 1. A bility to recall recent events (e.g., recent outings, visits o f relatives or friends, etc.). Usually able Sometimes able Rarely able Don’t Know 0 .5 1 9 2. A bility to remember short lists o f things (e.g., a shopping list). Usually able Sometimes able Rarely able Don’t Know 0 .5 1 9 3. Tendency to dwell in the past. Usually dwells Sometimes dwells Rarely dwells Don’t Know 0 .5 1 9 4. A bility to find his/her way about fam iliar streets. Usually able Sometimes able Rarely able Don’t Know 0 .5 1 9 5. A bility to find his/her was about indoors (home or other fam iliar locations). Usually able Sometimes able Rarely able Don’t Know 0 .5 1 9 6. A bility to understand situations or explanations. Usually able Sometimes able Rarely able Don’t Know 0 .5 1 9 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 0 4 Please indicate your estimate o f your impaired family member's current ability in the following areas: 7. A bility to perform household tasks. As well as Before Some Loss Severe Loss Don’t Know 0 .5 1 9 8. A bility to cope with small sums o f money. As well as Before Some Loss Severe Loss Don’t Know 0 .5 1 9 Please indicate your estimate o f your impaired family member's performance and mental ability in the following areas: 9. Dressing 0 Unaided 1 Minor help (occasionally misplaces buttons, etc.) 2 Major help (forgets items, requires much assistance, puts clothes on in wrong sequence) 3 Unable to dress self 9 Don't know 10. Eating habits 0 Unaided (eats neatly, uses proper utensils, feeds self without assistance) 1 Minor help (eats messily, uses spoon, needs minor assistance) 2 Major help (simple solid foods, needs much assistance) 3 Unable (has to be fed completely) 9 Don't know 11. Continence 0 Clean, cares for self at toilet 1 Occasional incontinence, or needs to be reminded 2 Frequent incontinence, or needs much assistance 3 Little or no control, doubly incontinent 9 Don't know Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Revised Memory and Behavior Problems Checklist The following is a list of problems individuals with dementia sometimes have. Please indicate if any of these problems have occurred during the past week. If so, how much has this bothered or upset you when it happened? How confident do you feel in handling the problem? Use the following scales for the frequency of the problem, how bothered/upset you were by it and then how confident you felt in handling it. Please read the description of the ratings carefully Frequency Ratings 0 = never occured 1 = not in the past week 2 = 1 or 2 times in the past week 3 = 3 to 6 times in the past week 4 = daily or more ofter 9 = don’t know/not applicable Bothered/Upset Ratings 0 = not at all 1 = a little 2 = moderately 3 = very much 4 = extremely 9 = don’t know/not applicable Confidence Ratings 0 = not at all 1 = a little 2 = moderately 3 = very 4 = extremely 9 = don’t know/not applicable Please answer all the questions below. Please circle a number from 0-9 for frequency, botheredlupset, and confident. 1 Asking the same question over and over. 2 Trouble remembering recent events (e.g. items in the newspaper or on TV). 3 Trouble remembering significant past events. 4 Losing or misplacing things. Frequency 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 Bothered/Upset 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 Confident 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. 5 Forgetting what day it is. 6 Starting, but not finishing, things. 7 Difficulty concentrating on a task. 8 Destroying property. 9 Doing things that embarrass you. 10 Waking you or other family members up at night. 11 Talking loudly and rapidly. 12 Appears anxious or worried. 13 Engaging in behavior that is potentially dangerous to self or others. 14 Threats to hurt oneself. 15 Threats to hurt others. 16 Aggressive to others verbally. 17 Appears sad or depressed. Frequency Bothered/Upset Confident 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 306 Reproduced with permission o f th e copyright owner. Further reproduction prohibited without permission. Frequency 18 Expressing feelings of hopelessness or sadness 0 1 2 3 4 9 about the future e.g., ("Nothing worthwhile ever happens," "I never do anything right"). 19 Crying and tearfulness. 0 1 2 3 4 9 20 Commenting about death of self or others 0 1 2 3 4 9 (e.g., "Life isn't worth iving," "I'd be better off dead"). 21 Talking about feeling lonely. 0 1 2 3 4 9 22 Comments about feeling worthless or 0 1 2 3 4 9 being a burden to others. 23 Comments about feeling like a failure or 0 1 2 3 4 9 about not having any worthwhile accomplishments in life. 24 Arguing, irritability, and/or complaining. 0 1 2 3 4 9 Bothered/Upset Confident 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 0 1 2 3 4 9 3 0 7 Coping Strategies Questionnaire 3 0 8 Caregivers often face a variety o f situations that they find stressful. Please rank the following situations from 1 through 3, with 1 being the situation that causes you the most distress and 3 being the situation that causes you the least distress. Relationship with impaired family member Management o f household responsibilities Amount of participation in social activity Please indicate how often during the past month you used each o f the following strategies in dealing with vour relationship w ith vour im paired fa m ily m em ber. 1. W ished you were a stronger person to deal with the situation better. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 2. W ished you could change the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 3. W ished you could change the way you felt about the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 4. Accepted the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 5. Refused to let the situation get to you. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 6. M ade the best o f the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 0 9 7. You knew what had to be done, so you tried harder to make things work. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 8. Had fantasies about how things might turn out. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 9. Told yourself things to help you feel better. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 10. Hoped a miracle would happen. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 11. Daydreamed/imagined a better tim e or place than the one you were in. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 12. M ade a plan o f action and followed it. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 13. Felt inspired to be creative in solving the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 14. Came up with a couple of different solutions to the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 1 0 15. Changed som ething about yourself so you could deal with the situation better. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 16. Did som ething totally new to solve the situation. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 17. Tried to understand your impaired relative's concerns. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 18. Tried to understand how your impaired relative felt. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 19. Tried to experience what your impaired relative w as feeling. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 20. Imagined yourself in your impaired relative's shoes. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 21. Tried to see things from your impaired relative's point o f view. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 22. Tried to accept your impaired relative as he/she is now. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 31 1 23. Tried to help your unpaired relative involved by listening to him/her. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 24. Tried to help your impaired relative involved by doing something for him/her. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 25. Tried to figure out what would make your impaired relative feel better. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 26. Tried to provide comfort to your impaired relative involved by telling him/her about your positive feelings for him/her. Never Rarely/Seldom Sometimes Often Most o f the Time 1 2 3 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 1 2 Please indicate how often during the past month you used each o f the following strategies in dealing with vour m anagem ent o f household responsibilities. 1. W ished you were a stronger person to deal with the situation better. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 2. W ished you could change the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 3. W ished you could change the way you felt about the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 4. Accepted the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 5. Refused to let the situation get to you. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 6. M ade the best o f the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 7. You knew what had to be done, so you tried harder to make things work. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 8. Had fantasies about how things might turn out. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 13 9. Told yourself things to help you fed better. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 10. Hoped a miracle would happen. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 11. Daydreamed/imagined a better tim e or place than the one you were in. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 12. M ade a plan o f action and followed it. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 13. F d t inspired to be creative in solving the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 14. Came up with a couple o f different solutions to the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 IS. Changed something about yourself so you could deal with the situation better. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 16. Did something totally new to solve the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 1 4 Please indicate how often during the past month you used each of the following strategies in dealing with vour a m o u n t o f participation in so cia l activity. 1. W ished you were a stronger person to deal with the situation better. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 2. W ished you could change the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 3. W ished you could change the way you felt about the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 4. Accepted the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 5. Refused to let the situation get to you. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 6. M ade the best o f the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 7. You knew what had to be done, so you tried harder to make things work. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 8. Had fantasies about how things might turn out. Never Rarely/Seldom Sometimes 1 2 3 Often Most of the Time 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 1 5 9. Told yourself things to help you fed better. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 10. Hoped a m irade would happen. Never Rareiy/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 II. Daydream ed/im agined a better tim e or place than the one you were in. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 12. M ade a plan o f action and followed it. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 13. F d t inspired to be creative in solving the situation. Never Rarely/Seldom Sometimes 1 2 3 Often 4 Most o f the Time 5 14. Came up w ith a couple o f different solutions to the situation. Never Rarely/Seidom Sometimes 1 2 3 Often Most o f the Time 4 5 15. Changed som ething about yourself so you could deal with the situation better. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 16. Did som ething totally new to solve the situation. Never Rarely/Seldom Sometimes 1 2 3 Often Most o f the Time 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 1 6 Interpersonal Reactivity Index Please rate the following items based on how well they describe you: 1 .1 often have tender, concerned feelings for people less fortunate than me. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 2 .1 sometimes find it difficult to see things from the "other guy's” point o f view. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 3. Sometimes I don't feel very sorry for other people when they are having problems. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 4. In emergency situations, I feel apprehensive and ill-at-ease. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 5 .1 try to look at everybody's side o f a disagreement before I make a decision Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 6. W hen I see someone being taken advantage of, I feel kind o f protective towards them. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 1 7 7 .1 sometimes feel helpless when I am in the middle o f a very emotional situation. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 8. I sometimes try to understand my friends better by im agining how things look from their perspective. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 9. When I see someone get hurt, I tend to remain calm. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 10. Other people's misfortunes do not usually disturb me a great deal. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 11. If I'm sure I'm right about something, I don't w aste much tim e listening to other people's arguments. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 12. Being in a tense emotional situation scares me. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 318 13. W hen I see someone being treated unfairly, I sometimes don't feel very much pity for them. Strongly Agree 0 Agree 1 Undecided 2 Disagree 3 Strongly Disagree 4 1 4 .1 am usually pretty effective in dealing with emergencies. Strongly Agree 0 Agree 1 Undecided 2 Disagree 3 Strongly Disagree 4 1 5 .1 am often quite touched by things that I see happen. Strongly Agree 0 Agree 1 Undecided 2 Disagree 3 Strongly Disagree 4 1 6 .1 believe that there are two sides to every question and try to look at them both. Strongly Agree 0 Agree 1 Undecided 2 Disagree 3 Strongly Disagree 4 1 7 .1 would describe m yself as a pretty soft-hearted person. Strongly Agree 0 Agree 1 Undecided 2 Disagree 3 Strongly Disagree 4 1 8 .1 tend to lose control during emergencies. Strongly Agree 0 Agree 1 Undecided 2 Disagree 3 Strongly Disagree 4 19. W hen I'm upset at someone, I usually try to "put m yself in his/her shoes" for a w hile. Strongly Agree 0 Agree 1 Undecided 2 Disagree 3 Strongly Disagree 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 319 20. When I see som eone who badly needs help in an emergency, I go to pieces. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 21. Before criticizing somebody, I try to imagine how I would feel if I were in their place. Strongly Strongly Agree Agree Undecided Disagree Disagree 0 1 2 3 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 2 0 Dyadic Relationship Strain Scale Sometimes caregiving can affect a caregiver's relationship with the care receiver. Please think about how your relationship with your impaired family member may have been affected by helping him/her during the past four weeks. Indicate whether you strongly agree, agree disagree or strongly disagree with the following statements. B ecause o f h elp in g m y im paired fa m ily m em ber: 1 .1 felt that he/she made requests over and above w hat he/she needed/I could do. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 2 .1 felt angry towards him/her. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 3 .1 felt depressed because of my relationship with him/her. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 4 .1 felt resentful toward him/her. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 5 .1 felt that he/she tried to manipulate me. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 6 .1 felt that my relationship with him/her was strained. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 7 .1 really enjoyed being with him/her. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 8 .1 felt appreciated for what I do. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 9 .1 got pleasure out o f helping him/her. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 2 2 Family Relationship Strain Scale Sometimes caregiving can affect your relationship with other family members. Please think about how your relationship with other family members may have been affected by helping your impaired family member during the past four weeks. Indicate whether you strongly agree, agree, disagree, or strongly disagree with the following statements. B ecause o f h elp in g m y im paired fa m ily m em ber: 1 .1 felt closer to my other family members Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 2 .1 felt pressured between trying to care for my impaired family member and my other fam ily members. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 3 . 1 relied on my other fam ily members for help and support. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 4 . 1 felt relationships with other fam ily members were more difficult or strained. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 5. Relationships with (other) fam ily members have become more important. Strongly Agree Agree Disagree Strongly Disagree 3 2 1 0 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 2 3 Social Activity Restrictions Scale Sometimes caregiving influences a caregiver's ability to participate in social activities. Please think about different kinds o f social activities and whether you participated in each, more often, the same, or less often because o f helping your impaired family member during the past four weeks. B ecause o f h elp in g y o u r im p a ired fa n u ly m em ber d id yo u : 1. participate in church or religious activities more often, the same or less often? More Often The Same Less Often 0 1 2 2. visit with friends or family more often, the same, or less often? More Often The Same Less Often 0 1 2 3. participate in group or organized activities more often, the same o f less often? More Often The Same Less Often 0 1 2 4. engage in volunteer activities more often, the same, or less often? More Often The Same Less Often 0 1 2 5. go out to dinner, the theater, or to a show more often, the same, or less often? More Often The Same Less Often 0 1 2 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 2 4 Caregiving Satisfaction Scale Please rate the extent to which you agree with each statement listed below. 1. You really enjoy being with your impaired family member. Strongly Strongly Agree Agree Neutral Disagree Disagree 1 2 3 4 5 2. Your impaired fam ily member shows real appreciation o f w hat you do for [him/her]. Strongly Strongly Agree Agree Neutral Disagree Disagree 1 2 3 4 5 3. Your impaired fam ily member's pleasure over some little thing gives you pleasure. Strongly Strongly Agree Agree Neutral Disagree Disagree 1 2 3 4 5 4. Helping your impaired family member has made you feel closer to [him/her]. Strongly Strongly Agree Agree Neutral Disagree Disagree 1 2 3 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Caregiving Competence Scale 325 Here are some thoughts and feelings that people sometimes have about themselves as caregivers. How much does each statement describe your thoughts about your caregiving? H ow m u ch do y o u : A. Believe that you've leaned how to deal with a very difficult situation. Not At All Just a Little Somewhat Very Much 1 2 3 4 B. F ed that all in all, you're a good caregiver. Think now o f all the things you face as a caregiver: the daily ups and downs; the job you are doing; and the ways you deal with difficulties. Putting all these things together, how (WORD) do you feel? C. Com petent Not At All 1 Just a Little 2 Somewhat 3 Very Much 4 Not At All 1 Just a Little 2 Fairly 3 Very 4 D. Sdf-confident Not At All 1 Just a Little 2 Fairly 3 Very 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 2 6 B Sl Below is a list o f problem s people som etim es have. Please read each one carefully, and circle the num ber to the right that b est describes HOW M U CH TH AT PROBLEM HAS DISTRESSED O R BOTHERED YOU DURING THE PA ST 7 DAYS INCLUDING TODAY. Circle only one num ber for each problem and do not skip any items. If you change your mind, erase your first m ark carefully. I f you have any questions please ask about them. _______ ________________________________________________________________________ HOW MUCH WERE YOU DISTRESSED BY N 0 A M o Q u E X T L D I T 1 E T R A T R E E T T A M L T A E A E E L L L B Y L B I T Y I T 1 . W rnrw uaw o r d a U r e i M f c 1 0 1 2 3 4 2 . Fahdaem o f dfaoriaeaa 2 0 1 2 3 4 3 . The idea th at someone c h t can control your thongMs 3 0 1 2 3 4 4 . Feehagothei* are to blame for amat o f yoor troaMea 4 0 1 2 3 4 S . TroaMe remembering thfaga 5 0 1 2 3 4 6 . FeeMngearity annoyed o r Irritated 6 0 1 2 3 4 7 . Paine in heart o r cheat 7 0 1 2 3 4 8 . FeeHag afraid hi open apacea 8 0 1 2 3 4 9 . Thnaghta o f * a th | yoor ifc 9 0 1 3 4 1 0 . Feefcg th at moat peaple cannot he treated 1 0 0 1 2 3 4 1 1 . Poor appetite 1 1 0 1 2 3 4 1 2 . S a ttra iy ecared lo ra o rraaoa 1 2 0 1 2 3 4 1 3 . Tem per onthnrata th at yon cooU not control 1 3 0 1 2 3 4 1 4 . Feeling looely evea when yoo are with people 1 4 0 1 2 3 4 1 5 . F eefr« blocked hi getting tMaga done 1 5 0 1 2 3 4 1 6 . • * - a --- f C C H | K n K i y 1 6 0 1 2 3 4 1 7 . FeeOag Mae 1 7 0 1 2 3 4 1 8 . FeeOag ao hMereat la tUaga 1 8 0 1 2 3 4 1 9 . FcdfcgfeariW 1 9 0 1 2 3 4 2 a Yoor fcehaga hejag eerily hart 20 0 1 2 3 4 2 1 . FeeMng th at people are unfriendly o r dtiMlfr yoo 2 1 0 1 2 3 4 2 2 . Feeling inferior to others 22 0 1 2 3 4 2 3 . Naaaea o r apoet etnmach 2 3 0 1 2 3 4 2 4 . FeeHog th at yoo are watched o r talked afaoot by others 2 4 0 1 2 3 4 2 5 . Trooble « d h | aaleep 2 5 0 1 2 3 4 2 6 . Havbag to check aad doable check what yoo do 2 6 0 1 2 3 4 2 7 . DifBcalty nrnbfog decialoae 2 7 0 1 2 3 4 2 8 . Feeiwg afraid to travel oa bmea, eabways, o r trahw 2 8 0 1 2 3 4 2 9 . Trouble getting yoor breath 2 9 0 1 2 3 4 3 0 . Hot o r cold apehe 3 0 0 1 2 3 4 3 1 . Having to avoid certahi things, places, o r activities became they frighten yoo 3 1 0 1 2 3 4 3 2 . Your adad going blank 3 2 0 1 2 3 4 3 3 . Nnmbneaa o r dagMng in porta o f your body 3 3 0 1 2 3 4 3 4 . The Idea that yon ihnuld be pnnlahed fo r your rina 3 4 0 1 2 3 4 3 5 . Feehag bopeleaa about the M are 3 5 0 1 2 3 4 3 6 . Trouble concentrating 3 6 0 1 2 3 4 3 7 . Feehag weak in parta of your body 3 7 0 1 2 3 4 3 a Feehng teaae o r keyed up 3 8 0 1 2 3 4 3 9 . Thoaghta of death o r dying 3 9 0 1 2 3 4 4 a Havfog nrgea to beat, h jn re, o r harm aomenae 4 0 0 1 2 3 4 4 1 . Having nrgca to break o r nm nh thiaga 4 1 0 1 2 3 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 2 7 HOW MUCH WERE YOU DISTRESSED BY N O A M O Q u E X T L D 1 T I E T I t A T R. E E T T A M L T A E A E E L L L B Y L B I T Y I T 4 2 . F c d h f w ry aelf-rinarioai wttli o tttn 4 2 0 1 2 3 4 4 3 . Feeing m m t la cranris 4 3 0 1 2 3 4 4 4 . Never f n h | doae to another penoa 4 4 0 1 2 3 4 4 5 . S pell o f te rro r o r panic 4 5 0 1 2 3 4 4 6 . Getting tato ftrq neat a r f a e n ti 4 6 0 1 2 3 4 4 7 . F e d h jn i n u i a In a yon are left ainar 4 7 0 1 2 3 4 4 8 . Others not giving yon proper credit te r yonr achteveawnts 4 8 0 1 2 3 4 4 9 . Feeihtg io restless yon coaM a't tit stil 4 9 0 1 2 3 4 5 0 . 5 0 0 1 2 4 5 1 . Feeing th at people wte taiie advantage o f yon tf yon let them 5 1 0 1 2 3 4 5 2 . Feeing! o f faHt 5 2 0 1 2 3 4 5 3 . The Idea that lonir thing Is arrung with yonr adad 5 3 0 1 2 3 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 2 8 Affect Balance Scale The following sentences describe how people sometimes feel about their lives. During the past week, did you ever feel: YES NO 1. Particularly excited or interested in something?________ _____ _____ 2. So restless you couldn't sit long in a chair?__________________ _____ 3. Proud because someone com plim ented you on som ething you had done?____________________________________ _____ 4. Very lonely or remote from other people?______________ _____ _____ 5. Pleased about having accom plished som ething?______________ _____ 6. Bored?___________________________________________________ _____ 7. On top o f the w orld/feding that life is wonderful?_______ _____ _____ 8. Depressed or very unhappy? _____ _____ 9. That things were really going your way? _____ _____ 10. Upset because somebody criticized you? _____ _____ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 2 9 Communal Orientation Scale Please read each statement and to rate how characteristic the item is o f you. 1. It bothers me when other people neglect my needs. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 2. W hen making a decision, I take other people's needs and feelings into account. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 3. I'm not especially sensitive to other people's feelings. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 4 .1 don't consider m yself to be a particularly helpful person. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 5 .1 believe people should go out o f their w ay to be helpful. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 6 . 1 don't especially enjoy giving others aid. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 7 .1 expect people I know to be responsive to my needs and feelings. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 8 . 1 often go out o f my way to help another person. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 3 0 9 .1 believe it's best not to get involved taking care o f other people's personal needs. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 10. I'm not the sort o f person who often comes to the aid o f others. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 11. W hen I have a need, I turn to others I know for help. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 12. W hen people get emotionally upset, I tend to avoid them. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 13. People should keep their troubles to themselves. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 14. W hen I have a need that others ignore, I'm hurt. Extremely Uncharacteristic Extremely Characteristic 1 2 3 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 3 1 Exchange Orientation Scale-Revised Please indicate the degree to which you agree with each o f the following statements: 1. I usually remember if I owe someone money or if someone owes me money. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 2. I usually do not forget if I owe someone a favor or if som eone owes me a favor. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 3. If I were to campaign for someone running for office, I'd expect some sort o f compensation or at least recognition. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 4. If I give someone a ride to work on an occasional basis (approximately 6 times a month), then I expect him or her to repay me in some way. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 5. When buying a present for someone I often try to remember the value o f what they have given me in the past. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 6. If I tell someone about my private affairs (business, fam ily, love experiences), I expect them to tell me something about theirs. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 3 2 7. I wish people would show more acknowledgment when I say or do nice things to them. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 8. I will not send a second letter to a friend unless I had received a letter or phone call in response to my first letter. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 9. If I praise a friend for his or her accomplishments, I expect him or her to praise me for m ine as well. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 10. I don't like people who don't fulfill their obligations to me. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 11. I f l show up on tim e for an appointment, I become upset if the person with whom I have the appointm ent shows up late. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 12. If I take a friend out to dinner, I expect him or her to do the same for me sometime. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 13. A student w hose education is financed by his or her parents owes his or her parents com pensation in some form (respect, obedience, money). Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 14. If I do the dishes three times a week then I expect my spouse to do them three tim es a w eek also. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 15. It does not m atter if people I like do less for me than I do for them. Strongly Mildly Mildly Strongly Agree Agree Undecided Disagree Disagree 1 2 3 4 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 3 4 Social Interaction Scale Dementing illnesses can often change the nature o f relationships. Please rate the following according to how your relationship with your impaired family member was before the onset o f his/her illness. B efore th e o n set o f h is/h er illness, d id you : 1. Laugh and joke together? Much o f the Time 0 Sometimes 1 Never 2 2. F ed cross or angry with him/her? Much o f the Time 0 Sometimes 1 Never 2 3. F ed he/she was possessive? Much o f the Time Sometimes 0 1 Never 2 4. F ed he/she interfered too much (in your life, family affairs, household, etc.)? Much o f the Time 0 Sometimes 1 Never 2 5. F ed any tension or strain in the relationship? Much o f the Time 0 Sometimes 1 Never 2 6. Have upsettingglisagreements or arguments, or find yourselves not speaking? Much o f the Time 0 Sometimes 1 Never 2 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 3 5 Relational Deprivation Scale Caregivers sometimes feel that they lose important things in life because o f their relative's illness. To what extent do you feel that you personally have lost the following? H ow m u ck h a ve y o u lo st. 1. Being able to confide in your relative. Not at All Somewhat Quite a Bit Completely 1 2 3 4 2. The person that you used to know. Not at All Somewhat Quite a Bit Completely 1 2 3 4 3. Having someone who really knew you well. Not at All Somewhat Quite a Bit Completely 1 2 3 4 4. The practical things (he/she) used to do for you. Not at All Somewhat Quite a Bit Completely 1 2 3 4 5. A chance to do some o f the things you planned. Not at All Somewhat Quite a Bit Completely 1 2 3 4 6. Contact with other people. Not at All Somewhat Quite a Bit Completely 1 2 3 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 3 6 APPENDEX D CORRELATION MATRIX Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CORRELATION MATRIX w P M 1 £ • 0 0 S o • « n | r : s ■ 1 * * • * ! * p m * O n w ^ " T i ' r “ ♦ , v p r - i o p * ! » — p m p * ® I* « £ § 2 2 ♦ , 0 0 CM * 1 — © Jg » ; i ^ f- 2 2 f ^ I o P I . . . 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Asset Metadata

Creator Kasl-Godley, Julia Elizabeth (author)

Core Title Experimental evaluation of a new intervention designed to promote dementia caregivers' acceptance and empathic responding towards care -recipients

School Graduate School

Degree Doctor of Philosophy

Degree Program Psychology

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag Gerontology,OAI-PMH Harvest,Psychology, clinical

Language English

Contributor Digitized by ProQuest (provenance)

Advisor Gatz, Margaret (committee chair), Earleywine, Mitchell (committee member), Henderson, Victor (committee member), Knight, Bob G. (committee member), Seeman, Teresa (committee member)

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c16-116513

Unique identifier UC11337739

Identifier 3037897.pdf (filename),usctheses-c16-116513 (legacy record id)

Legacy Identifier 3037897.pdf

Dmrecord 116513

Document Type Dissertation

Rights Kasl-Godley, Julia Elizabeth

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the au...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus, Los Angeles, California 90089, USA