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Communication and home-based interventions in Alzheimer’s disease -- a review

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COMMUNICATION AND HOME-BASED INTERVENTIONS IN

ALZHEIMER’S DISEASE—A REVIEW

by

Randi Schnur Jones

________________________________________________________________

A Thesis Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF ARTS
(PSYCHOLOGY)

August 2009

Copyright 2009 Randi Schnur Jones

ii
Table of Contents

List of Tables iii

List of Figures iv

Abstract v

Introduction 1

Chapter 1: Communication and AD 4

Chapter 2: Psychosocial Aspects of Communication Problems in AD 13

Chapter 3: Interventions to Improve Communicative Interactions Between 36
Individuals With AD and Their Caregivers

Chapter 4: Conclusions 62

References 65

iii
List of Tables
Table 1: Types and Interpretations of Communicative Behaviors 15
Table 2: Summary of Interventions 43

iv
List of Figures
Figure 1: Communicative Behaviors and Their Management 19

Figure 2: Typical Causes of Communication Breakdowns 37

v
Abstract
Communication is a basic human need, and communication problems are endemic
among individuals with Alzheimer's disease (AD), with specific problems common at
each stage of the disease. Because the majority of individuals with AD reside with family
caregivers in the community, evidence-based interventions to improve communications
between the members of these dyads, whose needs differ from those of individuals living
in long-term care facilities with professional caregivers, are essential. This paper
discusses typical communication changes and difficulties that arise during the course of
AD and their psychosocial ramifications for both caregivers and care recipients. It also
reviews nine studies of evidence-based interventions involving community-residing
dyads and finds that key attributes required for success are caregiver education,
individualization, and practicality.

1
Introduction
Communication is recognized as a “basic human need” (Kaakinen, 1995), with
impairment likely to lead to isolation, both physical (Barton, Findlay, & Blake, 2005) and
psychological (Anderson, 2001; Kenefick, 2004; Prince, Harwood, Blizard, Thomas, &
Mann, 1997). Aloïs Alzheimer (1907) cited language difficulties as a primary symptom
of Alzheimer’s disease (AD), and speech impairment is among the accepted criteria for
diagnosis of the disease (American Psychiatric Association, 2000; World Health
Organization, 2007). Even in normal aging, changes in language and discourse are
associated with reduced social participation and may lead to social isolation, which has
been shown to be a predictor of morbidity and mortality in older adults in general
(Cruice, Worrall, & Hickson, 2005).
Communication problems resulting from AD are believed to occur in 88-95% of
individuals with the disease (Thompson, 1987). With loss of cognitive function come
difficulties with learning, performing activities of daily living, interacting with others,
and regulating behavior, all of which contribute to decreases in communicative ability
(Bayles et al., 2005). Such problems begin early in the course of AD and often precipitate
the removal of affected individuals from their homes to long-term care facilities (Morriss,
Rovner, & German, 1996; Steele, Rovner, Chase, & Folstein, 1990), which may further
exacerbate difficulties interacting with others (Kaakinen, 1995; Lubinski, 1995).
A recent survey of individuals diagnosed with AD estimated that more than half
live at home (American Geriatrics Society, 2008), and the percentage of people with AD
who are cared for primarily by spouses or other family members is believed to be

2
approximately 90% (Alzheimer’s Association & National Alliance for Caregiving, 2004).
Therefore, interventions designed to maximize the potential for meaningful interpersonal
interaction while the person with AD resides at home would appear to be extremely
valuable. Yet despite the fact that studies involving language and communication in AD
have been performed by experts in the fields of psychology, psycholinguistics,
psychiatry, neuroscience, social work, nursing, and speech and language pathology, there
are few published reports of empirically tested interventions designed to enhance
communication between AD care recipients and their caregivers, and even fewer
conducted with community-residing individuals and their family caregivers. Availability
of such interventions will become critically important as the number of individuals with
AD continues to rise, putting more pressure on their family members, healthcare
providers, and long-term care facilities to cope with the effects of the disease.
Much of the existing literature with respect to communication problems, their
effects, and their management has appeared in publications that are not typically read by
psychologists, whose expertise is likely to be sought by those bearing the brunt of these
problems. Moreover, much of it focuses on residents of long-term care facilities, whose
communication-related problems are not identical to those experienced by individuals
residing at home. For all of these reasons, a review of evidence-based interventions that
provide guidance and support to informal (i.e., non-professional and non-institutional)
caregivers and their care recipients with AD may be particularly appropriate today.
The concerns of this paper are threefold. The first chapter briefly reviews the
essential characteristics of verbal and non-verbal communication in general, and

3
discusses how these characteristics are affected by AD. In the second chapter, the nature
and psychosocial ramifications of communication problems in AD are examined, as well
as their manifestations in, and effects upon, both individuals with AD and their family
caregivers. (It should be noted that, although the caregiver is likely to be most profoundly
affected by these problems, they also are likely to have a negative impact on relationships
with friends and other non-healthcare professionals with whom the individual comes into
contact.) The characteristics that distinguish communication issues, and thus effective
interventions, used in the community context from those typically employed in
institutions also will be outlined in this section.
The third chapter examines interventions that have been developed primarily for
the purpose of managing communication problems of community-residing persons with
AD. After a brief overview of communication-enhancing interventions in general, this
section will focus on those aimed primarily at either community residents with AD or
their informal caregivers.

4
Chapter 1: Communication and AD
What Is "Communication"?
The term “communication” encompasses verbal and non-verbal behaviors,
including (but not limited to) speaking, gestures, pantomime, listening, reading, and
writing (Bayles et al., 2005), that are intended to transmit information. “Language,” an
integral component of communication among humans that has been described as “the
preeminent trait” of the species (Pinker, 1994), may be defined more specifically as a
“system of codes evolved for the purpose of communication,” with rules governing the
processing and integration of units having a variety of forms and relations to each other
(Emery, 2000).
A language system consists of “semiotic categories” that may be organized
hierarchically with respect to complexity of processing (Bourgeois, 2002; Emery, 2000).
These include phonology, which deals with the sounds that combine to produce speech;
morphology, referring to the smallest units—words or parts of words—that constitute the
lexicon or vocabulary of a given language; syntax, governing the combination of those
morphemes into phrases, sentences, and a grammar; and semantics, by which they are
grouped together to form meaning understandable to others (Bourgeois, 2002).
Linguistics researchers generally consider these functions to be uniquely human,
regardless of the mode of transmission (Tserdanelis & Wong, 2004).
A fifth classification, pragmatics, refers to the expression and comprehension of
intended meaning according to implicit rules (Hays, Niven, Godfrey, & Linscott, 2004),
i.e., the appropriate use of language in context (Ulatowska & Olness, 2007). The

5
functional approach to language places pragmatics at the heart of the language system,
with “communicative competence” more fundamental than the “linguistic competence”
defined by syntactical and semantic abilities (Ripich, 1994, p. 95). Rather than the
manipulation of signs and symbols, pragmatics encompasses the implements of effective
communication such as taking turns, listening, forming and delivering appropriate
responses, and language choice and code-switching in bilingual speakers, all of which
play integral roles in organizing information to satisfy needs and expectations of others in
conversation (Landa, Swartz, & Folstein, 1993). Some pragmatic devices, such as turn-
taking, survive more or less intact until late in the progress of the disease, allowing the
speaker to maintain a veneer of normalcy in social intercourse, while others (e.g., the
ability to produce relevant information and to organize information coherently) are lost in
earlier stages (Hays et al.; Ripich, Vertes, Whitehouse, Fulton, & Ekelman, 1991). All of
these devices facilitate performance of the main functions of communication, which
include expression of the individual’s wants and needs, exchange of information, and
achievement of social goals (e.g., establishing and maintaining social relationships,
promoting etiquette) (Bourgeois, 2002).
Language production in AD is characterized by deficiencies that can interfere
with or prevent the transfer of information that defines communication even while
appearing to conform in many ways to the conventions of normative speech (Bourgeois,
2002). On the other hand, although the individual with AD will lose the ability to
maintain many of these conventions, communication by and with that person may
continue to occur beyond the point at which normal conversation becomes impossible

6
(Astell & Ellis, 2006). Such communication is fraught with difficulties in both
transmission and interpretation, which may vary with the environment (e.g., institutional
vs. home) and the role of the non-impaired party (e.g., spouse vs. nursing home staff
member) as well as the progress of the disease and degree of resulting cognitive
impairment.
Stage-related Language Changes in AD
Although the disease's course has been described as comprising a number of more
or less distinct stages (e.g., Braak & Braak, 1991 [6 stages]; Reisberg, 1988 [16 stages
and sub-stages]), symptoms of AD typically are viewed in the context of three stages of
impairment: mild or early-stage, moderate or middle-stage, and severe or late-stage. Each
of these is accompanied by characteristic language-related deficits reflecting the
combined effects of impairment of several cognitive functions (Bayles & Tomoeda,
1991; Bschor, Kühl, & Reischies, 2001; Kemper, Thompson, & Marquis, 2001), although
there is considerable variability at each stage, both among and within individuals with the
disease (Kempler, Andersen, & Henderson, 1995; Kim & Bayles, 2007; Normann,
Asplund, Karlsson, Sandman, & Norberg, 2006; Shue, Byers, & Graham, 2005).
Both researchers (Taler & Phillips, 2008) and caregivers of individuals with AD
(Kemper, Anagnopoulos, Lyons, & Heberlein, 1994) frequently identify difficulty with
language as an early indicator of AD. In a study of verbal language abilities in adults with
early-stage (very mild to mild) AD, Lyons and colleagues (1994) concluded that
“psycholinguistic changes may be a subtle but reliable marker of the onset” of the disease

7
(Lyons et al., p. 280). Some researchers have observed the emergence of symptoms of
language impairment prior to that of memory problems (Bayles & Tomoeda, 1991).
In a study of 59 asymptomatic individuals with either the APOE-4 allele, which is
believed to account for as much as 50% of the risk of developing the disease (Ashford &
Mortimer, 2002), a family history of AD, or both, Miller and associates (2005) found that
participants with both risk factors performed significantly worse at baseline on a test of
object naming than did either those with only one risk factor or controls with neither. At
follow-up two years later, however, those with either one of the two risk factors had
significantly lower scores than did the controls. Semantic fluency as measured by an
animal naming test was also significantly worse at baseline for participants with the
APOE-4 allele (but not for those with only a family history of AD), although this
difference disappeared at follow-up. Thus, the authors concluded, difficulties with object
naming and semantic fluency may be preclinical markers for AD, especially when
experienced by individuals with a genetic risk of developing the disease.
Anomia, difficulty following or conducting extended conversations, repetition,
and digression become apparent early in the progression of AD (Kemper et al., 2001).
Discourse begins to be characterized by so-called “empty speech,” with high fluency but
low propositional content (Kemper et al., 1993). At the same time, awareness of
communication problems declines (Kempler, 1991), although individuals in the early
stage of the disease request (and successfully process) more repairs of conversational
problems from their discourse partners than do those with middle-stage AD, who are
more likely both to create such problems and to attempt repair themselves (Orange,

8
Lubinski, & Higginbotham, 1996; Ripich, 1994). Ability to understand speech that is
rapid, complex, or abstract, or that occurs in noisy or distracting environments,
diminishes (Goldfein, 2007). Episodic memory, remembering information linked to a
specific event and period of time, is significantly impaired at this stage (Small & Perry,
2005), which accounts for the fragmented, discursive nature of conversation (Bayles,
2001). Declining episodic memory also may be a cause of the repetitive talk (especially
questioning) that is frequently seen among individuals within the first two years
following diagnosis (Hwang, Tsai, Yang, Liu, & Ling, 2000). Semantic memory, or
general knowledge of the world independent of time (Small & Perry), is largely preserved
in early-stage AD (Kemper et al., 2001), although there is some disagreement on this
point (Small & Perry), and pragmatics and most semantic aspects of language (e.g.,
grammar, syntax) remain intact as well (Ripich, Fritsch, Ziol, & Durand, 2000; Kemper
et al., 1994).
Compensatory pragmatic aspects of language such as circumlocutions and stock
or “generic” phrases (Kertesz & Kertesz, 1988; Ripich et al., 2000), or stilted language
that sounds learned “by rote” (Orange, 1991), appear in the conversation of individuals
with AD at this stage (Bschor, Kühl, & Reischies, 2001), preserving the appearance of
competence in an attempt to maintain effective communication for as long as possible.
There is frequent use of indefinite terms and “neighboring” words (Kertesz & Kertesz).
The ability of those with early-stage AD to “fake” normal abilities much of the time
frequently results in denial on the part of family members that any cognitive problem
exists (Shue, Byers, & Graham, 2005).

9
Middle-stage, or moderate, AD is marked by a reduction in grammatical
complexity and syntactic range and diversity (Bates, Harris, Marchman, & Wulfeck,
1995), with further decreases in propositional content but without noticeable reduction in
length of sentences (Kemper et al., 2001). There is worsening anomia, with more obvious
word-finding problems (both nouns and verbs), poor topicality, and reference problems,
especially with respect to use of pronouns. Increased social withdrawal may be observed
alongside decreased awareness of communication problems, insensitivity to listener
requirements, and inability to respond appropriately to requests for clarification
(Kempler, 1991), as well as deterioration of the ability to self-monitor speech errors
(Obler, deSanti, & Goldberger, 1991). Bilingual individuals with AD may begin to
exhibit inappropriate language choice and code-switching problems at the moderate-to-
severe stages (Obler et al.). Speech production problems at this stage of the disease have
been likened to those seen in patients with Wernicke’s aphasia (Kertesz & Kertesz,
1988), which is characterized by normal grammar, syntax, intonation, and rate of speech,
as well as anomia (Henderson, 1983; Ryan, Giles, Bartolucci, & Henwood, 1986;
Wernicke, 1908); they are less likely to resemble the symptoms of Broca’s aphasia
(Kempler, 1991), in which language is agrammatical and non-fluent, featuring disjointed
words without such crucial sentence elements as function words and inflections
(Henderson), although the similarity of AD speech to Broca’s aphasia grows stronger as
the disease progresses (Hier, Hagenlocker, & Shindler, 1985).
In later, more severe stages of AD, speech consists primarily of short, repetitive,
high-frequency phrases and fragments (Kemper et al., 2001). Paraphasias (e.g., wrong

10
words, or words and sounds grouped together in meaningless combinations), lack of
coherence, dysarthria (a motor speech disorder resulting in problems with articulation
including slurred speech), echolalia (repetition of vocalizations made by others), and
palilalia (repetition of one’s own words or phrases) are common (Kempler, 1991; Lezak,
Howieson, & Loring, 2004; Obler & Albert, 1980; Ripich, 1994). People with severe AD
may be left with the ability to speak only a word or two (Orange, 1991; Reisberg, 1988),
ultimately regressing to muteness (Au, Albert, & Obler, 1988). Difficulties with motor
functions of language and with syntax (e.g., agrammatical speech) typically do not
become apparent until well into the late stage (Kempler). Even at this stage, however, the
individual may continue to initiate social contact and respond to conversational probes,
demonstrating the impulse to communicate with others (Kim & Bayles, 2007). In one of a
series of studies investigating the use of memory aids to help severely impaired
individuals engage in discourse about their personal lives and histories, Bourgeois (1992)
noted that participants derived obvious pleasure from reviewing personally relevant
information. Indeed, in 15-minute conversations with people with severe AD, Mayhew
and associates (2001) carried on “meaningful communicative interactions” in which
participants with Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh,
1975) scores as low as 4 demonstrated ability to share personal information, capacity for
humor, and even self-awareness (Mayhew, Acton, Yauk, & Hopkins).
The progression of language decline in AD appears to be negatively associated
with that of early language development: in children, those language forms that are most
complex are learned last, and also are lost first by people in earlier stages of the disease

11
(Emery, 2000), as predicted by the retrogenesis model proposed by Reisberg and
associates (1999a; 1999b; Rogers & Arango Lasprilla, 2006). In a study of the prevalence
and order of appearance of linguistic symptoms reported by the primary caregivers of 99
AD care recipients across the spectrum of disease severity, Bayles and Tomoeda (1991)
found that five symptoms (out of 16 observed by at least some caregivers) were
associated with disease severity, four of which—inappropriate speech, failure to
recognize humor, incomplete sentences, and especially a tendency to produce
meaningless sentences—were aspects of verbal language production, as were two of the
three most prevalent symptoms, word-finding and object-naming problems. In a study of
30 individuals at different stages of dementia, Cummings, Benson, Hill, and Read (1985)
found symptoms of aphasia in every participant.
As noted above, individuals with AD display a wide range of abilities across all of
these stages. Moreover, a person with the disease may make consistent errors (probably
as a result of disorganization or loss of specific semantic knowledge) or inconsistent ones
(most likely arising from attentional problems) at different times (Kempler, Andersen, &
Henderson, 1995). Language ability may vary from moment to moment, with brief
episodes of lucidity during which meaningful and appropriate communication occurs
even in severe cases (Normann, Asplund, Karlsson, Sandman, & Norberg, 2006; Shue,
Byers, & Graham, 2005). In bilinguals, the ability to translate from one language to
another may survive the loss of ability to monitor other aspects of speech production
(Obler, deSanti, & Goldberger, 1991) or be lost altogether (Runci, Doyle, & Redman,
1999). A sense of humor may be preserved well into the disease process (Witte, 1987;

12
Wilson, Müller, & Damico, 2007); in one case study, a woman with moderately severe
AD retained the ability to pun (Hawkins & Graff-Radford, 2007) even as her linguistic
capability declined in other respects. Another woman with late-stage AD used laughter as
a conversational strategy which, according to researchers, served to increase feelings of
involvement and competence by drawing and holding her listener’s attention (Wilson,
Müller, & Damico). Variables hypothesized to account for this heterogeneity in abilities
include the rate of deterioration, cerebrovascular pathology, cognitive reserve, and the
individual’s personal interests and experiences (Kim & Bayles, 2007), as well as the
degree to which his or her physical and social environment is structured to enhance
remaining language abilities (Lubinski, 1991a; Witte).
Examining the use of coverbal gestures (iconic gestures with established and
generally understood semantic content) among individuals with AD, Carlomagno and
colleagues (2005) found that their rate of gesture use was similar to that of cognitively
normal older adults. However, the proportion of gestures with recognizable semantic
content was significantly lower than that of cognitively normal controls. Thus, the
researchers concluded that as the information content of AD speech diminishes, so does
the ability to compensate effectively through the use of “content-bearing” gestures.

13
Chapter 2: Psychosocial Aspects of Communication Problems in AD
Communication and Behavioral Symptoms of AD
Behavioral symptoms generally are among the most difficult aspects of AD to
manage, and the most distressing for both caregivers and individuals with AD
themselves. Approximately 90% of people with AD exhibit behavioral symptoms at some
point in the progression of the disease (De Deyn, 2005), and they are recognized as a
primary reason for institutionalization (Gilley et al., 2004; Yaffe et al., 2002). They also
have been found to be major contributors to excess disability (Conn & Thorpe, 2007; De
Deyn et al.), which has been defined as loss of functioning not directly attributable, and
disproportionate, to the neurological damage causing the dementia (Fenn, Luby, &
Yesavage, 1993; Yury & Fisher, 2007). Because they are particularly stressful for both
caregivers and care recipients, communication problems constitute an independent risk
factor for nursing home admission (Orange & Colton-Hudson, 1998).
Frequently perceived as inappropriate or disruptive—a characterization that
focuses on the eye of the beholder, typically a caregiver or another (usually non-
demented) nursing home resident, rather than the needs of the person engaging in the
behavior (Bourbonnais & Ducharme, 2008; Norberg, 1996)—behavioral symptoms often
are managed by means of some type of restraint, either pharmacological (e.g., neuroleptic
medications; Cariaga, Burgio, Flynn, & Martin, 1991) or physical (Werner, Cohen-
Mansfield, & Marx, 1989). However, increasing emphasis on the unique personhood of
individuals with dementia and their personal experience and sense of self (Kitwood,
1997; Ramanathan-Abbott, 1994) has led to recognition of the fact that their words and

14
actions may often be understood as expressions of their individual desires and needs,
rather than simply as symptoms of the disease process. In this context, behavioral
symptoms—both verbal manifestations such as repetitive questioning or vocalizations
and non-verbal ones including withdrawal or physical violence—could be interpreted as
communications meant to convey specific messages and to achieve particular goals
relating to unmet needs. Kitwood noted that meaning could be inferred from people’s
actions in the presence of AD, just as it could before the onset of the disease, and that “in
the course of a dementing condition a person will use whatever resources he or she still
has available. If some of the more sophisticated resources have dwindled away, it may be
necessary to fall back on ways that are more basic, more deeply learned; some of these
belong to early childhood” (Kitwood, p. 16).
The problematic and potentially disturbing nature of these behaviors often results
in the individual's needs remaining unmet while caregivers’ energies are directed toward
curtailing the behaviors themselves (Kovach, Noonan, Schlidt, & Wells, 2005). The
likely outcome of this miscommunication is further withdrawal and isolation due to
perceived inability on the part of the individual with AD to interact effectively with
others, leading to increased depression and anxiety (Cohen-Mansfield et al., 1989; see
discussion below). Thus, what Kitwood (1997) referred to as the “dialectical interaction
between neurological impairment and social psychology” (p. 20) undermines efforts to
maintain some degree of social inclusion, a basic need “without which a human being
cannot function, even minimally, as a person” (Kitwood, p. 19).

15
As noted above, a more effective and humane approach has been to view many of
these symptoms as attempts at communication by the only means available to a severely
demented person (Algase et al., 1996; Cariaga et al.), and to assist caregivers in finding
ways to interpret them (Hallberg & Norberg, 1990). The list of behaviors identified in the
literature as communicative includes a wide range of verbalizations from repetitive
requests to hallucinatory talk (e.g., “conversations” with absent people), as well as a
variety of non-verbal behaviors such as gesturing, wandering, making loud noises, and
physical aggression (Beattie, Algase, & Song, 2004; Cohen-Mansfield & Werner, 1997;
Kempler, 1991; Pulsford & Duxbury, 2006; see Table 1). Many of these “need-driven

Table 1: Types and Interpretations of Communicative Behaviors

Behavior Explanation/Interpretation

General (undefined) needs Disruptive calls for attention, hallucinatory talk
1

Imitative behaviors Desire to maintain and prolong social interaction
2

Noisemaking/Shouting Discomfort; need for sensory stimulation (especially when
individual is often left alone)
3

Physical aggression Desire for autonomy, perceived need for self-protection
4,

5
;
pain
6

1
Cohen-Mansfield & Werner (1997).

2
Astell & Ellis (2006).

3
Algase et al. (1996).

4
Talerico & Evans (2000).

5
Welsh, Corrigan, & Scott (1996).

6
Smith & Buckwalter (2005).

16
Table 1, Continued

Repetitive verbalizations Memory loss
7

Screaming Pain, discomfort, stress, unmet needs
8, 9
; anxiety (especially
fear of abandonment)
10
; social isolation (e.g., physical
restraint, confinement to own room)
11
; lack of visual
stimulation
12

Talking or singing loudly Pain, hunger, bedtime; need for self-stimulation
13

Verbal aggression Depression
14

Wandering Desire for social interaction
15

dementia-compromised behaviors” (Kolanowski, 1999) have come to be understood as
requests for satisfaction of unmet needs, mediated by the effects of AD (Kovach et al.,
2005). Thus, behaviors that may fall outside the conventional definition of direct
communication nevertheless may constitute an individual’s only available means of
expressing a need or desire. Wandering, for example, has been interpreted as a search for
opportunities for social interaction and stimulation (Beattie et al.), and physical

7
Algase et al.

8
Weiner, Peterson, & Keefe (1999).

9
Bourbonnais & Ducharme (2008).

10
Hallberg & Norberg (1990).

11
Cohen-Mansfield, Werner, & Marx (1990).

12
Bourgeois, Burgio, Schulz, Beach, & Palmer (1997).

13
Cohen-Mansfield & Werner.

14
Menon et al. (2001).

15
Beattie et al. (2004).

17
aggression as an expression of pain (Smith & Buckwalter, 2005) or frustration caused by
impairment of the ability to express oneself or to comprehend communicative behaviors
of others (Welsh et al., 1996). Screaming may indicate anxiety, which may be tied to both
understimulation and to a chaotic, frightening, or over-stimulating situation or
environment (e.g., a nursing home at mealtime or a bath given by an unrecognized staff
member), in addition to fear (perhaps at being undressed by an aide at bath time) or
simply the need to urinate (Barton et al., 2005; Bourbonnais & Ducharme, 2005; Smith &
Buckwalter). Cohen-Mansfield and colleagues (1990) have demonstrated that screaming
by nursing home residents is associated with cognitive impairment, severe impairments in
performance of basic activities of daily living, inadequate social networks, and depressed
affect (Cohen-Mansfield et al., 1990). They also found that residents tended to scream
more frequently when left alone in their rooms in the evening, which they interpreted as
response to social isolation. Other researchers have linked screaming and other such
vocalizations among nursing home residents to boredom (Barton et al., 2005; Hallberg &
Norberg, 1990) and to anxiety, particularly with respect to fear of abandonment.
Such behaviors almost inevitably attract attention, although the likely result is
confusion and distress for both parties involved in the exchange rather than satisfaction of
the needs of the individual with AD. Careful observation and sensitivity on the part of the
caregiver combined with sufficient knowledge and training are essential to crafting an
appropriate and beneficial response.

18
Reaction of Others to Communication Problems
Communication problems may be both a symptom and a cause of psychological
distress for the person with AD and his or her caregivers. As progressive decline in
speech, language, and other cognitive abilities causes communication by and with the
care recipient to deteriorate, the attempts of even the best-intentioned caregiver to adjust
to the changing circumstances may exacerbate the problem. Thus, communication
breakdowns become more frequent and unmanageable, and parties on both ends of an
attempt at meaningful communication suffer from feelings of frustration and inefficacy.
Figure 1 illustrates typical causes of these breakdowns at three stages of AD.

Denial
Just as a substantial percentage of family members of people with AD fail to
recognize or acknowledge cognitive symptoms until behavioral and psychiatric
disturbances become inescapable (Eustace et al., 2007), it is also common for family
members to overlook or deny deteriorating communication abilities until their relatives’
speech becomes nearly uninterpretable (Bourgeois, 2002). And although many caregivers
are sensitive to the communication problems of their relatives with AD and the symptoms
its breakdown, they also are likely to misunderstand and misattribute these symptoms
(Epstein, Auclair, & Mittelman, 2006; Ripich, 1994). Individuals in the earlier stages of
the disease may produce seemingly comprehensible statements that family and friends
often assume may be taken at face value. This assumption precludes effective
communication, as literal interpretation of these utterances is most likely to precipitate

19

Figure 1: Typical Causes of Communication Breakdown in AD

Early-stage AD Early- to Middle-stage AD Late-stage AD
Pragmatically correct but empty “Testing” questions asked by CG to determine Incoherent speech and
(Kemper et al., 1983), fragmented extent of memory and/or language impairment verbalizations, non-verbal
(Bayles, 2001), repetitive (Shue et al., (Bourgeois, 1992; Epstein et al., 2006) communicative behavior
2005) statements and questions (Kempler, 1991)

CG’s and others’ misinterpretation of
statements made by person with AD
(Bourgeois, 2002) Perceived threat of failure Failure of CG to recognize
and loss of face by PWAD behavior as communicative
(Small & Perry, 2005) (Haak, 2002)

Frustration and withdrawal (by person with
AD), confusion and anger (on part of CG)
at “deliberately” annoying behavior
(Bourgeois, 2002)

COMMUNICATION BREAKDOWN

20
anger and frustration on the part of the misunderstood speaker, anger and confusion in a
caregiver who may conclude that the person with AD is being deliberately annoying or
insulting, and increased stress on both sides (Bourgeois).

Accommodation
Some researchers have observed that informal caregivers and other conversational
partners without professional support and guidance rarely make the lexical, syntactic, and
pragmatic modifications in their own speech that might facilitate communication with the
partner with AD (Clark & Witte, 1991). However, others have reported that many
spouses and other caregivers of those with AD make accommodations in an attempt to
facilitate meaningful communication with their relatives (Kemper et al., 1994; Small &
Perry, 2005) regardless of whether or not they understand the extent of their care
recipients’ language difficulties. Speech accommodation theory, which holds that
speakers' styles tend to "converge" with those of their conversational partners as they
attempt to form communicative connections (Ryan, Giles, Bartolucci, & Henwood,
1986), suggests that communication accommodations may be positive, involving
appropriate modification of one's speech (or other mode of communication) to suit their
partners' needs, or they may be negative when triggered by unflattering stereotypes
(Giles, Coupland, & Coupland, 1991). In the case of older adults (demented or
otherwise), such stereotypes may lead younger communication partners to
overaccommodate through the use of patronizing and infantilizing speech (Hummert,
Shaner, Gartska, & Henry, 1998; Kemper, Ferrell, Harden, Finter--Urczyk, & Billington,

21
1998; Ryan et al.; see below).
In a study of family members’ perspectives on changes in their relatives’
communication behaviors, Orange (1991) found that the strategies most often used by
participants entailed controlling or altering their own communication styles to encourage
verbal interaction. These strategies included use of nonverbal communication, simple
vocabulary and syntax, slow and detailed explanations, and short sentences with reduced
information content, supplying missing words, controlling conversation topics, speaking
for their relatives with AD, ignoring verbal problems, distracting their relatives when
conversational problems arose, using time-outs, and (perhaps most important) not showing
impatience or frustration. Of these approaches, distraction, time-outs, and patience were
found to be both most commonly employed and most useful for caregivers attempting to
improve comprehension on the part of their conversational partners with AD (Orange).
Other researchers also have reported the use by caregivers of compensatory
strategies in the form of prompts, cues, and reduction in sentence complexity, among others
(Kemper et al., 1994; Small & Perry, 2005). Caregivers who recognize the need for such
supportive accommodations and can adjust their behavior accordingly may succeed in
maintaining more satisfying interpersonal relationships with their loved ones (Epstein et al.,
2006; Kemper et al., 1994; Orange, 1991; Shue et al., 2005), in large part by helping to
preserve their capacity for involvement, and thus their dignity and humanity (Phinney,
2002).

22
Effects on the Individual With AD
As noted by Kitwood (1997), “unhelpful” responses of others to behavioral
changes resulting from dementia often result in a loss of personal resources in the person
with AD. The resulting withdrawal and isolation are a major cause of loneliness and
depression in these individuals (Cohen-Mansfield et al., 1989; Erber, 1994). People in the
early stages of the disease have reported that the reactions of others to errors in their
speech may be their first indication that they are, indeed, beginning to experience
communication problems. As one woman put it, “I saw that look that said to me, ‘Well,
she’s off the track’” (Phinney, 2002). This awareness, on the part of both the individual
with AD and others with whom he or she may speak, is likely to result in continual
scrutiny of the person’s speech errors for indicators of the disease process and his or her
devaluation as a potential conversational partner (Shakespeare & Clare, 2005). Such
experiences may lead people with even mild AD to believe that they are better off
withdrawing from social interactions in order to avoid contacts with cognitively normal
others that require them to confront their disabilities directly.
Even caregiver discourse patterns intended to serve as communicative
accommodations as discussed in the previous section, rather than facilitating
communication, may damage self-esteem in the individual with AD and reduce social
interaction. The infantilizing communication often referred to as elderspeak, similar to
baby talk in its use of elevated pitch and intonation, simplified vocabulary, use of
diminutives, and inappropriate use of the pronoun “we” in place of “you” (as in “how are
we today, honey?”) (Caporael, 1981; Kemper, 1994), threatens the maintenance of

23
linguistic and cognitive abilities, as well as the individual’s concept of self (Cunningham
& Williams; deBott & Makoni, 2005). In addition, elderspeak often increases resistance
to care (Cunningham & Williams, 2007; Williams, Herman, Gajewski, & Wilson, 2008).
Caregivers’ questions requiring recall of recent events that focus attention on their
partners’ memory loss and other aspects of cognitive decline are likely to have a similarly
damaging effect, and have been observed to lead to overaccommodation by caregivers
seeking to encourage communication (Small & Perry, 2005). Even a cognitively intact
spouse’s corrections, additions, and other forms of conversational repair intended to add
meaning to AD talk may deprive the speaker of control of his or her own narrative and,
thus, the opportunity to do more than “recognize the event” that is its subject
(Ramanathan-Abbott, 1994, p. 55 [italics in original]).
Eventually, the recipients of such well-intentioned treatment may come to rely on it
whenever possible, especially in order to avoid difficult or uncomfortable situations by
deferring to spouses or other close relatives who will “cover” for them (Shue et al., 2005).
This reliance may have negative consequences in itself: when it reduces the need for
effective self-directed communication by the individual with AD to such an extent that
linguistic ability is allowed to deteriorate further, the result is learned helplessness
culminating in a “cycle of incompetence” that may be impossible to escape (Lubinski,
1991b).
Lack of effective communication presents more practical problems as well,
especially with regard to obtaining appropriate healthcare. Actual or perceived inability
of patients with AD to report health problems to care providers (at least in a manner

24
likely to be interpreted correctly) may result in inadequate or inappropriate treatment for
both psychological and physical disorders (Algase et al., 1996; Barton et al., 2005;
Lubinski, 1991a). However, caregivers tend to misinterpret or ignore behaviors that
signal pain (Weiner et al., 1999); thus, pain management, which depends heavily on
patients’ subjective reports, may be ineffective or nonexistent (Cunningham, 2006;
Kovach et al., 2005). Even experienced nurses and staff members with specialized
training in pain assessment were found to recognize pain-related behaviors less often in
nursing home residents with higher levels of cognitive impairment than in those less
severely impaired (Wu, Miller, Lapane, Roy, & Mor, 1995), although persistent pain due
to chronic conditions affects a majority of all nursing home residents and is no less
common in the former group than the latter (Weiner et al., 1999; Wu et al.). Although
their study found low rates of caregiver-resident agreement with respect to pain ratings,
Weiner and colleagues observed a high degree of confidence among both formal and
informal caregivers in the accuracy of their own ratings. Notably, caregiver
misperception of pain in their care recipients whose ability to report it themselves has
been compromised by AD is associated not only with impaired quality of life for the
sufferer, but also with increased caregiver strain (Miaskowski, Zimmer, Barrett, Dibble,
& Wallhagen, 1997).
The presence of a family member during a visit to the primary physician’s office
by a patient who previously arrived unaccompanied may be a signal to the physician that
AD screening is warranted (Holmes & Adler, 2005). However, proxy reports by family or
professional caregivers and other relatives based on their observations of care recipients’

25
care preferences, quality of life, and other issues also tend to vary considerably from the
recipients’ self-ratings even in the early stages of AD (Carpenter, Kissel, & Lee, 2007;
Teri & Wagner, 1991), and are likely to become less accurate with the progression of the
disease. In a study by Bourgeois, Dijkstra, and Hickey (2005), nursing home staff
members who had not received training designed to improve the quality of their
communicative interactions with residents with AD tended to overreport depression
significantly in those residents who talked less and exhibited more problem behaviors.
Even after the intervention ended, staff members reported more depression among
residents than did the residents themselves (Bourgeois et al.; Teri & Wagner, 1991).
Thus, lack of reliable information obtained directly from the person with AD, and
misinterpretation of behavioral signals, greatly diminishes the likelihood of receiving
effective and appropriate treatment in accordance with his or her needs and wishes as
well as quality of life for both care recipient and caregiver.
A particularly frequent and damaging example of this problem involves
recognition of sensory deficits. Impairments severe enough to interfere with normal
social interaction, including auditory impairment and uncorrected vision problems, are
common in older adults in general, with approximately 40% of all those 65 and older
affected by the former and 20% by the latter (Erber, 1994), although earlier estimates of
the prevalence of hearing loss range from 24% to 83% (Grimes, 1991). Even in the
absence of other etiologies, the resulting communication problems and concomitant
withdrawal and mental isolation may trigger symptoms that mimic dementia and lead to
the impaired person’s removal to a long-term care facility (Erber).

26
In individuals with AD, these sensory impairments are both wider ranging and
more profound than in normal aging (Grimes, 1991). Moreover, they are accompanied by
other cognitive, behavioral, and personality changes that also contribute to an inability to
interact effectively with others. People with AD are faced with obstacles to remediation
of hearing problems that are particularly difficult to overcome, including inadequate
medical response (with respect to both identification and management of the problem),
belief that testing will be inordinately difficult with such patients, use of inappropriate
technology, and lack of data supporting the efficacy of medical intervention (Palmer,
Adams, Bourgeois, Durrant, & Rossi, 1999).
Poor communication between individuals with AD and their caregivers also has
been found to be an important risk factor for abuse of the former by the latter (Reay &
Browne, 2001). In a survey of 43 caregivers who admitted engaging in abusive behaviors,
communication problems in care recipients, particularly those involving verbal
perseveration, were cited most frequently as precipitating factors (Cooney, Howard, &
Lawlor, 2006).

Effects on the Caregiver
An unfortunate side effect of withdrawal and apathy on the part of AD care
recipients is caregiver stress, to which these behaviors have been found to be significantly
related (Rau, 1991). Family members of individuals with AD surveyed with respect to
communication problems they experienced with their relatives cited frustration as a
common reaction of their own to attempts at communication, and repeatedly complained

27
of loneliness, guilt, embarrassment, and social isolation as consequences of deteriorating
relationships with their partners. At the same time, the cognitively normal participants in
the study were aware of the detrimental effects of their own evident impatience and
frustration on the abilities of those with AD (Orange, 1991). Given the effort required to
hide these feelings and the prospect of even more distress if they express them, the
prevalence among family caregivers of depression and other symptoms of stress (Cohen
& Eisdorfer, 1988) is hardly surprising.
Loss of the ability to communicate with relatives with AD is high on the list of
family caregivers’ stressors, with many primary caregivers citing it as among the most
distressing aspects of the disease (Gallagher-Thompson, Dal Canto, Jacob, & Thompson,
2001; Greene, Smith, Gardiner, & Timbury, 1982; Rau, 1991; Ripich, 1994). Spouse
caregivers face a peculiar dilemma that Lubinski (1991a, p. 262) summarized as follows:
“What does a wife talk about with a husband who does not recognize her or whose
comments are disjointed and inappropriate?”

Communication Problems and Caregiver Burden
Caregiver burden has been defined as the perceived impact of caregiving tasks on
the resources of the caregiver, whether subjective (e.g., stress) or objective (e.g., loss of
privacy and financial security) (Savundranayagam, Hummert, & Montgomery, 2005).
Behavioral symptoms of AD in general are major predictors of caregiver burden, which is
likely to increase as such symptoms worsen over time (Devor & Renvall, 2008). As
language ability declines, communication problems mediate the relationship between the

28
cognitive and behavioral status of the person with AD and the disease’s behavioral and
psychological manifestations; in turn, those symptoms also act as mediators between
communication problems and caregiver burden (Savundranayagam et al.). Spouses of
individuals whose language abilities have been impaired as a result of AD also find
themselves deprived of a familiar, perhaps crucial, source of emotional support that
coincides with the increase in social isolation as caregiving duties become more extensive
and time-consuming. This lack of reciprocal support from the impaired individual further
raises the level of perceived burden, as well as the degree of threat to caregiver well-
being (Russo & Vitaliano, 1995; Wright & Aquilino, 1998).

Stress and Psychological Morbidity
The association between caring for a relative with AD and development (or
exacerbation) of psychopathology is well established. Indeed, Russo and colleagues went
so far as to define “stress” in itself as “caregiving for a family member with AD or
another dementing illness” (Russo, Vitaliano, Brewer, Katon, & Becker, 1995, p. 197;
Vitaliano, Russo, Young, Teri, & Maiuro, 1991). This is especially true for those residing
with their care recipients (Cohen & Eisdorfer, 1988), who devote an average of three-
fourths of their time to caregiving (Aguglia, Onor, Trevisiol, Negro, Saina, & Maso,
2004) and frequently bear the responsibility of being the primary, round-the-clock social
partners of family members with AD (Lubinski, 1991a) in addition to the daunting
variety of other duties they are called upon to perform (Aguglia et al.; Rau, 1991). One
study of caregivers with a history of depression or anxiety-related disorders prior to the

29
onset of AD in their spouses (Vitaliano et al.) found that a recurrence of the illness was
significantly more likely than in non-caregiving controls with similar psychological
histories.
Both depression and anxiety are prevalent among AD caregivers, as are physical
manifestations of psychological stress such as sleep problems, decreased immune
function, increased risk of illness, and self-reported decline in physical health (Caswell,
Vitaliano, Croyle, Scanlan, Zhang, & Daruwala, 2003; Damjanovic et al., 2007;
Gallagher-Thompson, Haley, Guy, Rupert, Argüelles, Zeiss, et al., 2003). The chronic
stress of caregiving also has been linked to impaired cognitive functioning in caregivers
themselves relative to non-caregivers (specifically, low rates of information processing
speed and complex attention), leading to more difficulty with performance of care-related
and non-care-related tasks, and further increases in stress (Caswell et al.).
Moreover, Pearlin and associates (1983; 1990) concluded that relational
deprivation—“the sheer dramatic and involuntary transformation of a cherished
relationship” (Pearlin, Mullan, Semple, & Skaff, 1990, p. 584)—constitutes a primary
stressor that can lead to depression, anxiety, irascibility, and cognitive disturbance.
Studies of life events likely to result in depression have demonstrated that major personal
loss (a key stressor experienced by caregivers, as noted in the previous section) is the
most important precipitant of the disorder (Brown & Harris, 1978; Pearlin, Lieberman,
Menaghan, & Mullan, 1981). Thus, it is not surprising that higher levels of psychological
morbidity in spousal caregivers of people with dementia have been found to be an

30
independent predictor of institutionalization for the recipients of their care (Searson,
Hendry, Ramachandran, Burns, & Purandare, 2008).
In a study of 54 caregiving and non-caregiving couples (couples in which the
husband did or did not have AD, respectively), Gallagher-Thompson and colleagues
(2001) found that wives caring for their husbands reported significantly higher levels of
depression and stress than did their non-caregiving counterparts. In this context,
depression appears to be mediated by a decrease in feelings of self-efficacy: compared to
non-depressed caregivers, those exhibiting symptoms of depression have been found to
be both more likely to believe that they should have control over events related to
caregiving and more likely to perceive their situations as being out of their control
(Cohen & Eisdorfer, 1988; Gallagher-Thompson et al., 2001). Moreover, a significant
association has been found between self-perceived coping effectiveness and relational
self-efficacy, defined as caregivers’ “ability to maintain a harmonious relationship with
their relatives” (Gottlieb & Rooney, 2004, p. 371), an ability that is particularly likely to
founder as the potential for meaningful communication diminishes. When the caregiver is
the spouse of the care recipient, the former’s adjustment to the chronic illness of the latter
is affected strongly by breakdown of the care recipient’s ability to communicate, which
imposes restraints on previously established strategies for dyadic coping, the ways
couples interact when dealing with stressors (Berg & Upchurch, 2007). Even when
specific behaviors (e.g., vocalizations) are understood as attempts at communication
rather than merely as disturbing symptoms of AD, the increasing difficulty of interpreting
them when language abilities have deteriorated may result in feelings of inadequacy and

31
powerlessness in caregivers as well as in the individuals for whom they care (Hallberg &
Norberg, 1990).
The emotional toll exacted by this situation is tremendous. As the disease
progresses and the person with AD loses verbal language abilities and, eventually, even
the ability to communicate non-verbally, a spouse and other family caregivers may
experience these losses as the gradual disappearance of their loved one. A caregiver’s
emotional response to this phenomenon, which has been described variously as the
“longest goodbye” (Bourgeois, 2002), “anticipatory” or “partial” grief (Rau, 1991;
Berezin, 1970), or “extended mourning” (Frank, 2007), is an especially stressful aspect of
the disease’s later stages, often leading to a feeling of “existential isolation” that distances
family members from potential sources of support when they are most needed (Albinsson
& Strang, 2003).

Psychoeducational Needs
Discussing their work with families of cognitively impaired older adult long-term
care residents in the CONNECT (Communication Need Not Ever Cease Totally)
program, Shulman and Mandel (1988) reported that family members possessed little
knowledge or understanding of the communication problems they confronted and how to
deal with them before undergoing the educational intervention. They described
participants in their caregiver education and support program as a “desperate audience…
striving with considerable effort to establish contact with the resident” (p. 799) and to
enjoy at least a semblance of their pre-illness relationships.

32
Many other researchers also have suggested that educating and supporting
caregivers is a crucial element of any AD treatment program in general, and in
communication interventions in particular (Kempler, 1991; Orange & Colton-Hudson,
1998; Ripich, 1994). Not only are caregivers the primary providers of any prescribed in-
home treatment, they are also the most likely to benefit from its success (Kempler).
Whether a care recipient resides at home or in a long-term care facility, family members
play a vital role in enhancing the quality of life of their relatives with AD, and thus an
essential component of each resident’s support system (Shulman & Mandel, 1988).

Communication Problems in the Institutional Setting
In the years since Le Dorze and colleagues (Le Dorze, Julien, Brassard, Durocher,
& Boivin, 1994) took note of the lack of literature regarding communication
characteristics of residents of long-term care institutions with dementia, increased interest
in the topic has produced new research investigating such resident characteristics, as well
as interventions designed to alter or manage them. Indeed, most reported studies of
interventions aimed at improving communication with people with AD have been
performed in this setting, which has been described as providing few opportunities for
meaningful interaction either between residents and caregivers or among residents
themselves (Le Dorze et al., 1994; Lubinski, Morrison, & Rigrodsky, 1981).
Inasmuch as individuals with AD who exhibit inappropriate vocalizations are
likely to have entered the most severe stages of the disease, requiring assistance with
even the most basic activities of daily living (Barton et al., 2005; Cohen-Mansfield et al.,

33
1990), they also are more likely to reside in nursing homes than are those in whom the
disease has not progressed as far. Communication in this restricted environment is
“different from that in other types of settings” (Le Dorze et al., 1994, p. 243) in several
ways, including the existence of constraints imposed by staff workloads and tacit rules
discouraging residents from, e.g., talking with members of the opposite sex or, in the case
of non-demented residents, with others who exhibit symptoms of dementia (Lubinski,
1995; Lubinski et al., 1981). These constraints have a chilling effect on socializing and
communicative behavior toward, and by, those with AD.
At the same time, as Berger and Rose (1977) point out, social withdrawal on the
part of nursing home residents often benefits overburdened staff. Thus, staff members
may encourage such behavior because care duties are perceived as less difficult when
residents are quiet and passive, and who therefore may encourage such behavior. It is not
difficult to imagine how much more onerous behaviors such as repetitive questions and
statements, complaining, and cursing—one or more of which occurred at least once per
week in 20% of 211 residents of a Norwegian nursing home observed by Testad,
Aasland, and Aarsland (2007)—might make it for staff members to perform their jobs.
Interactions between institution-based caregivers and long-term care residents
may be either specific (e.g., instructions, directions, and information relating to the
institution’s procedures and rules) or generic (e.g., socializing, complaining, exchanging
more general kinds of information) (Le Dorze et al., 2000). Generic communications are
more strongly affected by the communication problems associated with AD; therefore,
specific, impersonal communications are more common in this setting, with negative

34
consequences for quality of life on both sides (Le Dorze et al.). Staff perceptions of
resident helplessness and dependence arising from this lack of high-quality, relationship-
building interaction may reinforce the tendency to focus on impersonal communications
and other stereotypical patterns of communication between residents and staff,
reinforcing residents’ dependence (Bourgeois et al., 2005; Lubinski, 1991b). Thus, a kind
of vicious cycle may be created in which low expectations on the part of both caregivers
and healthcare providers (often based initially upon low scores on standardized
measurement instruments such as the Functional Assessment Staging Test [FAST;
Reisberg, 1988], which lists language problems expected at each stage of AD) have a
negative effect on patient-caregiver communication, which in turn tends to confirm these
expectations (Kim & Bayles, 2007).
In contrast, for community-residing people with AD, communication with
caregivers and others is typically less structured and subject to different, and perhaps
fewer, constraints. Interactions between people with AD and their family caregivers are
more likely to be generic, reflecting an attempt to maintain both familiar routines and
personal relationships developed prior to onset of the disease. Although it may not appear
immediately obvious that interventions tested in nursing homes or with healthcare
professionals in, for instance, adult day care facilities would yield different results when
performed in non-institutional settings, the peculiar characteristics of the former context
suggest that they may not always be generalizable to the latter. Thus, a specific
intervention model may have different outcomes depending upon whether it is tested with
professional caregivers in nursing homes, where the “complicated medical and social

35
variables common in this [AD] population have the potential to affect treatment
outcomes” (Hoerster, Hickey, & Bourgeois, 2001, p. 425), or with family caregivers
living with a relative with AD at home (Weinrich, Jensen, & Hughes, 2006).

36
Chapter 3: Interventions to Improve Communication Between People With AD and
Others

Characteristics of Communication Interventions in General
Because behavioral symptoms of AD can be so disturbing to caregivers and
others, they historically have triggered both pharmacological and non-pharmacological
interventions that are often extremely restrictive (Cohen-Mansfield, 2001). A person-
centered approach to these symptoms requires treatments that respond to the individual's
particular unmet needs as well as the symptoms (Kovach et al., 2005) and that are
individualized, specific with respect to the behavior in question, and based on the best
available evidence (Kempler, 1991). Commonly used methods of intervention that are
either aimed directly at communicative behaviors or may indirectly affect them are
shown in Figure 2.

Behavioral Interventions
As a rule, behavioral management strategies are preferred over pharmacological
treatments for individuals with AD because of their specificity and lack of undesirable
side effects (Lyketsos et al., 2006). These often involve modifying the person’s
environment to provide either more stimulation, including opportunities for social
interaction and activities (Lyketsos et al.), or less, by reducing noise and activity (Barton
et al., 2005). Often, they obviate the need for drug treatment altogether; at the least, they
may permit use of lower dosages or shorter courses of such treatment (Cummings, 2008).

37

Figure 2: Communicative Behaviors and Their Management

UNMET NEEDS

DEMENTIA-SPECIFIC
LANGUAGE
PROBLEMS
COMMUNICATIVE
BEHAVIORAL
SYMPTOMS OF AD

EVIDENCE-BASED
BEHAVIORAL
INTERVENTIONS
(PREFERRED)
EVIDENCE-BASED
MEDICAL
INTERVENTIONS (IF
BEHAVIORAL
TREATMENTS FAIL)
NON-EVIDENCE-
BASED AND/OR
UNRECOMMENDED
INTERVENTIONS
Environmental
Accommodations
Caregiver Training
Programs
Individualized Memory
Aids
Verbal or Graphic
Cuing/Prompts

Computer-Assisted
Cognitive Training
Misc. Adjunctive
Treatments
Pharmacological
Treatments
Electro-Convulsive
Therapy (ECT)
Physical
Restraints/Isolation
Verbal or Physical
Punishment
Misc. Adjunctive
Treatments

38
Although all have the potential to reduce caregiver stress, interventions for
management of communication problems involving people with AD target two different
audiences: the individuals themselves and their caregivers, who often receive education
and training in handling the symptoms. Because effective communication is a two-way
street, interventions aimed at improving communication skills in the former group
generally involve participation of the latter as well, as in programs in which family or
nursing home staff members are taught to use memory aids (e.g., Bourgeois, 1990, 1992)
and adaptive conversational techniques (e.g., Smith & Buckwalter, 2005). Not
surprisingly, however, Bourgeois and her colleagues (1997) found that caregivers
strongly prefer interventions requiring as little involvement on their part as possible
(Bourgeois et al., 1997). Thus, although integrity of treatment implementation is a major
issue in assessment of any caregiver intervention (Burgio et al., 2001), the heavy burdens
(both practical and psychosocial) carried by family caregivers, who are often already
stretched to the limits of both their abilities and their patience, mandate that any
communication management program be both practical and realistic (Rau, 1991).
For persons in the early to middle stages of AD, communication interventions
may be aimed at supporting sensory memory, information encoding, and retrieval
(Bourgeois, 2002), and may consist of strategies that are either adaptive (intended to
prevent specific linguistic impairments from interfering with the communicative process)
or facilitative (intended to focus on communicative strengths) (Clark & Witte, 1991). In a
recent meta-analysis of the effects of cognitive training (CT) interventions for individuals
with early-stage AD, Sitzer, Twamley, and Jeste (2006) found that although medium

39
effect sizes in most of the domains studied suggested that CT held promise as a treatment
mode, the effect on language function was minimal. Individually tailored training
programs were the most effective in those domains of cognitive performance in which
CT, or cognitive rehabilitation generally, have been tested (Mimura & Komatsu, 2007;
Sitzer et al.).
Given the cognitive and functional limitations of those with more severe AD,
interventions to be used with these individuals typically are not intended to facilitate new
learning or even relearning, but to manage communication by offering them a structure in
which remaining skills may be maintained (Clark & Witte, 1991). In later stages, they
may address unmet needs such as stimulation (Algase et al., 1996), pain relief (Barton et
al., 2005), and general well-being (Lubinski, 1991a). Runci, Doyle, and Redman (1999),
in their case study of an Italian woman living in an Australian long-term care facility,
demonstrated that such methods may work better when they are language-appropriate,
although a subsequent study of three Italian nursing home residents (Runci, Redman, &
O’Connor, 2006) led the authors to question whether speech-based interventions with
individuals in the later stages of AD who are incapable of speech themselves may be
ineffective in any case.
Other behavioral strategies that have proven to be effective in alleviating
behavioral symptoms of AD related to communication are discussed in detail below.

40
Pharmacological Interventions
Medications prescribed for treatment of behavioral symptoms of AD include
antidepressants (both selective serotonin reuptake inhibitors [SSRIs; e.g., sertraline,
escitalopram, citalopram] and older tricyclics), benzodiazepines (e.g., lorazepam,
alprazolam), and antipsychotics (especially atypical types, e.g., risperidone) (Ballard,
Waite, & Birks, 2006; Schneider et al., 2005). Although these drugs have been used
successfully with AD patients, they all have potentially negative side effects, and few
have been tested extensively on older adults (Sink, Holden, & Yaffe, 2005). SSRIs may
lead to headache, dizziness, diarrhea, constipation, and other side effects; some (e.g.,
citalopram) have anticholinergic properties (Roose et al., 2004), which may include
increased risk of delirium and confusion, as well as a tendency to exacerbate memory
problems and other symptoms of dementia (Moore & O’Keeffe, 1999; Tune, 2001).
Benzodiazepines, used to treat anxiety and symptoms of agitation, increase the risk of
falls in older adults and may worsen memory impairment and cause confusion, as well as
(in rare cases) paradoxic disinhibition (Grossberg & Desai, 2003; Sink et al.). Anti-
psychotic medications have been linked to an increased risk of mortality due to stroke
and other cardiovascular problems and carry a “black box” warning from the U.S. Food
and Drug Agency with respect to their use in treatment of behavioral symptoms in AD
patients (Lyketsos et al., 2006; Recupero & Rainey, 2007; Shah, Lee, Xiongwei, Perry,
Smith, & Castellani, 2008. Older, so-called “typical” antipsychotics (e.g.,
chlorpromazine, haloperidol) carry the same risks, in addition to possible extrapyramidal
effects and irreversible tardive dyskinesia (Wang et al., 2005).

41
These treatments focus on eliminating the symptoms of communication problems
rather than identifying and dealing with their antecedents, an approach that may make life
easier for the beleaguered caregiver (Barton et al., 2005) but does little to improve the
quality of life of the affected individual. Because of their side effects and the difficulty of
treating only the particular behaviors at issue, they are recommended only for behaviors
that do not respond to non-pharmacological interventions (California Workgroup on
Guidelines for Alzheimer’s Disease Management, 2008), and should be used sparingly.
The remainder of this paper will focus on behavioral interventions for improving
communication between family caregiver and care recipients, as behavioral methods
logically lend themselves to treatment of communication difficulties, which are seldom
true emergencies in themselves. As noted above, particularly in non-emergency
situations, non-pharmacological intervention is recommended as the treatment of choice
in the management of behavioral symptoms of AD (Logsdon, McCurry, & Teri, 2007).

Method
A search of the PsycINFO, PubMed, AGELINE, and CINAHL databases using
the terms “Alzheimer’s,” “dementia,” “language,” “communication,” “community,”
“intervention,” and “caregiver” generated a total of 325 peer-reviewed journal articles
(including both studies and reviews) and 68 books. Following the database search,
additional sources were uncovered through use of the snowball method, i.e., reviewing
articles referenced in these sources and identified by the databases, as well as related
articles cited by some databases. This yielded 265 relevant items, including reviews,

42
research papers, case studies, and letters that describe or refer to interventions aimed
primarily at alleviating communication difficulties experienced by individuals with AD
and their spouse or family caregivers.
These sources describe nine substantially different interventions. (In several
cases, two or more separate studies, usually but not always involving the same
researchers, employ similar or identical treatments. For the purpose of this review, these
have been treated as a single intervention.) Studies focusing on institution-based
interventions were excluded from this section despite their potential applicability to
individuals living at home, on the ground that nursing homes are unique environments
with their own communication constraints, as discussed above (Le Dorze et al., 1994).
The studies reviewed here are summarized in Table 2.

Interventions Aimed at Individuals With AD or at Caregiver/Care Recipient Dyads
Memory Aids
In an early study specifically aimed at improving communication between AD
caregivers and their care recipients outside the institutional setting, Bourgeois (1990)
used memory aids to enhance conversational skills of three community-dwelling women
with moderate AD, each of whom received care primarily from her husband. The
intervention included working with the caregivers to develop individualized memory
wallets containing laminated cards with short statements of fact and pictures illustrating
them. These were presented to the study participants with AD, who were encouraged to
keep them at hand and to use them while conversing with familiar conversational partners

43
Table 2: Summary of Interventions

AUTHOR

SAMPLE DESCRIPTION OF PROBLEM
TARGETING CAREGIVER (CG)/
CARE RECIPIENT (CR) DYAD

Arkin (1996) 12 early-stage AD patients + 12
undergraduate students

CG difficulty staying on topic
Bourgeois (1990, 1992) 3 mid-stage CRs (1990); 9 mild-to-
moderate CRs (1992) + spouse
CGs/trainers
Mild-to-severe naming deficits
(Western Aphasia Battery; Kertesz,
1982); off-topic statements;
ambiguous, unintelligible, repetitive,
false utterances

Orange & Colton-Hudson (1998) 1 CG/CR (moderate AD) dyad Dyadic communication breakdowns
with associated “challenging
behaviors” of CR; CG burden

Quayhagen, Quayhagen, Corbeil,
Roth, & Rodgers (1995)
78 family dyads (CG/CR with mild-to-
moderate AD) in 3 groups
(experimental/placebo/wait-list control)
Problems with communication
(unspecified), memory, attention,
concentration

Tadaka & Kanagawa (2007) 60 participants with mild-to-moderate
dementia (24 with AD, 36 with vascular
dementia) in 2 groups (treatment/control)

Not specified
TARGETING CAREGIVER (CG)

Bourgeois et al. (1997) 14 CG/CR dyads in 2 groups
(treatment/control)
CG difficulty handling repetitive
verbalizations by CRs

Done & Thomas (2001) 45 CGs (with CRs at various stages of
AD) in 2 treatment groups
“Dysfunctional communication”
(problems in 1 or more of 10 specific
areas); CG stress

Ripich, Ziol, Fritsch, & Durand
(1999)
54 family CGs (including 2 professionals
“like family”) in 3 groups (2 treatment +
control)
Overuse of open-ended questions by
CGs to CRs with early- to mid-stage
AD, resulting in failed responses

Small & Perry (2006) Unspecified number of community-
residing CG/CR dyads (small pilot study)
Poor CG/CR communication

44
Table 2, continued

AUTHOR INTERVENTION

OUTCOME MEASURES
CG/CR

Arkin 10 1-hour weekly sessions of community volunteering
partnered with undergraduate students, including 30-40
minutes of structured conversation
Ratio of on-topic statements to total
statements

Bourgeois 3-4-month program (1990): (1) Individual training for
CGs who then trained CRs in use of memory wallets
with pictured and written stimuli to prompt factual
statements re pre-selected conversation topics; (2) 5-
minute conversations between CR and experimenter (4
sessions per week), CR and conversational partner (2
times per week); Follow-up study (1992) used shorter or
no CR training period
Number of on-topic utterances, factual
statements, ambiguous utterances per 5-
minute conversation

Orange &
Colton-
Hudson
(1) Conversation analysis to identify features of
communication breakdown/repair and
supportive/interfering strategies; (2) 90-minute CG
education session plus 90-minute CG/CR
communication training session weekly for 3 months
CG: Memory & Behavior Problems
Checklist, Burden Interview; CR: Wechsler
Memory Scale, Wechsler Adult Intelligence
Scale-Revised (block design & object
assembly); Dyad: occurrence of various
conversation features
Quayhagen
et al.
Treatment: 12-week, 1 hour/day active cognitive
stimulation training including 8 activities; Placebo:
Same CG activities as treatment group, but with
“passive,” non-directed approach to CR participation

Multiple measures: fluency composite score
(Mattis Dementia Rating Scale/FAS/
categories) + measures of general cognition,
memory, attention, problem-solving,
behavioral function
Tadaka &
Kanagawa
Treatment group: 8 weekly 60-90-minute small-group
reminiscence therapy sessions led by day care staff
member and 2 specialists; Control: regular day care
program with 2 staff members and volunteers
Multi-dimensional Observation Scale for
Elderly Subjects (Helmes, Csapo, & Short,
1987); Mini-Mental Status Examination
(Folstein, Folstein, & McHugh, 1975)
CG

Bourgeois
et al.
3-hour group didactic workshop + 11 weekly in-home
sessions (CG training/practice in use of written cuing
procedures)
Daily frequency of CR repetitive
verbalizations (tracked by CGs); CG self-
efficacy (15-item survey); CG satisfaction
(6-item survey)
Done &
Thomas
Group 1: 2 1-hour communication training sessions
using videos of 10 communication problems followed by
successful communication strategies and comment by
speech/language therapist; Group 2: received booklet
with cartoons outlining 10 communication problems
with advice on dealing with them more effectively
Assessment of Awareness About
Communication Strategies*; Relatives
Stress Scale (Greene et al., 1982); Thomas
Assessment of Communication
Inadequacy*; consumer perceptions
questionnaire* [*created for this study]
Ripich et al. FOCUSED caregiver training program (4 2-hour group
sessions with speech-language pathologist, with or
without additional materials for post-training
reinforcement of newly learned techniques), focused on
structured questioning (yes/no questions)
Number of open-ended vs. yes/no questions
asked by CGs at 6 and 12 months

Small &
Perry
CG education; CG/CR training supervised practice of
“compensatory” and “connecting” strategies
Not specified

45
Table 2, continued

AUTHOR RESULTS COMMENTS

CG/CR

Arkin Improved delayed fact recall, increased substantive
on-topic statements
No control group; baseline measures
(MMSE, BNT) not repeated post-
treatment; no formal follow-up

Bourgeois More statements of fact, fewer ambiguous utterances;
immediate treatment effects w/conversational
partners, before completion of CR training
Generalized use of treatment procedures
reported by several CGs (1990, 1992);
effects maintained for 3 participants up
to 30 mos in follow-up study (1992)

Orange & Colton-
Hudson
Decrease in “problematic” talk despite increase in
utterances; increased CG understanding of AD and
ability to communicate in “more rewarding” ways
w/husband; increased self-perceived coping ability of
CG

No long-term follow-up; cost-
effectiveness of time-consuming,
elaborate procedure is questionable, even
if results are found to be generalizable to
other dyads
Quayhagen et al. Significant cognitive improvement (incl. fluency) in
treatment group, dropping slightly below baseline at
follow-up (but w/less decline than other groups 6
mos. post-treatment)

Randomized controlled study; significant
treatment-phase improvement in memory
for placebo group, but not fluency
Tadaka &
Kanagawa
AD: decrease in withdrawal behavior immediately
after IV; VD: decrease in withdrawal, improvement
in cognitive function immediately and 6 mos after IV
RCT; multiple outcomes measured; IV
less effective w/AD than VD
participants; longer IV period
recommended, esp. for AD

CG

Bourgeois et al. Significant reduction in repetitive verbalizations
during treatment phase and at 3-mo follow-up;
improved CG self-efficacy at follow-up; overall CG
satisfaction
CGs "reluctant" to follow program and
no change measured in self-efficacy until
after weekly staff visits ended; lack of IV
fidelity ascribed to CG desire for
immediate results and return to
premorbid functioning

Done & Thomas At 6-wk follow-up: Significantly > increase in
knowledge of effective communication strategies in
Group 1, significant increase in ability to manage
communication problems at home in both groups,
associated emotional distress reduced in both groups
(although general emotional distress not affected by
either intervention)

CGs said videos showed how much they
already knew from experience and would
help avoid misunderstandings, but were
likely to be effective only if used at early
stage of AD, when verbal
communication is still frequent
Ripich et al. CGs in both IV groups asked < open-ended questions
at 6 mos but > at 12 mos; controls asked > at 6 mos, <
at 12 mos; no significant difference betw. 2 IV groups
Open-ended questions led to most failed
communications, followed by choice
questions; yes/no questions significantly
more successful

Small & Perry CGs understood and employed strategies during IV
period; pre- to post-training improvement in use of
strategies

Unpublished pilot study

46
(the child of one of the women and neighbors of each of the others). The caregivers were
taught to serve as trainers, working with their spouses in twice-daily sessions to practice
use of the wallets in forming responses to conversational probes on prescribed topics. The
participants with AD then joined their partners and, separately, the experimenter in five-
minute conversations in which the same probes were used to elicit responses, aided by
the wallets.
In a follow-up study involving six individuals with AD with spouse or adult child
caregivers (and three others whose caregivers for purposes of the study were day-care
staff members), the same author (Bourgeois, 1992) found that use of the memory wallets
significantly increased the number of on-topic and factual statements and decreased
utterances that were ambiguous (e.g., empty phrases, pronouns without antecedents, or
deictic terms lacking definite references) and “non-productive” (e.g., perseverative,
errorful, or unintelligible) from all participating individuals with AD during the
structured sessions with conversational partners. They also observed fewer non-factual,
ambiguous, and incomplete statements in non-experimental social situations.
Treatment effects were maintained during long-term follow-up testing (as much
as 30 months) in both studies. Although caregiver-trainers reported that they did not see
changes in conversation behaviors exhibited by the individuals with AD during the three-
to four-month period of the study, conversational partners participating in both studies
were more likely to report noticeable improvements in linguistic skills.

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Active Cognitive Stimulation Training
Designed to be implemented by family caregivers in the home, the three-pronged
cognitive stimulation regimen developed by Quayhagen and colleagues (Quayhagen et
al., 1995) targets memory, problem-solving, and conversational skills with the goal of
maintaining baseline levels of cognitive and functional abilities for as long as possible.
Conversation exercises focus on skills related to retained semantic fluency and verbal
exchange abilities in people with AD, which the researchers deemed important for
communicating facts, opinions, and rationale.
Twenty-five family caregiver/care recipient dyads received the intervention.
Performance on the program’s conversation and communication component was
evaluated on a composite measure including tests of word and category fluency and
verbal initiation. The experimental treatment was comprised of 12 weekly in-home
training sessions for both caregiver and care recipient, along with 60 minutes of activities
stimulating the domains of memory (e.g., reminiscing), executive function (e.g., planning
future activities), and social interaction (e.g., conversation while exercising) on each of
the remaining six days of the week. Individuals receiving the experimental treatment
showed improvement at post-test on tests of word fluency, as well as overall cognitive
functioning, general memory, and non-verbal memory. Although all outcomes for the
experimental group had declined by the 9-month follow-up, they remained high relative
to those of the placebo and control group members. A notable feature of the intervention
was its generalizability to situations occurring in the “real” lives of dyad members, which

48
the authors attribute to ecological validity of the prescribed experimental tasks for
individuals with AD (Quayhagen et al., 1995).

Volunteers in Partnership (VIP)
Grounded in research into the mental and physical health benefits of work and
social involvement for both normal and cognitively impaired older adults, the VIP
program (Arkin, 1996) was designed to improve conversational skills by pairing people
with AD with college students who accompanied them to volunteer jobs (e.g., working
with children at local day care centers, helping wheelchair-bound nursing home residents,
stuffing envelopes for a non-profit organization) and on outings. Other components of the
intervention included use of “conversation joggers” by the student participants (to
encourage their partners with AD to talk about such topics as that day’s volunteer
experience, personal reminiscences, or family history) as well as exercises in category
fluency, object naming, reading comprehension, and other communication-related skills.
Of the 11 participants who completed the program (five in the first of two 10-
week sessions, six in the second), 10 had mild-to-moderate AD, and the eleventh was
described as being in the moderately severe stage of the disease. Participants resided in a
variety of community settings including their own homes, assisted living facilities, and
group homes. Evaluation of conversational ability at baseline was based on responses to
several prompt questions and sentence completion, proverb interpretation, and picture
description tasks. At post-test, all five members of the first group showed significant
increases in the number of on-topic, substantive statements produced on the discourse

49
measures; four improved their scores on proverb interpretation; and three produced more
statements of fact on the picture description task than at baseline. Among the second-
cycle participants, two demonstrated improvement in discourse measures, three improved
on the proverb task, and five improved their performance on the picture description task.
The program’s benefits, as summarized by its developer, include being “easy to
replicate and administer, low in cost, and beneficial to the patients, students, family
members, and participating community agencies involved” (Arkin, 1996, p. 12). Program
evaluations completed by caregivers were generally positive, and five caregivers asked to
continue the program after the experimental phase ended. All study participants with AD
received memory books created by the students, containing pictures and biographical
essays to facilitate conversation with others after the experimental intervention ended.

Enhancing Communication in Dementia of the Alzheimer’s Type
In a single-case pilot study of a program designed to improve the language
performance of an individual with AD, decrease breakdowns in communication between
the individual and his caregiver, reduce the frequency of problem behaviors, and lower
the level of caregiver stress, Orange and Colton-Hudson (1998) worked with a man with
moderate AD and his wife, the primary caregiver. The husband was described as having
severe deficits in memory, concentration, and attention. Following extensive standardized
testing of the individual’s language and overall cognitive abilities, his behavioral
symptoms, and caregiver burden, the participants entered the pre-program assessment
phase of the four-month program. The two-week-long assessment included videotaping

50
of two lunch and two dinner conversations over the course of one week, followed by a
week of discourse analysis using the trouble source repair sequence method (Schegloff,
Jefferson, & Sacks, 1977) in which the researchers look for breakdowns in
communication, identify their sources, and determine whether and how they are repaired
by one or both speakers.
The results of this analysis were used to create a highly individualized program of
education and training for the caregiver, who received two 90-minute home visits per
week for three months during which she was educated about AD generally and
communication problems in particular. She also learned methods of handling the specific
problems observed by the researchers, with opportunities to practice the management
strategies under their supervision. Finally, the pre-program assessment process was
repeated and the results analyzed again using the same test battery and discourse analysis
protocol employed in the initial evaluation.
Results of post-program testing showed that both language abilities and
behavioral symptoms exhibited by the individual with AD remained stable for the
duration of the program, with some decrease in the caregiver’s reaction to the behaviors
but a small increase in perceived burden. To support their conclusion that their program
brought about “unique and positive changes” (Orange & Colton-Hudson, 1998, p. 65) in
both partners, the authors pointed out that the frequency of appearance of specific
conversational elements that most often led to breakdowns in communication between
them—confusion as to the topic of a particular conversation and use of potentially
ambiguous pronouns, together with introduction of new information during attempts at

51
repair of misunderstandings—decreased substantially for both partners after strategies for
enhancing communication were taught to the spouse caregiver. In addition, utterances by
the partners increased by 20%, but the percentage of these deemed “problematic” by the
researchers declined from 27.1% of total utterances to 20.7%. Finally, the caregiver
expressed satisfaction with the educational components of the program and its positive
effect on perceived coping ability.
Although the advantages of such an intensive and highly individualized program
are obvious, so too are the costs, which may outweigh the potential benefits for many
people with AD. Even assuming that their positive results are generalizable to other
spouse-caregiver dyads, the detailed conversational analysis required to custom-tailor
strategies for the needs of a particular couple is likely to exceed both the abilities and the
available time of most therapists. Moreover, as noted by the authors, the lack of follow-
up testing leaves unanswered the crucial question whether the program’s positive effects
lasted after the one-on-one support provided by the researchers was withdrawn,
especially in light of the increased burden reported by the caregiver even with such
support. Any attempt to decrease the time and effort required to administer the program
on a larger scale would destroy its essential features of individualization and intensive
training, thus eliminating its uniqueness and, possibly, its utility.

Reminiscence Therapy
In an effort to correct what they viewed as inadequate and inconclusive previous
trials of reminiscence therapy techniques with dementia patients, Tadaka and Kanagawa

52
(2007) performed a randomized controlled trial of an eight-week program involving 60
community-residing participants at a Japanese geriatric health services and daycare
facility. Of the 30 individuals with mild-to-moderate dementia in the treatment group, 12
had been diagnosed with mild to moderate AD and 18 with vascular dementia; the 30
individuals in the control group were matched with respect to diagnosis. Half of those
with AD and half of those with vascular dementia were randomized to the treatment
group, and the remaining participants received the routine care provided by the facility (a
six-hour program of meals, bathing, and light exercise led by two staff members and
community volunteers).
The intervention consisted of weekly 60-to-90-minute sessions of reminiscence
therapy in addition to the same routine care received by the control group. The therapy
was administered to groups of six participants facilitated by a staff member and two
trained specialists (psychologists and public health nurses) who introduced each week's
theme and asked questions intended to elicit memories relating to the theme.
Three of the five categories of "daily life activities" that the authors hypothesized
would be enhanced by the treatment included parameters related to communication. The
first of these categories, disorientation, encompassed talking and other communicative
behaviors; the second, irritability, included verbal abuse of family and others; and the
third, withdrawal, included initiating and responding to social contacts. They also
measured cognition using the Mini-Mental State Examination (MMSE; Folstein, Folstein,
& McHugh, 1975), which contains items relating to language function.)

53
For the 20 participants with AD who received all eight weeks of treatment, post-
intervention measurements demonstrated a significant effect on withdrawal as compared
to control group members, but that effect disappeared in follow-up testing six months
later. Neither cognitive function nor any category of activities other than withdrawal was
affected in this group, a result the authors describe as inconsistent with other studies
using reminiscence therapy with individuals with AD. They suggest that the discrepancy
may stem from the small sample size and the relative severity of their participants' illness,
with half having a rating of 2 on the Clinical Dementia Scale (CDS; Hughes, Berg,
Danziger, Coben, & Martin, 1982), indicating moderate AD. They fail to note that even
the small effect the intervention did appear to produce could be due to the atypically high
level of attention received by those in the small treatment groups.

Interventions Aimed Primarily at Caregivers
FOCUSED Program
Ripich noted in 1994 that “to date, no systematic, comprehensive training
program for improving communication skills for caregivers has been developed and
evaluated” (p. 101). The FOCUSED program of communication training, although pilot-
tested with long-term care nursing assistants (Ripich, 1994; Ripich, Wykle, & Niles,
1995), specifically addresses the needs of family caregivers in an effort to improve
understanding of communication problems, increase caregiver satisfaction, and lower
caregiver stress levels by enhancing the quality of interpersonal communication between
them and their relatives with AD residing at home (Ripich). An important finding of the

54
pilot study was that caregivers in formal settings can be trained to use strategies to
improve communication with their care recipients (Ripich et al.), which subsequently was
replicated with informal family caregivers working in their homes (Ripich et al., 1999).
The name of the FOCUSED program is an acronym for its major elements: Face-
to-Face (i.e., maintain eye contact with the person with AD), Orientation (repeat key
words and sentences until they are clearly understood), Continuity (continue discussing a
single topic), Unsticking (suggest words to facilitate completion of sentences when the
individual becomes “stuck”), Structure (ask simple questions, with only one or two
response options), Exchange (use prompts and other techniques to ensure smooth
conversational flow), and Direct (use short sentences, clear hand signals and expressions,
pictures, etc., to aid in processing) (Ripich, 1994; Ripich et al., 1995). The program
consists of six two-hour modules addressing (1) the progress of communication decline in
AD, (2) how to distinguish AD from normal forgetting and depression, (3) use of
interpersonal skills with people with AD, (4) ethical and cultural aspects of
communication, (5) stages of AD and how they correlate with specific communication
problems, and (6) use of FOCUSED strategies to foster both verbal and non-verbal
communication. Communication goals were linked to reasonable expectations for
individuals at various stages of AD, and program results were evaluated using caregiver
pre- and post-tests for each module and six-month follow-up testing, as well as self-
evaluations by participating caregivers. Gains in caregiver knowledge were observed
with respect to all modules, with significant progress in the two modules devoted to the
FOCUSED program itself.

55
A related study involving family caregivers of 32 early-to-midstage individuals
with AD, most of whom resided at home (Ripich et al., 1999), obtained similar results.
Caregivers received the FOCUSED training described above in four weekly sessions,
including handouts and reminder cards; in addition, 10 participants were selected to
receive “booster” training in the form of audiotapes, phone calls, instructions for
communication-promoting activities involving the person with AD, and other reinforcers
over an 11-month period. The training for all 32 caregivers emphasized the use of
“yes/no” and “choice” questions over open-ended ones, which put more stress on limited
memory resources (Ripich et al.). All caregivers in the treatment group were found to use
more yes/no questions and fewer open-ended ones than members of the control group
after six months, and yes/no and choice questions elicited more successful exchanges and
fewer unsuccessful ones than did open-ended questions.
In this connection, it should be emphasized that a spouse caregiver’s behavior
during interactions with a partner with AD may impede effective communication and
precipitate further deterioration of the individual’s abilities (Gallagher-Thompson et al.,
2001). Examining caregivers' use of various strategies, Small, Gutman, Makela, and
Hillhouse (2003) noted that those that appear to facilitate communication most
successfully may also foster dependence by, in the case of yes/no questions, keeping
options to a minimum and decreasing autonomy.
Working with a condensed version of the FOCUSED program manual (Ripich,
(1996), Weinrich and colleagues (Weinrich et al., 2006) designed a two-session program
of group counseling aimed at (1) alleviating communication-based caregiver hassles, (2)

56
increasing caregivers’ knowledge and understanding of communication problems
stemming from AD, and (3) reducing the expense and difficulty associated with long-
term interventions. Six of the 19 caregivers involved in the program were family
members of individuals with AD identified as informal caregivers; the remaining 13 were
professionals employed in the “Alzheimer’s unit” of an assisted living facility. Their care
recipients included 18 full-time residents of the unit and one community resident
attending an adult day care program there. Training began with a 90-minute instructional
session describing and explaining communication strategies, followed two weeks later by
a second session focused on specific communication goals and strategies appropriate to
the different stages of AD. Outcome measures administered at baseline and post-
intervention included the Caregiving Hassles Scale (Kinney & Stephens, 1989), which
looks at stress and burden on a day-to-day basis; the Communication Perceptions
Questionnaire (Weinrich et al., 2006), designed to elicit information regarding
caregivers’ attitudes toward their responsibilities and communications with their care
recipients; and an AD Knowledge Survey adapted from a survey designed for the
FOCUSED Program (Ripich, 1994; Weinrich et al.).
Analysis of results indicated that both caregiving hassles and perception of
communication problems remained unchanged for family caregivers at completion of the
intervention. However, knowledge of communication problems in AD and of FOCUSED
strategies for managing them improved significantly for both family and professional
caregivers, with no significant difference in knowledge gains between the two groups.
The fact that the sole informal caregiver residing in the community with a relative with

57
AD was able to complete the program without reported difficulty provides some support
for the authors' hypothesis that a short-term educational intervention could help to
improve home-based caregivers’ attitudes toward their care recipients with
communication difficulties.

Modification of Repetitive Verbalizations
Bourgeois and colleagues (Bourgeois et al., 1997) continued their research into
the use of cuing systems and visual memory aids in an attempt to reduce the occurrence
of repetitive verbalizations (e.g., questions, requests to go home, accusations, and other
statements), described by caregivers as particularly stressful and disruptive. Seven spouse
caregivers of community-residing people with moderate to severe AD, all of whom
identified repetitive verbalizations as being among their spouses’ most upsetting
behaviors, received the intervention.
Treatment consisted of 11 weekly hour-long, in-home sessions with the project
therapist, as well as a three-hour workshop that included an introduction to basic
behavioral management techniques and the concept of reinforcement. The main elements
of the individualized programs were (1) a system of written cues (answers to often-
repeated questions or statements) and (2) instructions for their use when verbally
repetitive behavior occurred. Most importantly, caregivers were to avoid giving
directions other than to read the cues, and either to praise the person with AD for using
the cuing system properly or walk away if he or she tried to argue about the system.

58
Caregivers recorded the frequency of repetitive verbalizations each day during the length
of the intervention and the six-month follow-up period.
Caregivers who consistently employed this treatment method through the
intervention and follow-up period saw a rapid decrease and continued decline in verbally
repetitive behavior that was maintained at below-baseline rates. Although frequency of
targeted behaviors varied considerably both between and within participants at baseline,
both ranges were much narrower following treatment, whether or not the program was
administered consistently. Caregivers in general expressed satisfaction with the program,
and several extended their use of the cuing system after the treatment phase to other
behaviors they desired to decrease, with varying (but encouraging) results. Caregivers’
confidence in their own ability to manage difficult behaviors in their spouses with AD
also increased after the intervention ended, as they began to see the results of their own
activities in the absence of the project therapist. Despite these positive results, however,
not all participating caregivers were comfortable with the process of administering the
behavioral management techniques or willing to use them consistently, a reaction the
authors attribute to both disappointment resulting from unrealistic expectations of
improvement and a marked preference for interventions that require little time or effort
from frequently exhausted and discouraged caregivers.

59
Training in Communication Skills for Informal Carers of People Suffering from
Dementia

Done and Thomas (2001) evaluated a brief training program aimed at improving
communication skills of home-based caregivers, predicated on the assumption that the level
of expertise they have acquired while working with their own care recipients, while seldom
acknowledged even among themselves, makes efficiency in use of existing skills the most
useful target of such training. Citing evidence that well-trained volunteers can be as
effective as speech and language therapists in facilitating communication with individuals
with dementia (Pearson, 1995), the authors compared participation in a program consisting
of two workshop sessions of video demonstration and discussion, held approximately one
week apart, with distribution of a booklet containing advice on handling communication
problems. The hour-long workshop sessions each involved four to six participants meeting
at a local adult daycare center and included video demonstrations and discussion of
communication skills. Thirty caregivers were assigned randomly to the workshop
intervention and 15 received the booklet intervention.
In follow-up testing six weeks after the second group session, workshop
participants were found to have increased their knowledge of communication issues
relevant to care of their relatives with AD significantly more than did those receiving
only booklets. On the other hand, improvements in ability to cope with communication
problems at home were approximately the same for both groups, as were decreases in
levels of communication-related emotional stress. Neither intervention had a measurable
effect on caregiver stress levels generally, a finding the authors describe as unremarkable

60
in light of the narrow focus of both interventions. Although a number of participants in
both treatment groups commented that they found the information to be useful, the
consensus of these caregivers of individuals at various stages of AD was that the program
would only have been worthwhile at the early stage, when their care recipients were still
capable of effective verbal communication. The authors also suggested that a much
longer-term study, with follow-up testing conducted over a period of years rather than
weeks, would be necessary before a conclusive judgment could be reached with respect
to the efficacy of their approach.

Training in Communication Enhancement for Dementia (TRACED)
The TRACED program (Small & Perry, 2006), designed specifically for use with
family caregivers residing with their care recipients, combines features of several of the
caregiver-focused interventions discussed above. The authors employ a familiar
educational approach, beginning with a review of the individual caregiver’s knowledge of
dementia and continuing on to a discussion of dementia-related changes in cognition in
general and changes in language in particular. The relationships between language
changes and meaningful interpersonal communication, and between such changes and
common behavioral symptoms, are explored with the caregiver. Two kinds of
communication strategies to be employed in the training phase of the program, dubbed
“compensatory” and “connecting” by the authors, also are introduced prior to
commencement of the training program itself. Compensatory (cognitive-linguistic)
strategies include empirically tested techniques such as limiting sentences to a single

61
idea, keeping demands on memory to a minimum when asking questions, and using
“cueing cards” to redirect attention from repetitive verbalizations; connecting (relational)
strategies are intended to facilitate involvement in conversation by, e.g., making
supportive comments that encourage the care recipient to join in, building on ideas or
words introduced by the care recipient, or suggesting a context for statements that appear
to be unconnected or out of context.
The training program itself is based upon these strategies, customized according
to the needs, style of interaction, and specific goals of the particular dyad. A key aspect
of the TRACED program is the opportunity for caregivers to implement what they learn
through supervised practice with the care recipient, exercises in creative problem solving,
and review and evaluation of the quality of interactions.
Although a planned randomized clinical trial of TRACED has yet to be performed
(J.A. Small, personal communication, August 18, 2008), a small pilot study demonstrated
that its strategies could be taught to and understood by caregivers with relative ease
(Small & Perry, 2006). Post-training evaluation showed improvement in caregivers’ use
of compensatory and connecting strategies, and participants themselves reported positive
effects on dyadic communication.

62
Chapter 4: Conclusions
There now exists a considerable body of research on language-related
concomitants of AD, behavioral symptoms and other communication-related problems of
people with the disease, and management of such issues by caregivers, but reports of
evidence-based interventions to improve communication between individuals in various
stages of AD residing at home and their family caregivers remain limited. Those that do
exist are often either so generic as to be nearly indistinguishable from one another (as is
frequently the case with caregiver education programs), or so individualized and complex
(especially at the pre-intervention or analysis stage) as to be prohibitively complicated
and expensive. However, both an informational component and some degree of
customization and specificity appear to be essential characteristics of effective programs
to improve communication. Ease of administration—perhaps the most important (and
most difficult) criterion for an intervention’s success—must be a primary focus of future
research in this increasingly important field.
The preceding review of available interventions suggests several characteristics
that distinguish those found to be most effective. These include the following:

Education
It is seldom (if ever) useful to hand materials to an untrained caregiver and expect
him or her to figure out how to use them effectively without some context and direction
(Spilkin & Bethlehem, 2003). Caregivers want and need a clear understanding of what to
expect with respect to communication and other behaviors as their relatives move through

63
the course of AD, as well as what they can hope to accomplish through the use of a
particular intervention. Without this knowledge, there is little chance that the treatment
will be administered in a manner likely to maximize its efficacy. Along with general
information about AD, caregiver education for communication enhancement should
devote attention to the importance of communication for both themselves and their
relatives who have the disease, the relationship between AD and communication
problems, and specific strategies for improving communication by means of
conversational and environmental manipulation. At least one researcher has
recommended including these topics in continuing education programs for family
caregivers similar to those offered to nursing home staff members (Lubinski, 1991a).

Individualization
The heterogeneous nature of language and communication problems in AD
requires treatments that are tailored, to the extent possible, to the needs and preferences
of a particular caregiver/care recipient dyad. Although group communication counseling
also may be successful in reducing caregiver burden, stress, and related psychological
factors, individual counseling is generally more effective (Weinrich et al., 2006).
Moreover, given the extremely wide range of both abilities and personal preferences of
persons with AD and their caregivers, not to mention the small sample sizes involved in
most of these intervention studies, favorable results may be particularly difficult to
generalize to larger populations. This is especially true for those studies in which
participants were not all at the same stage of the disease.

64
Realistic and Practical Design
No matter how effective an intervention may be in the research setting, it is
unlikely to be adopted by family caregivers if they cannot fit it easily into their lives. It is
important to remember that the object of such a program is to enhance communicative
abilities in order to improve the quality of life of both the caregiver and the family
member with AD. Thus, a program that is perceived as adding additional, unlooked-for
responsibilities and stressors to their already exhausting and stressful days will not have
the desired effect (if it is used at all), regardless of results obtained in even the most
rigorous clinical trials. On the other hand, although integrity of implementation may be
the key to an intervention’s success, any treatment is sometimes better than none if it
contributes to a caregiver's sense of self-efficacy or reduces a care recipient's boredom or
isolation.
Given the anticipated growth in the percentage of the population with AD and the
crucial role of communicative ability in maintaining the personhood of individuals with
the disease. Of particular concern is the lack of interventions involving those no longer
capable of effective verbal communication, whose attempts at having their needs met by
others continue too often to be misinterpreted or ignored, even by professionals in the
field of dementia caregiving. In view of the social and mental health-related ramifications
of deteriorating communicative abilities for both caregiver and care recipient, a greater
emphasis on randomized controlled trials of behavioral interventions targeting this
problem, involving larger numbers of participants, is urgently needed.

65
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Abstract (if available)

Abstract Communication is a basic human need, and communication problems are endemic among individuals with Alzheimer's disease (AD), with specific problems common at each stage of the disease. Because the majority of individuals with AD reside with family caregivers in the community, evidence-based interventions to improve communications between the members of these dyads, whose needs differ from those of individuals living in long-term care facilities with professional caregivers, are essential. This paper discusses typical communication changes and difficulties that arise during the course of AD and their psychosocial ramifications for both caregivers and care recipients. It also reviews nine studies of evidence-based interventions involving community-residing dyads and finds that key attributes required for success are caregiver education, individualization, and practicality.

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Asset Metadata

Creator Jones, Randi Schnur (author)

Core Title Communication and home-based interventions in Alzheimer’s disease -- a review

School College of Letters, Arts and Sciences

Degree Master of Arts

Degree Program Psychology

Degree Conferral Date 2009-08

Publication Date 07/19/2009

Defense Date 05/11/2009

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

Tag Alzheimer's disease,caregiver,Communication,dementia,intervention,Language,OAI-PMH Harvest

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Andersen, Elaine S. (committee chair), Gatz, Margaret (committee chair), Knight, Bob G. (committee member)

Creator Email randi.s.jones@gmail.com,randijon@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-m2377

Unique identifier UC1182696

Identifier etd-Jones-2983 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-250876 (legacy record id),usctheses-m2377 (legacy record id)

Legacy Identifier etd-Jones-2983.pdf

Dmrecord 250876

Document Type Thesis

Rights Jones, Randi Schnur

Type texts

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

Repository Name Libraries, University of Southern California

Repository Location Los Angeles, California

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