University of Southern California Dissertations and Theses

Family caregiver well-being: generational differences and coping strategies

(USC Thesis Other)

Family caregiver well-being: generational differences and coping strategies

PDF

Download a page range

Download transcript

Copy asset link

Request this asset

Transcript (if available)

Content

FAMILY CAREGIVER WELL-BEING:

GENERATIONAL DIFFERENCES AND COPING STRATEGIES

by

Laura Porter Giles Rath

A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(GERONTOLOGY)

August 2020

Copyright 2020 Laura Porter Giles Rath

ii

Dedication

This work is dedicated to all of the family caregivers – you make all other things possible.

iii

Acknowledgements
Thank you to my family – Steve, Audrey, and Anna – I love you! Thanks for supporting
me in pursuing my passion for lifelong learning.
Thank you to Kate Wilber, my mentor and role-model in academics and life. You are
leading a revolution to ensure a secure old age for all people. All the way back to my first phone
call to you in 2015 asking about applying to the PhD program, I thank you for believing in me
and for truly believing in life-long education. Thank you for sharing your years of wisdom and
leadership. My greatest hope is to have made you proud.
Thank you to Zach Gassoumis, thanks for being a patient and kind professor and mentor.
At some point, every year, I sat with you side-by-side doing stats, and I know I would not have
made it this far without your wisdom and support.
Thank you to Jennifer Ailshire for your guidance and excellent example of what
professorship and scholarship looks like in a PhD program. You have a special ability to make
difficult concepts understandable and always showed us the path to achieve our own learning
goals.
Thank you to my entire committee Kate Wilber, Zach Gassoumis, Jennifer Ailshire,
Donna Benton, and Susan Enguidanos for your guidance and feedback along the way.
A special thank you to my co-authors: Kate Wilber, PhD; Jennifer Ailshire, PhD; Zach
Gassoumis, PhD; Susanna Mage, MA; Kylie Meyer, PhD; Elizabeth Avent, MA; Paul Nash,
CPsychol, AFBPsS, FHEA; and Donna Benton, PhD.
Thank you to the Fantastic Four – Gerson Galdamez, Carly Roman, and Kristi
Wisniewski: academics and learning is a team sport with you; and I got the best teammates.
Thanks for doing PSETS, study groups, group projects, quals, and academic life together. I am

iv

so proud of each of you and know you are each on your way to being champions and thought
leaders in our field.
Thank you to the Secure Old Age lab. Kylie Meyer thank you for your patience and poise
in walking me through my first qualitative study. My thanks to the rest of the wonderful lab
members, especially those with whom I had the opportunity to partner on different projects over
the past four years: Julia Rowan, Anat Louis, Haley Gallo, Liz Avent, and Gerson Galdamez.
Thank you to everyone at the USC Leonard Davis School of Gerontology – thank you for
growing the field and supporting education dedicated to aging issues and improving health and
well-being across the lifecourse.
To mom and dad – thank you for setting me on this path of valuing learning; and thanks
for showing me the way in your own returns to education throughout my upbringing. To my
friends – for listening to me talk about school for the past four years!
Thank you to Archstone Foundation for supporting my work and endeavors in returning
to school. I would like to thank Mr. Prevratil for encouraging me to continue my education and
all of my colleagues for their support. I am proud to seek to help fulfill Archstone Foundation’s
mission of improving the health and well-being of older Californians and their caregivers in my
work each and every day.

v

Table of Contents

Dedication ....................................................................................................................................... ii
Acknowledgements ........................................................................................................................ iii
List of Tables ................................................................................................................................ vii
List of Figures .............................................................................................................................. viii
Abstract .......................................................................................................................................... ix
Chapter 1: Introduction ................................................................................................................... 1
Importance of Caregiving to the Lifecourse ............................................................................... 2
Conceptual Model of Caregiver Stress Process .......................................................................... 3
Negative Consequences of Caregiving ....................................................................................... 5
Positive Aspects of Caregiving ................................................................................................. 10
National Survey Data on Caregiving ........................................................................................ 15
Dissertation Structure ................................................................................................................ 18
Chapter 2: Who Shoulders the Burden of Care? Prevalence and Characteristics of Family
Caregivers in the United States ..................................................................................................... 21
Introduction ............................................................................................................................... 21
Methods ..................................................................................................................................... 23
Results ....................................................................................................................................... 26
Discussion ................................................................................................................................. 28
Conclusion ................................................................................................................................. 29
Chapter 3: Caregiver Mental Health Outcomes: Are There Differences Across Generational
Cohorts? BRFSS 2015-17 ........................................................................................................... 346
Introduction ............................................................................................................................... 36
Methods ..................................................................................................................................... 45
Results ....................................................................................................................................... 48
Discussion ................................................................................................................................. 50
Conclusion ................................................................................................................................. 53

vi

Chapter 4: Supporting Family Caregivers: How Do Caregivers of Older Adults Cope with Strain
in Their Role? ............................................................................................................................... 59
Introduction ............................................................................................................................... 59
Strained Caregiving Relationships as a Source of Stress and Health Consequences................ 60
Coping Strategies to Manage Caregiving Stressors .................................................................. 62
Coping with Tension in Care Relationships .............................................................................. 63
Methods ..................................................................................................................................... 65
Results ....................................................................................................................................... 69
Discussion ................................................................................................................................. 84
Chapter 5: Conclusion................................................................................................................... 96
Demand for Caregivers ............................................................................................................. 96
Summary of Research Findings ................................................................................................ 96
Promising Interventions for Caregivers .................................................................................. 100
References ................................................................................................................................... 106

vii

List of Tables

Table 2.1 States Included in Analysis by Year 31
Table 2.2 Included States by Year 32
Table 2.3 Caregiver Proportion Estimate 33
Table 2.4 Demographic Overview of Family Caregivers 34
Table 2.5 Bivariate Relationship of Caregiver Relationship and Caregiving
Length
35
Table 3.1 Included States by Year 56
Table 3.2 Demographic Characteristics of Caregivers by Generational Cohort
(N = 50,745)
57
Table 3.3 NBR Incidence Rate Ratios from Models of Expected Poorer Mental
Health Outcomes by Generational Cohort Among Family Caregivers
(N = 50,745)
58
Table 4.1 Structured Interview Questions 89
Table 4.2 Caregiver Characteristics (N = 67) 90
Table 4.3 Caregiving Situation (N = 67) 91
Table 4.4 Codebook: How Do Caregivers Cope with Strain and Tension in
Their Role?
92
Table 4.5 Coding Frequency 95

viii

List of Figures

Figure 1.1 Stress Process Model for Caregiver Stress 20
Figure 2.1 Stress Process Model for Caregiver Stress 30
Figure 3.1 Stress Process Model for Caregiver Stress 55
Figure 4.1 Stress Process Model for Caregiver Stress 88

ix

Abstract
Older adults increasingly express a preference to age in place in their own homes and
communities (Kahana, Lovegreen, and Kahana, 2011). However, for some, aging in place will
require additional support to ensure that they can do so successfully and safely. That is where the
critical need for caregiving comes into play. Caregiving is a broad term that encompasses several
concepts such as Long-term Care (LTC), Long-term Services and Supports (LTSS), and
“informal” caregiving provided by a family member or friend to support daily living and
functioning. Long-term care provides “residential and medical services” for older adults who are
no longer getting their needs met by informal caregiving in the community (Kahana et al., 2011).
The care provided by family members is often termed “informal” or family caregiving
(O'Shaughnessy, 2013).
There are over 40 million informal caregivers providing such care in the United States
(National Alliance for Caregiving [NAC] & AARP, 2015). It is critical to understand the impact
of this care, which had an estimated economic value of $470 billion in 2013 (Reinhard, Feinberg,
Choula, & Houser, 2015).
Previous research has found both positive and negative consequences from those
providing caregiving (Pinquart & Sörensen, 2003). Broadly, negative implications include
decreases in financial well-being and quality of life and increased depression, burden, and stress,
mortality, physical morbidities, suicidal ideation, and dementia risk. Caregiving is also
associated with many positive aspects, such as greater meaning and purpose, increased self-
efficacy, increased empathy, and feelings of family closeness.

x

This dissertation sought to provide an overview of informal caregiving in the United
States through detailed examination of generational differences and coping strategies employed
by caregivers to address strain in their role.
First, a demographic overview of family caregivers is presented using Centers for
Disease Control’s Behavioral Risk Factor Surveillance System (BRFSS) survey data from 2015-
2017. BRFSS is a nationally representative survey with an optional caregiver module.
Approximately 1 in 5 adults provided care to a friend or loved one in the past 30 days, based on
BRFSS survey results from 2015-2017.
Next, caregiver data from the nationally representative Centers for Disease Control’s
Behavioral Risk Factor Surveillance System (BRFSS) survey from 2015-2017 were used to
conduct negative binomial regression to explore differences in mental health outcomes across
generational cohorts of family caregivers (N = 50,745). Although previous studies have
addressed the effects of caregiving on caregivers’ mental health, research has not examined
similarities and differences among generational cohorts of caregivers of older adults, i.e.,
Millennial (born 1981-1996), Generation X (born 1965-1980), Baby Boomer (born 1946-1964),
and Silent Generation (born 1928-1945). Results showed that Millennial caregivers have an
incidence rate ratio of 1.22 times more self-reported days of “stress, depression, and/or problems
with emotions” compared to Generation X caregivers (p<0.01); 1.64 times compared to Baby
Boomers (p<0.001); and 2.38 times compared to Silent Generation caregivers (p<0.001).
Differences among generational cohorts suggest that Millennial caregivers may have different
needs than older generations of caregivers.
Finally, a qualitative study was used to understand how caregivers respond to strain in the
caregiving relationship. Although prior research has described the experience and approach to

xi

caregiving, it has not focused on understanding how strain develops and how caregivers cope
with tension when it arises. Nine focus group discussions with a purposeful sample of racially
and ethnically diverse family caregivers in Los Angeles were conducted. Conventional content
analysis was used to understand the various mechanisms that caregivers employ to cope with
strain and tension in the caregiving relationship. Thirty individual categories were identified, and
five superordinate themes emerged from the data. The five themes emphasized by focus group
participants were: 1) Self-care; 2) Self-concept and awareness; 3) Adaptation of behaviors and
feelings; 4) Respite and getting help; and 5) Formal and informal support.
Taken together, the implications of this work can help inform: 1) the design of programs
to support caregivers’ mental health and specific coping strategies employed by family
caregivers and 2) policy considerations that address the unique needs of a younger caregiver
population. To be truly effective, such responses should be person-centered, intersectional, and
intergenerational in their approaches.

1

Chapter 1: Introduction
Caregiving is interwoven throughout the lifecourse. This is immediately evident as we
are cared for by our parents and guardians as infants, toddlers, and during our school-age years.
The need for care as in late life is increasing as we live longer, and as we live longer with
increased years of chronic disease and disability.
There are over 40 million informal caregivers providing such care in the United States
(NAC & AARP, 2015). The estimated economic value of this care was valued at an estimated
$450 billion in 2009 (Feinberg, Reinhard, Houser, & Choula, 2011), and grew to an estimated
value of $470 billion in 2013 (Reinhard et al., 2015). The impact of this care is critical to
understand.
This dissertation aims to examine current and emerging issues related to family
caregiving. Implications of caregiving have been well documented to be related to both feelings
of burden and resiliency. The effects of caregiving and the feelings it produces, like many issues
of aging, is a complicated and multi-faceted issue. There is no black and white. For this reason,
the consequences of caregiving are often described as having both positive and negative aspects.
I envision this as two sides of the same coin – linked yet distinct.
Accordingly, the introduction will be organized broadly into three sections: first, the
challenges associated with caregiving will be described; second, on overview of the perceived
and real benefits that have been found to be associated with caregiving will be provided; and
finally the three empirical studies of the dissertation will be outlined. Negative consequences of
caregiving can be grouped into added financial burdens and outcomes that lead to a decreased
quality of life.

2

Importance of Caregiving to the Lifecourse
More and more, older adults are expressing a preference to age in place in their own
homes and communities (Kahana et al., 2011). In order to remain in their own homes and
communities, however, support is often needed to do so successfully. That is where the critical
need for caregiving comes into play. Caregiving is a broad term that can encompass several
concepts such as Long-term Care (LTC), Long-term Services and Supports (LTSS), and
“informal” caregiving provided by a family member or friend to support daily living and
functioning. Long-term care provides “residential and medical services” for older adults who are
no longer getting their needs met by informal caregiving in the community (Kahana et al., 2011).
The care provided by family members is often termed “informal” or family caregiving
(O'Shaughnessy, 2013).
The demographic trends of living longer, and living more years with disability, is
increasing societies’ need for the provision of care to older adults (Crimmins & Beltrán-Sánchez,
2010; Kahana et al., 2011). The need for caregiving impacts both the individual lives of the
people who are providing care and has collective implications for society at large. The efforts,
time, energy, and sacrifice of those who provide unpaid care are too often undervalued, and yet
caregivers fill a great need in our approach to long-term care.
First, it is helpful to understand the scope of the issue. In the United States, an estimated
34.2 million adults have provided unpaid care to an older adult (age 50 or older) in the past 12
months (AARP, 2015). In 2005, approximately 21% of adults provided informal care (Pavalko,
2011). What we know about those providing this care is expanding as important scholarly work
such as the National Academies recent 2016 report Families Caring for an Aging America,
brings national attention to the issue.

3

Given the aging of our society, caregivers fill a critical need. These caregivers are likely
to be caring for a spouse, are less likely to be employed, and play a critical role in
communicating with other care professionals and the health care team (AARP, 2015). The
estimated economic value of the care provided cannot be overstated. For example, the value of
that care was an estimated $450 billion in 2009 and an estimated $470 billion in 2013 (Reinhard
et al., 2015).
As mentioned above, although Americans are living longer, they are increasingly living
with added years of disease and additional functional impairments. For example, between 1998
and 2006 males in the U.S. have gained a year of life expectancy; however, they have added an
additional 1.5 years with functional disability. For women, during the same time period, the gain
was a half year in terms of life expectancy, but they also gained an additional year with disease
and fully a year and a half with functional disability (Crimmins & Beltrán-Sánchez, 2010).

Conceptual Model of Caregiver Stress Process
The Stress Process Model provides a conceptual framework for understanding caregiver
stress (Pearlin, Mullan, Semple, & Skaff, 1990). The Stress Process Model was originally
formulated from a study of caregivers to persons with Alzheimer’s disease (Pearlin et al., 1990).
The main components of the Caregiver Stress Process Model are illustrated in Figure 1.1.
Background and context of the stress process includes demographic characteristics such
as age, gender, race and ethnicity, socioeconomic status (SES) characteristics, relationship and
caregiving history, and support program availability and access (Pearlin et al., 1990). Stressors
are categorized as either primary or secondary. Primary stressors including objective indicators
(i.e., cognitive status, problematic behaviors of the care recipient, and level of assistance needed
with Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) tasks)

4

and subjective indicators of stress (i.e., overload or burnout and relational depravation) (Pearlin
et al., 1990). Secondary stressors include role strain (i.e., family conflict, conflict between
caregiving and job duties, economic strain, and social changes or constriction) (Pearlin et al.,
1990). Outcomes in the model include well-being, health indicators, and changes or yielding of
the caregiver role (Pearlin et al., 1990).
Within the Stress Process Model, mediators of stress include resources such as coping
strategies and social support. Coping is viewed as a mediator of stress which impacts the primary
stressors, secondary role strains, secondary intrapsychic strains, and ultimately, the outcomes of
well-being, health, and possibly yielding, decreasing, or transferring of caregiver roles and
responsibilities (Pearlin et al., 1990). This dissertation will apply the stress process model to
examine the sociodemographic characteristics of caregivers (Chapter 2), sociodemographic
characteristics, coping, and well-being (Chapter 3), and role strain and support (Chapter 4).
In addition to the Stress Process Model, which provides a framework for the background
and context, primary and secondary stressors, and mediating inputs of caregiving stress, research
has found both positive and negative consequences from caregiving (Pinquart & Sörensen,
2003). These consequences can be considered outcomes of caregiving as described in the Stress
Process Model. The negative and positive outcomes of caregiving will be considered. First, the
negative consequences of family caregiving will be discussed in terms of economic, physical,
and mental health outcomes. Then the positive outcomes associated with caregiving will be
reviewed. For example, greater well-being has been associated with caregiving wherein
caregivers describe increased feelings of meaning, purpose, and self-efficacy.

5

Negative Consequences of Caregiving
Economic Consequences of Caregiving
In 2015, Lee, Tang, Kim, and Albert, employed a cross-lagged panel design in order to
examine the relationship between caregiving and financial well-being. For this study, data were
drawn from the Health and Retirement Study in 2006, 2008, and 2010 (N = 2,093). The study
found that female caregivers were more likely than their non-caregiver counterparts to be in
households with a lower income at later observation points. Furthermore, the study also found
the reciprocal relationship also existed wherein women with a lower household income at earlier
time points were subsequently more likely to take on caregiving responsibilities. (Lee et al.,
2015). This study points to the economic vulnerability faced by family caregivers.

Decreased Quality of Life
Decreased quality of life in regard to health outcomes for caregivers has been described
in many ways. Beginning with negative consequences, caregiving has been found to be
associated with increased depression, burden, and stress (Schulz, O’Brien, Bookwala, &
Fleissner, 1995); increased mortality (Schulz & Beach, 1999); increased physical morbidities
(Dassel & Carr, 2016; Vitaliano, Zhang, & Scanlan, 2003); increased suicidal ideation
(O’Dwyer, Moyle, Zimmer ‐Gembeck, & De Leo, 2013), and increased rates of dementia (Norton
et al., 2010). Each of these negative consequences will be considered in the following section,
describing the study and its relevant findings.
Increased Depression, Burden, and Stress
In 1995, Schulz, O’Brien, Bookwala, and Fleissner reviewed the literature over the
previous five-year period to explore dementia caregiving in relation to the impact of caregiving

6

on psychiatric and physical health and related morbidities. At the time, they identified and
included 41 articles in their review. This article includes a multi-page table that lists the authors,
sample, measures, and caregiver outcomes of each of the studies they reviewed.
Regarding psychiatric health, Schulz and colleagues found that those caring for persons
with Alzheimer’s disease experience more depressive symptomatology, higher levels of clinical
depression, and higher anxiety than non-caregiving counterparts. Regarding caregiving and
physical health, they found the results to be mixed. However, the researchers did find that
“Physical morbidity was associated with patient problem behaviors and cognitive impairment,
and with caregiver depression, anxiety, and perceived social support” (Schulz et al., 1995). In
conclusion, the researchers called out the need for additional research, research that would
ideally include both objective and subjective measures of health status. As we now progress
through additional and more recent studies, we will return to additional findings about physical
health outcomes of caregivers.

Increased Mortality
Another negative consequence of caregiving is increased mortality risk. In 1999, Schulz
& Beach used data from the CHS, which is an observational study of cardiovascular disease in
older adults, in order to explore the relationship between caregiving and mortality (Schulz &
Beach, 1999). The participants included 392 spousal caregivers and 427 non-caregivers ranging
in age from 66 to 96 years old (mean age 79.5). The sample population was divided into four
groups, as follows: “1) spouse not disabled; 2) spouse disabled and not helping; 3) spouse
disabled and helping with no strain reported; or 4) spouse disabled and helping with mental or
emotional strain reported” (Schulz & Beach, 1999).

7

At a four-year follow-up interval, 103 of the participants had died. Study participants
who were caregivers and who reported experiencing mental or emotional strain had a mortality
risk that was 63% higher than those in the non-caregiver control group, adjusting for disease and
sociodemographic factors. It is important to note that caregivers not experiencing strain and
spouses with disabled partners to whom they were not providing care, did not experience
increased mortality rates. The researchers concluded that “caregivers who report strain associated
with caregiving are more likely to die than non-caregiving controls” (Schulz & Beach, 1999). In
part, this begins to fill the research gap previously identified by Schulz calling for more studies
exploring health morbidities of caregivers.

Increased Physical Morbidities
In 2003, Vitaliano, Zhang, & Scanlan conducted a meta-analysis of 23 studies to examine
the research question “is caregiving hazardous to one’s physical health?” In the meta-analysis,
physical health of caregivers of persons with dementia was compared to demographically similar
non-caregivers. Across 11 health categories, the researchers found that caregivers had a “slightly
greater risk for health problems than did non-caregivers” (Vitaliano et al., 2003).
Since the 2003 Vitaliano, et al. study, more exploration has been done to investigate the
linkages between caregiving and increased health problems and physical morbidities. Using data
from the Health and Retirement Study (HRS), Dassel and Carr used six waves of “core data”
(baseline) and four waves of “exit data” to look at frailty rates in surviving spouses who provided
care to persons with and without dementia. Frailty was assessed using the Frailty Index, which
includes measures of “chronic diseases, mobility, functional status, depressive symptoms, and
subjective health” (Dassel & Carr, 2016).

8

Results of the study indicated that caregivers caring for persons with dementia had odds
40.5% higher of increased frailty at the time of their spouse’s death and 90% higher odds of
increased frailty at the time point two years after the spouse’s death compared with persons
providing care to people who did not have dementia (Dassel & Carr, 2016). These results are
quite striking and add to our understanding of under what circumstances caregiving puts the
caregiver at higher risk for health problems of their own.

Increased Suicidal Ideation
In a cross-sectional study that built upon two previous smaller studies, researchers
O’Dwyer, Moyle, Zimmer ‐Gembeck, and De Leo examined the relationship between suicidal
ideation and caregivers of people with dementia in order to identify protective and psychosocial
risk factors (2016). In this most recent study, participants were 566 family caregivers recruited to
participate in an online and hard copy survey about the “physical and emotional well-being of
carers” (O’Dwyer et al., 2016). This particular survey included “measures of suicidality, self-
efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies,
and social support.”
Results indicated that in the past year, 16% of family caregivers had contemplated suicide
(suicidal ideation). Further, depression was identified as a risk factor for suicidal ideation, while
increased age and reasons for living were found to be protective factors against suicidal ideation
among family caregivers for persons with dementia (O’Dwyer et al., 2016).
Increased Dementia Risk
A 2009 poster presentation given at a conference of the Alzheimer’s Association by
Norton, Smith, Ostbye, Tschanz, Corcoran, Schwartz, and Welsh-Bohmer considered dementia

9

risk of caregivers. Data were taken from the Cache County Study of Memory, Health and Aging
and included 2,442 subjects, comprised of 1,221 dementia caregiving dyads. This was a cohort
study that explored spousal dementia caregiving as a risk factor for the caregiver to have
dementia. Results found that “dementia caregiving increases dementia risk in spouse caregivers,
net of the effect of key factors associated with dementia risk and socioeconomic status shared by
both spouses” (Norton et al., 2009).
Finally, we turn to caregiver burden. In 2014, the Journal of the American Medical
Association (JAMA) published a review of meta-analyses and systematic reviews that examined
negative outcomes of caregiver burden (Adelman, Tmanova, Delgado, Dion, & Lachs, 2014).
The authors reviewed eight studies, seven which included caregivers of persons with dementia
and one study that examined outcomes for caregivers of persons with cancer. In their analysis,
they found that risk factors of increased caregiver burden included fewer years of education
completed, being female, living with the care recipient, more time spent in tasks related to
caregiving, depression, increased financial stress, isolation, and lack of choice in taking on the
caregiving role (Adelman et al., 2014). Given that the audience for this review of meta-analyses
is physicians, they conclude by offering suggestions that doctors should seek to identify
caregiver burden among their patients and their caregivers and that interventions should be
tailored to the specific circumstances of the caregiver.
In 2017, Lee, Martin, and Poon considered predictors of caregiver burden (Lee, Martin,
& Poon, 2017). Their aim was to examine the primary stressors of the need for care and
categorized these into objective and subjective measures (Lee, Martin, & Poon, 2017). Level of
need for ADL assistance was used as the objective indicator of care need and the caregiver’s
perception of the care recipient’s status in regard to subjective health, negative affect, and

10

loneliness were the subjective indicators. The researchers’ hypothesized that: 1) the physical,
emotional, and social status significantly differs between 80 year-olds and 100 year-old care
recipients; 2) that the care recipients’ negative affect would predict caregiver burden; and 3) that
the caregivers’ subjective report of the physical, social, and emotional care needs would be a
better predictor of burden than the care recipients’ report.
Data were collected from the Georgia Centenarian Study and included 199 octogenarians,
centenarians, and their caregivers. Caregiver burden was assessed using the Zarit Burden
Interview, with higher scores representing higher burden. To test if the caregivers’ perception of
their care recipients’ loneliness predicted caregiver burden blocked multiple regression was used.
The researchers found that increased burden predicted by the caregivers’ negative perceptions of
the care recipients’ well-being, caregiver loneliness, and negative affect predicts higher caregiver
burden (Lee, Martin, & Poon, 2017).

Positive Aspects of Caregiving
Caregiving has also been found to be associated with positive outcomes. For example,
caregiving has been found to provide the caregiver with greater feelings of meaning and purpose,
increased self-efficacy, lower level of anxiety, and other positive effects that are largely
described by qualitative work. These studies are considered below.

Greater Meaning and Purpose
There are additional protective factors regarding the caregiving role that have also been
examined. Russell used qualitative research techniques to interview 14 male caregivers and, as a
result, gained insight into their feelings about caring for a spouse with dementia, their perceived

11

strengths, and limitations. In examining men’s views of their caregiving role, three main themes
resulted: 1) feeling isolated and invisible in their caregiving role; 2) utilizing a style of
caregiving involving management principles and nurturing; and 3) personal feelings of devotion,
commitment, and responsibility (Russell, 2001). Greater feelings of devotion, commitment, and
responsibility underline the role caregiving can play in producing feelings of greater meaning
and purpose.
Published in 2016, Cheng and colleagues at the Hong Kong Institute of Education
conducted a qualitative study in which they reviewed the voice journal recordings of 57 family
caregivers to persons with dementia in Hong Kong (Cheng, Mak, Lau, Ng, & Lam, 2016). Their
research aim was specifically to explore positive aspects of caring for persons with dementia,
and the participants were given a tape recorder with the instructions to record positive gains
resulting from their caregiver role. Entries were collected for an eight-week period, with a total
of 669 diary recordings. The themes were then coded by two independent reviewers. In total ten
themes emerged. Similar to the Russel study, thematic analysis identified that caregivers felt a
greater “sense of purpose and commitment to the caregiving role” (Cheng et al., 2016).
Using qualitative research methods, Meisner and Binnington discussed positive aspects
of family caregiving in a 2017 letter to the editor entitled, “I'm So Glad You're Here: Positive
Aspects of Informal Caregiving,” which appeared in the Journal of the American Geriatrics
Society. Researchers used a convenience sample of caregivers, recruited through purposive
sampling. Participants, comprised of 11 female family caregivers ranging in age from 46 to 58,
were asked open-ended questions about their positive experiences as caregivers. In total five
themes were found about the caregivers’ positive experience of being a caregiver. The first

12

theme uncovered by the research was that of greater personal fulfillment. Participants described
caregiving in terms of feeling joy, privileged, and grateful (Meisner & Binnington, 2017).

Increased Self-Efficacy (Positive Thinking and Motivation)
Self-efficacy is defined as “the perceived ability to successfully manage the demands of a
specific situation;” further it is a psychological construct that is “amenable to change” (Semiatin
& O’Connor, 2012). Because self-efficacy is malleable, it may be particularly important to
determine if there any linkages to the role it can play in the experience and perception of the role
of caregiving. Participants were caregivers recruited from health care clinics in Boston from
patients who had been diagnosed with Alzheimer’s disease and who had been enrolled in a
caregiver intervention. A total of 57 caregivers participated in the study.
Using bivariate analysis, the researchers sought to explore if there is a relationship
between self-efficacy (measured using relational, self-soothing, and instrumental self-efficacy
scores) and positive aspects of caregiving among those providing care to people with
Alzheimer’s disease. Next, using multivariate analysis, the researchers wanted to know if what
proportion of the variance in positive aspects of caregiving would be explained by self-efficacy,
holding other variables constant.
The study found that self-efficacy was positively correlated with positive aspects of
caregiving, and that neuro-psychiatric symptom frequency and depression were both negatively
correlated to positive aspects of caregiving (Semiatin & O’Connor, 2012). This suggests that
caregivers with higher self-efficacy may be able to utilize coping mechanisms, which in turn
allow them to better manage negative emotions. Better self-efficacy may also lead to better
outcomes on clinical interventions.

13

Another study similarly found that caregivers experienced positive feelings related to
caregiving in terms of greater sense of mastery of skills related to caring for the care recipient
(Cheng, Mak, Lau, Ng, & Lam, 2016). Participants in this qualitative study also identified
feeling useful in being able to help other caregivers. These were described as feelings of
empowerment and usefulness in helping others in similar caregiving situations. They also
“learned to let go” thus releasing themselves from subjective self-pressure to perform the
caregiving tasks and accepting the cognitive changes in the care recipient (Cheng et al., 2016).
Meisner and Binnington also found themes of caregivers’ feeling that they had improved
abilities (2017). Specifically, they cited that caregivers described “better time management and
task-prioritizing skills,” which included examples such as being better organized, focusing on
priorities, and being more patient even during times of stress (Meisner & Binnington, 2017).

Lower Anxiety and Bother and Higher Religiosity
In a 2004 study, Roff, Lee, Burgio, Gitlin, Nichols, Chaplin, and Hardin examined
positive aspects of family caregiving among caregivers caring for persons with Alzheimer’s
disease (2004). The participants were a total of 618 caregivers, with 343 Caucasians and 275
African Americans who were part of the Resources for Enhancing Alzheimer’s Care Health
(REACH) study sites in the following three cities: Birmingham, Memphis, and Philadelphia.
Data were collected through in-home interviews of the participants at baseline, six, 12, and 18
months.
The specific measures of the study included the dependent variable of positive aspects of
caregiving; demographic variables of age, race, education, relationship to the care recipient,
length of time living with the care recipient, and SES. SES was measured using employment

14

status of the caregiver and spouse and combining it with the Nam–Powers Socioeconomic Status
Scores and selecting the higher of the two numbers on a range from 0 to 100. Independent
variables included: caregiver anxiety, caregiver depression, religiosity (importance of religion or
spirituality, attendance at religious services, and frequency of prayer or meditation), behavioral
bother, and social support (Roff et al., 2004).
The results of the study found that African American caregivers had lower anxiety and
bother and higher religiosity than did Caucasian caregivers (Roff et al., 2004). Bother was
measured using the Revised Memory and Behavior Problem Checklist (RMBPC) which asks
about problem behaviors displayed by the care recipient in the past week in three areas: memory,
depression, and disruptive behaviors (Roff et al., 2004). Additionally, the researchers found that
“higher religiosity is associated with more favorable appraisals of caregiving” (Roff et al., 2004).
It is also important to note the variables in which African Americans and Caucasians did not
differ, and therefore which aspects did not provide explanatory variables. Specifically, this study
found no differences between reported levels of social support nor of depression. There were
also no significant differences in education levels by race (Roff et al., 2004).
Recognizing the importance that religion plays in the lives of African Americans can also
have implications for interventions. For example, offering respite for the purpose of allowing
caregivers to attend religious services may help better support caregivers in their role.

Additional Positive Themes
Family togetherness was another theme described through the qualitative work of
Meisner and Binnington. They noted that caregivers described the act of caregiving as bringing
the family closer together, including stronger relationships with both the care recipient and

15

siblings (Meisner & Binnington, 2017). Cheng et al., also described these feelings of
togetherness as bonding with the care recipient and treasuring the time spent with their loved one
(2016).
Additional thematic areas described as part of positive aspects of caregiving included
increased empathy toward others and an interest in activism (Meisner & Binnington, 2017).
Examples of activism included caregivers recognizing and promoting the rights of older adults
and wanting to speak up to improve care for older adults at a societal level. I think empathy and
activism are emerging themes regarding positive aspects of caregiving that may be explored
further in future research. An important conclusion of the work done by Meisner and Binnington
is that having more balance between both the positive and the negative perceptions of caregiving
may contribute improving the quality of life for caregivers and for the care that older adults
receive from their caregivers.

National Survey Data on Caregiving
Several national surveys include questions about providing care to older adults, with
various definitions and inclusion criteria (Giovannetti & Wolff, 2010). Estimates of the number
of caregivers in the United States range based on the definition of caregiver and timeframe
utilized in the survey design.

National Alliance for Caregiving/Caregiving in America Survey (NAC)
The National Alliance for Caregiving (NAC) survey is a telephone survey that asks about
providing care over the past year. NAC is considered a “caregiver self-identification survey” as it
asks individuals in the general population if they identify as a caregiver and then collects

16

information from them directly (Giovannetti & Wolff, 2010). In 2015 the NAC & AARP survey
included interviews with 1,248 caregivers (NAC & AARP, 2015). Caregivers were defined as
follows, “At any time in the last 12 months, has anyone in your household provided unpaid care
to a relative or friend 18 years or older to help them take care of themselves? This may include
helping with personal needs or household chores. It might be managing a person's finances,
arranging for outside services, or visiting regularly to see how they are doing. This adult need not
live with you.” (NAC & AARP, 2015). While the NAC survey intentionally oversamples ethnic
and racial minority populations, it has a more limited sample size compared with BRFSS.

Health and Retirement Study (HRS)
The Health and Retirement Study (HRS) is a longitudinal panel study that surveys a
representative sample of approximately 20,000 people over age 50 in the United States (HRS,
2020). The survey has been administered every two years since 1992 (Sonnega, Faul, Ofstedal,
Langa, Phillips, Weir, 2014). HRS interviews both the respondent (care recipient) and the helper
(caregiver) (HRS Codebook, 2018). HRS includes comprehensive health questions about
demographics, family structure, cognition, physical health, insurance employment pension, and
retirement (HRS Codebook, 2018). Regarding the need for assistance from a caregiver, the
interviewer asks, “Let's think for a moment about the help you receive that we just talked about.
During the last month, on about how many days did [Helper Name] help you?” (HRS Codebook,
2018). In addition, the survey asks about the relationship of the helper, frequency (days per
week) and intensity (hours) of help, and if money is paid for this help (HRS Codebook, 2018).
Of the helper, the survey collects information about their relationship, ADLs and IADLS, and
frequency and intensity of help (HRS Codebook, 2018). Although data are collected

17

longitudinally in HRS, it does not reach as large of a sample size as BRFSS, nor does HRS
collect as much information about the caregiver. In BRFSS, the caregiver is also the primary
respondent of the survey.

Behavioral Risk Factor Surveillance System (BRFSS)
The Behavioral Risk Factor Surveillance System BRFSS is a telephone survey
administered annually by the Centers for Disease Control and Prevention (CDC) to “collect state
data about U.S. residents regarding their health-related risk behaviors, chronic health conditions,
and use of preventive services” (CDC, 2017). The survey was first administered in 1984, with 15
states participating, and it is now administered in 50 states, Washington D.C., and in three U.S.
territories. More than 400,000 interviews are completed each year as part of the survey (CDC,
2017). Respondents are adults age 18 and older (CDC, 2019).
The BRFSS Caregiver module is a 10-item optional module that was first added to the
survey in 2009. In 2009, Illinois, Louisiana, New York, Ohio, and the District of Columbia
participated in the caregiver module (CDC, 2017). During 2015, 2016 and 2017, 46 states
participated in the BRFSS caregiver module.
The prologue statement to the BRFSS Caregiver module is “People may provide regular
care or assistance to a friend or family member who has a health problem or disability” (CDC,
BRFSS Codebook, 2018) Then respondents are asked, “During the past 30 days, did you provide
regular care or assistance to a friend or family member who has a health problem or disability?”
This manner of question also classifies BRFSS as a caregiver self-identification survey
(Giovannetti & Wolff, 2010). Additional questions in the module inquire about the relationship
to the person to whom care is provided; length of care (less than 30 days to more than 5 years);

18

average hours per week of care provided (up to 8 hours to 40 hours or more); major health
problem of the person being cared for (e.g., arthritis, asthma, cancer, respiratory conditions,
dementia, heart disease, HIV, mental illness, kidney or liver problems, etc.); if help was provided
with personal care (ADLs); if help was provided with household tasks (IADLs); what type of
support is needed that the caregiver is not currently getting; and if they expect to have a friend or
family member who will need care in the next two years (CDC BRFSS Codebook, 2018).

Dissertation Structure
The following chapters in the dissertation describe three empirical studies, which are
framed by an introduction and conclusion. Following the introduction, the first study describes
the prevalence and demographic characteristics of family caregivers in the United States.
Shifting demographic trends and changing societal norms and expectations are increasing the
need for family caregivers. In order to describe the characteristics of caregivers, the Caregiver
module of the Behavioral Risk Factor Surveillance System (BRFSS) from 2015-2017, a
nationally representative sample of adults age 18 and over in the United States will be used to
explore the prevalence of caregiving and demographic descriptions of family caregivers by
generational cohort. The second study explores differences in caregiver mental health outcomes
across the generational cohorts. While previous studies have addressed the effects of caregiving
on mental health, there has not been a focus on differences among generational cohorts of
caregivers of older adults, i.e., Millennial (born 1981-1996), Generation X (born 1965-1980),
Baby Boomer (born 1946-1964), and Silent Generation (born 1928-1945). As the Millennial
caregiver population grows in parallel with the population of older adults and their increased
needs, it is increasingly important to understand Millennial responses to caregiving. Negative

19

binomial regression (NBR) using data from the nationally representative BRFSS survey from
2015-2017 (n=50,745) will be used to compare and contrast generational differences in self-
perceived mental health status among caregivers. The third study will describe in detail how
older adults’ caregivers cope with strain in their role. Previous qualitative studies have described
themes in the experience of caregiving; however, they have not focused on how caregivers
respond to strain in their relationships with the care recipients. Understanding responses to strain
can help inform policy and programs aimed at supporting caregivers of older adults. To gain
understanding about the strategies that caregivers use to cope with strain in their role, nine focus
group discussions with a purposeful sample of racially and ethnically diverse family caregivers
were conducted in Los Angeles. Conventional content analysis will be applied to findings from
these focus groups to understand the various mechanisms that caregivers employ to cope with
strain and tension in the caregiving relationship. Chapter five will summarize the findings and
implications, discuss what the dissertation contributes to the literature, and make
recommendations for future research. Taken together, these studies will shed light onto the
nature and experience of family caregiving, and will identify characteristics and risk factors that
help target caregivers who may be most in need of additional support.

20

Figure 1.1 Stress Process Model for Caregiver Stress (source: Pearlin et al., 1990).

Caregiving Background
& Context:
- Sociodemographics
- History of Care
Primary
Stressors
Secondary
Stressors:
Role Strains
Secondary
Stressors:
Intrapsychic Strains
Outcomes
Objective
Stressors:
- Cognitive
Status
- ADLs
- Behavior
Problems
Subjective
Stressors:
- Overload
- Loss of
Relationship
- Stress
Appraisals
- Family
Conflict
- Job-care
Conflict
- Economic
Problems
- Mastery
- Self-Esteem
- Loss of Self
-Competence
Gain
- Well-being
- Health
- Yielding of
Role
Resources:
- Coping
- Social Support

21

Chapter 2: Who Shoulders the Burden of Care? Prevalence and
Characteristics of Family Caregivers in the United States

Introduction
Two main factors are increasing the demands on family caregivers in the United States:
changing family structures and increased life expectancy with increased years of disability. A
review of prevalence studies on family caregiving shows that women are more likely to be in a
caregiving role; this has clear underpinnings in cultural and societal expectations of women. For
example, women often take on the role of kin-keepers within the family structure (Moen, 1996).
Women are more likely than are men to provide informal care to their spouses (Glauber & Day,
2018). Further, cultural norms in the United States assign women to caretaking roles, in terms of
expectations to provide care for both children and family members, while assigning the role of
breadwinner to men (Moen, 1996). More recent studies have also found that women aged 50 to
61 caring for parents and/or grandchildren are less likely to be participating in the paid labor
force than men (Lee & Tang, 2015). Understanding health through the life course is also shaped
by race, ethnicity, and education (Moen, 1996).
Generational structures have been changing. Since 1900, an increasing life expectancy
coupled with decreasing fertility rates have altered the number and nature of generational ties
among family members. These demographic shifts have resulted in what Moen termed the
“generational bean pole” in contrast to the expansive “family tree” structures of the past (1996).
With the decrease in fertility rates, women have fewer siblings with whom to share caregiving
responsibilities and tend to feel less positive about their relationship with their own mothers
(Moen, 1996). And the growing rates of childless, never-married older persons suggest that a
larger portion of the population will be disadvantaged by the size of their social support network

22

on whom they can call upon to provide care when they themselves are facing illness or disability
(Venn, Davidson, & Arber, 2011).
The need for care is increasing as both life expectancy and disability are increasing
(Crimmins & Beltrán-Sánchez, 2010). For example, between 1998 and 2006 U.S. males gained a
year of life expectancy from 81 years to 82 years; however, they added a year and half during
which they lack mobility functioning, from 2.9 years to 4.5 years with mobility functioning.
Mobility functioning was determined using walking 1/4 mile; walking up 10 steps; standing or
sitting for 2 hours; and standing, bending, or kneeling without the use of special equipment
(Crimmins & Beltrán-Sánchez, 2010). For women, during the same time period, the gain was a
half year in terms of life expectancy from 84.2 years to 84.7 years, but they also added an
additional year with disease and fully a year and a half without mobility functioning (Crimmins
& Beltrán-Sánchez, 2010). These added years of disease and disability increase the need for
informal caregiving and support from family and friends.
Economic forces and financial circumstances have important implications for those who
provide care. In old age, women are more vulnerable to poverty than men (Bernasek & Schwiff,
2001). Furthermore, women “earn less than men over their working lives and accumulate less
savings for retirement” (Bernasek & Schwiff, 2001). These savings need to be spread over a
longer period of time and cover a higher burden of health care expenditures since women tend to
live longer and have more chronic conditions than men (Bernasek & Schwiff, 2001). Availability
of economic resources – or the lack thereof – contributes to sources of financial strain for female
caregivers (Rainville, Skufca, & Mehegan, 2016).
Although the prevalence of caregiving has been reported, a clearer picture of who
provides care in the U.S. is needed. The racial and ethnic composition of caregivers is not clear

23

(NASEM, 2016; NAC & AARP, 2015; TransAmerica Institute, 2017). The Stress Process Model
describes how a variety of factors interact to produce outcomes such as changes in well-being,
health, and shifting roles for caregivers (Pearlin et al., 1990). Understanding the context and
background of the caregiving relationship is central to understanding changes in outcomes.
Specifically, differences in gender, ethnicity, age, and employment status are woven throughout
the Stress Process Model (Pearlin et al., 1990). Additionally, factors regarding the history and
circumstances of care, such as the relationship to the care recipient and the length of care also
influence outcomes (Pearlin et al., 1990). Caregiving background and context as highlighted as
part of the Stress Process Model is shown in Figure 3.1. The present study seeks to understand
the prevalence of caregiving in the U.S., the demographic differences between caregivers and
non-caregivers, who provides care based on relationship to the care recipient, and the length of
care.

Methods
Data
The data source for the present study is the Caregiver module of the Behavioral Risk
Factor Surveillance System (BRFSS) gathered from 2015-2017, which represents the three most
recent years of available data. The BRFSS is a telephone survey administered annually by the
Centers for Disease Control and Prevention (CDC) to “collect state data about U.S. residents
regarding their health-related risk behaviors, chronic health conditions, and use of preventive
services” (CDC, 2017). The survey was first administered in 1984, with 15 states participating,
and it is now administered in 50 states, Washington D.C., Puerto Rico, the U.S. Virgin Islands,
Guam, American Samoa, and Palau (CDC, 2019). More than 400,000 interviews are completed

24

each year as part of the BRFSS (CDC, 2017). Respondents are adults age 18 and older (CDC,
2019).
The BRFSS Caregiver module is a 10-item optional module that was first added to the
survey in 2009. In 2009, Illinois, Louisiana, New York, Ohio, and the District of Columbia
participated in the caregiver module (CDC, 2017). For the present study, data from 46 states that
participated in the BRFSS caregiver module in 2015, 2016, and 2017 were used. If a state
participated more than once during the study period, the most current year’s data were included
in the analytic sample. Table 2.1 displays the survey version and year that each state participated
in. Data were then appended in a stepwise fashion, adding state specific data first and then year-
by-year data. For a complete listing of states by year included in the sample, refer to Table 2.2.
In order to make population estimates, state-specific weights were applied to each state
grouping. Then the survey command was used when conducting the analyses.

Analysis
Analysis was done using STATA/MP 15.1. Variables that were included in the analysis
were: age, race, education, employment status, number of children living in household, and self-
rated general health. The total sample size was 246,028.
Age was characterized by generational cohort by subtracting the respondents’ age from
the survey year to find birthyear. The birthyear result was used to group respondents into the
following categories: Generation Z (born 1997 – 2012); Millennial (1981 – 1996); Generation X
(1965 – 1980); Baby Boomer (1946 – 1964); and Silent Generation (1928 – 1945) (Pew
Research Center, 2019). Race/ethnicity was categorized as White, non-Hispanic; Black, non-
Hispanic; “other” race, non-Hispanic; multiracial, non-Hispanic; or Hispanic.

25

Children living in the household was coded as a dichotomous variable (0 = no children
living at home; 1 = one or more children living at home). Self-rated general health was coded as
an ordinal variable (1 = poor, 2 = fair, 3 = good, 4 = very good, 5 = excellent).
Caregiver status was asked in the survey as “During the past 30 days, did you provide
regular care or assistance to a friend or family member who has a health problem or disability?”
and was coded (1 yes/0 no). If respondents endorsed provided care in the last 30 days, they were
then asked the Caregiver Module of questions. Caregiver relationship was asked as “What is
his/her relationship to you?” (mother, father, mother-in-law, child, husband, wife, same-sex
partner, brother/brother-in-law, sister/sister-in-law, grandmother, grandfather, grandchild, other
relative, non-relative/friend). Caregiving length was queried by the question: “For how long have
you provided care for that person? Would you say…” (less than 30 days, 1 month to less than 6
months, 6 months to less than 2 years, 2 years to less than 5 years, 5 years or more).
Logistic regression was used to determine how missingness on being a caregiver varied
by the sample characteristics; data are available upon request. Complete case analysis was
conducted.

Data Analysis
Univariate χ
2
tests of demographic characteristics comparing caregivers to non-caregivers
were conducted. Characteristics included for comparison were race, age, educational attainment,
employment, children in household, and self-rated general health. A bivariate χ
2
test measured
whether care intensity varies by the caregiver’s relationship to the care recipient.

26

Results
Caregivers represent 20.7% of the population (N = 246,028; 95% CI 20.3 – 21.2%); or
approximately 1 in 5 people are caregivers. Of a population size of 192,849,632, this equals
39,919,874 caregivers. Results are shown in Table 2.3.
Table 2.4 shows the demographic overview of family caregivers. A total of 51.5% of the
overall sample was female. Of caregivers, 58.5% were female and 41.5% were male. Of non-
caregivers, 49.7% were female and 50.4% were male (X
2
= 1277.4, p < .001)
In total, 63.7% of the sample was comprised of White, non-Hispanic persons; 11.3%
were Black, non-Hispanic persons; 1.6% were Multiracial, non-Hispanic persons; 6.2% were
other, non-Hispanic persons; and 17.2% were Hispanic persons. However, of caregivers, 67.2%
were White, non-Hispanic persons; 12.9% were Black, non-Hispanic persons; 2.1% were
Multiracial, non-Hispanic persons; 4.0% were other, non-Hispanic persons; and 13.8% were
Hispanic persons. In contrast, of those who had not provided care in the past 30 days (non-
caregivers), 62.8% were White, non-Hispanic persons; 10.9% were Black, non-Hispanic persons;
1.4% were Multiracial, non-Hispanic persons; 6.7% were other, non-Hispanic persons; and
18.1% were Hispanic persons (X
2
= 1292.7, p < .001).
Turning to generational cohort, of caregivers, 23.7% were Millennials; 26.4% were
Generation X; 36.1% were Baby Boomers; 10.7% were Silent Generation; and 3.1% were
Generation Z. Of non-caregivers, 27.4% were Millennials; 25.7% were Generation X; 29.9%
were Baby Boomers; 13.3% were Silent Generation; and 3.7% were Generation Z (X
2
= 961.0, p
< .001).
Of caregivers, 11.2% has less than a high school education; 27.8% had high school or
equivalent; 36.0% had some college; and 24.9% were college graduates (X
2
= 812.1, p < .001).

27

Regarding employment, of caregivers, 55.0% are employed for wages; 7.0% are out of work;
7.4% are homemakers; 4.6% are students; 18.2% are retired; and 7.9% are unable to work (X
2
=
471.2, p < .001). Those who are out of work, homemakers, students, and unable to work
comprise greater proportions of caregivers.
People with no children living in the household comprised 63.1% of the overall sample.
Of caregivers, 65.5% did not have children living in the home and 34.5% had one or more
children living in the household (X
2
= 156.6, p < .001).
Turning to self-rated general health, of caregivers, 5.0% were in poor health; 15.2% were
in fair health; 32.8% were in good health; 31.6% were in very good health; and 15.4% were in
excellent health (X
2
= 501.6, p < .001).
Those with greater representation of caregiving include White, Black, and Multiracial
non-Hispanic persons; persons in the Generation X and Baby Boomer generational cohorts; those
with some college; people who are out of work, homemakers, and persons who are unable to
work; people with no children living in the household; and those in poor, fair, or good health.

Caregiving Length and Relationship
In total, 21.6% of caregivers in the sample were caring for their mother, 16.4% for a
friend or non-relative, and 10.7% for their husband. Of those caring for more than five years,
22.8% have been caring for their mother, 18.9% for a child, and 12.9% for their husband. Of
those caring for someone for two to five years, 26.8% have been caring for their mother and
12.0% have been caring for their husband. For those who are new to the caregiving role, and
have been caring for less than 30 days, 15.6% have been caring for their mother and 25.8% have
been caring for a non-relative or friend. Results are shown in Table 2.5.

28

Discussion
These data provide a recent snapshot of caregivers in the United States. Based on the
survey results, we found that approximately 1 in 5 adults provided care to a friend or loved one
in the past 30 days. These results are similar to Pavalko’s finding that approximately 21% of
adults were informal caregivers (Pavalko, 2011).
About 1 in 5 caregivers are providing care to their mother. And, of the caregivers who
have been providing care the longest, over five years, 22.8% have been caring for their mother.
The nature of the relationship between mother and an adult child who is providing care is an
important contextual factor to consider as part of the Stress Process Model (Pearlin et al., 1990).
The context of the relationship prior to the onset of caregiving interacts with all of the other
factors and stressors in the Stress Process Model to ultimately impact outcomes, which may
include changes to health, well-being, and the need to yield or change the caregiving role
(Pearlin et al., 1990).
Understanding who provides care is critical for targeting services and supports for family
caregivers. For both cultural and societal reasons, women have traditionally shouldered the
majority of care in the United States. An important future direction will be to compare
proportions of men and women, and different age groups, to see who is providing care to family
and friends. With shifting cultural expectations, more men may take on the caregiving role in
current and future generations. As more and more people live to older ages, that will place
additional demands on family and friends to provide informal care in the community.

29

Limitations
Although the data set include 46 states, a limitation of this study is that four states did not
participate in the optional Caregiver module. Further, because this dataset is cross sectional,
longitudinal research is needed to understand the long-term implications of caregiving in terms
of both benefit and burden to the caregiver. Longitudinal data are needed to understand the effect
of caregiving on health and financial outcomes for the caregiver.

Conclusion
Given the increasing cost of long-term services and supports coupled with increasing life
expectancy and higher risk for disability in later life, the role of caregivers will become
increasingly important. Understanding the characteristics of caregivers provides a critical step in
targeting services and supports. Directing supports for caregivers have implications for
healthcare and community-based organizations, who can better identify and link caregivers to
services that will decrease burden and improve outcomes for caregivers and their care recipients.

30

Figure 2.1 Stress Process Model for Caregiver Stress (source: Pearlin et al., 1990).

Caregiving Background
& Context:
- Sociodemographics
- History of Care
Primary
Stressors
Secondary
Stressors:
Role Strains
Secondary
Stressors:
Intrapsychic Strains
Outcomes
Objective
Stressors:
- Cognitive
Status
- ADLs
- Behavior
Problems
Subjective
Stressors:
- Overload
- Loss of
Relationship
- Stress
Appraisals
- Family
Conflict
- Job-care
Conflict
- Economic
Problems
- Mastery
- Self-Esteem
- Loss of Self
-Competence
Gain
- Well-being
- Health
- Yielding of
Role
Resources:
- Coping
- Social Support

31

Table 2.1. States Included in Analysis by Year

2015 2016 2017
Combined Land Line and
Cell Phone data
Alabama, Hawaii,
Idaho, Illinois,
Indiana, Iowa,
Kentucky, Louisiana,
Mississippi, New
Jersey, Oregon,
Pennsylvania, South
Carolina, Tennessee,
Virginia, West
Virginia, Wisconsin,
Wyoming
Arkansas, District of
Columbia, Georgia,
Minnesota, Missouri,
Montana, Nevada,
New Jersey, North
Dakota, Oregon,
Puerto Rico, South
Dakota, Tennessee
Alaska, Hawaii, New
Mexico, Oregon,
Rhode Island
Combined Land Line and
Cell Phone data, version 1
Maine, Maryland,
Nebraska
Ohio, Utah Kansas, Michigan,
New Jersey
Combined Land Line and
Cell Phone data, version 2
Florida, New York,
Utah
Arizona, California,
Connecticut, Texas
New York,
Oklahoma, Utah
Combined Land Line and
Cell Phone data, version 3

Colorado, New York Maryland

Note. *strikethrough states represent states not included because they were included in an earlier
year.

32

Table 2.2 Included States by Year

State Year
Alabama 2015
Alaska 2017
Arizona 2016
Arkansas 2016
California 2016
Colorado 2016
Connecticut 2016
District of Columbia 2016
Florida 2015
Georgia 2016
Hawaii 2017
Idaho 2015
Illinois 2015
Indiana 2015
Iowa 2015
Kansas 2017
Kentucky 2015
Louisiana 2015
Maine 2015
Maryland 2017
Michigan 2017
Minnesota 2016
Mississippi 2015
Missouri 2016
Montana 2016
Nebraska 2015
Nevada 2016
New Jersey 2017
New Mexico 2017
New York 2017
North Dakota 2016
Ohio 2016
Oklahoma 2017
Oregon 2017
Pennsylvania 2015
Puerto Rico 2016
Rhode Island 2017
South Carolina 2015
South Dakota 2016
Tennessee 2016
Texas 2016
Utah 2017
Virginia 2015
West Virginia 2015
Wisconsin 2015
Wyoming 2015

33

Table 2.3 Caregiver Proportion Estimate

Caregiver Proportion Estimate
BRFSS 2015-2017
N = 246,028
Population size = 192,849,632

Caregiver

95% Confidence
Interval
No 79.3%

78.8% 79.7%
Yes 20.7%

20.3% 21.2%

34

Table 2.4 Demographic Overview of Family Caregivers
N = 246,028

Caregivers

Non-Caregivers

Total

Percent
Unweighted
Count

Percent
Unweighted
Count

X
2

Sex

Male 41.5% 18,738

50.4% 85,373

48.5%

1277.4 ***
Female 58.5% 33,351

49.7% 108,566

51.5%

Race/Ethnicity

White, Non-Hispanic 67.2% 40,308

62.8% 149,844

63.7%

1292.7 ***
Black, Non-Hispanic 12.9% 5,060

10.9% 15,928

11.3%

Other, Non-Hispanic 4.0% 2,141

6.7% 8,483

6.2%

Multiracial, Non-Hispanic 2.1% 1,269

1.4% 3,767

1.6%

Hispanic 13.8% 3,310

18.1% 15,917

17.2%

Cohort

Generation Z 3.1% 537

3.7% 2,643

3.6%

961.0 ***
Millennial 23.7% 5,963

27.4% 27,623

26.6%

Generation X 26.4% 11,073

25.7% 38,425

25.9%

Boomer 36.1% 25,304

29.9% 78,760

31.2%

Silent 10.7% 9,212

13.3% 46,488

12.8%

Education

Less than High School 11.2% 3,114

14.5% 15,349

13.8%

812.1 ***
High School or Equivalent 27.8% 14,271

28.3% 55,529

28.2%

Some College 36.0% 16,213

30.2% 52,726

31.4%

College Graduate 24.9% 18,491

27.1% 70,335

26.6%

Employment

Employed for Wages 55.0% 25,568

56.9% 94,147

56.5%

471.2 ***
Out of Work 7.0% 2,664

5.3% 7,274

5.6%

Homemaker 7.4% 3,390

6.4% 10,922

6.6%

Student 4.6% 1,024

5.7% 4,664

5.4%

Retired 18.2% 15,263

19.0% 62,469

18.8%

Unable to Work 7.9% 4,180

6.8% 14,463

7.0%

Children in Household

No children 65.5% 38,664

62.5% 145,125

63.1%

156.6 ***
1 or more 34.5% 13,425

37.5% 48,814

36.9%

General Health (self-rated)

Poor (1) 5.0% 2,683

4.8% 10,960

4.8%

501.6 ***
Fair (2) 15.2% 7,905

12.8% 26,671

13.3%

Good (3) 32.8% 17,209

31.4% 60,587

31.6%

Very Good (4) 31.6% 16,728

32.0% 63,423

32.0%

Excellent (5) 15.4% 7,564

19.1% 32,298

18.3%

legend *** p < .001

35

Table 2.5 Bivariate Relationship of Caregiver Relationship and Caregiving Length
n = 39,465

Caregiving Length
Caregiver
Relationship < 30 days
1 month to
< 6 months
6 months to
< 2 years
2 years to
< 5 years 5 years + Total

Mother 1,185 900 1,589 2,188 2,650 8,512

15.6% 18.2% 22.4% 26.8% 22.8% 21.6%
Father 571 395 687 734 724 3,111

7.5% 8.0% 9.7% 9.0% 6.2% 7.9%
Mother-in-law 272 213 338 376 351 1,550

3.6% 4.3% 4.8% 4.6% 3.0% 3.9%
Father-in-law 148 83 140 146 85 602

1.9% 1.7% 2.0% 1.8% 0.7% 1.5%
Child 457 229 317 438 2,197 3,638
6.0% 4.6% 4.5% 5.4% 18.9% 9.2%
Husband 453 522 775 983 1,497 4,230

5.9% 10.6% 10.9% 12.0% 12.9% 10.7%
Wife 427 341 508 677 1,078 3,031

5.6% 6.9% 7.2% 8.3% 9.3% 7.7%
Same-sex partner 20 24 18 18 50 130

0.3% 0.5% 0.3% 0.2% 0.4% 0.3%
Brother/BIL 335 194 250 226 415 1,420

4.4% 3.9% 3.5% 2.8% 3.6% 3.6%
Sister/SIL 566 290 328 360 448 1,992

7.4% 5.9% 4.6% 4.4% 3.9% 5.1%
Grandmother 284 212 237 265 273 1,271

3.7% 4.3% 3.3% 3.2% 2.4% 3.2%
Grandfather 112 64 80 84 82 422

1.5% 1.3% 1.1% 1.0% 0.7% 1.1%
Grandchild 51 29 48 61 161 350

0.7% 0.6% 0.7% 0.8% 1.4% 0.9%
Other relative 778 411 466 468 601 2,724

10.2% 8.3% 6.6% 5.7% 5.2% 6.9%
Non-relative/Friend 1,963 1,042 1,308 1,151 1,018 6,482

25.8% 21.1% 18.5% 14.1% 8.8% 16.4%

Total 7,622 4,949 7,089 8,175 11,630 39,465

100% 100% 100% 100% 100% 100%

36

Chapter 3: Caregiver Mental Health Outcomes: Are There Differences
Across Generational Cohorts? BRFSS 2015-17

Introduction
There are over 40 million informal caregivers in the United States (NAC & AARP,
2015). Informal caregivers are defined as people who provide unpaid, continuous help to persons
who are unable to manage their lives independently. This is most often done to assist a loved one
suffering from a chronic illness or disability with Activities of Daily Living (ADLs) or
Instrumental Activities of Daily Living (IADLs).
ADLs are considered to be routine tasks of everyday self-care that are basic or essential,
such as eating, bathing and using the toilet, getting dressed, and getting into and out beds and
chairs. IADLs, on the other hand, refers to the more complex tasks of everyday life along with
ADLs that are necessary for a person to live an independent life and draw upon more highly
developed capacities in cognition, communication, physical dexterity, and stamina, and include
tasks such as cooking and preparing meals, managing medications, paying bills, driving a car,
doing laundry, and shopping for groceries (Almgren, 2018).
Informal caregivers are not to be confused with home health aides, who are paid for their
services and considered formal caregivers (Roth, Fredman, & Haley, 2015). Currently,
approximately 80% of the care given to older adults outside of long-term skilled nursing
facilities is provided by informal caregivers (NAC & AARP, 2015). In 2009, over 40 million
people provided unpaid care to an older adult with an estimated economic value of $450 billion
(Feinberg, Reinhard, Houser, & Choula, 2011), which grew to an estimated economic value of
$470 billion by 2013 (Reinhard, et al. 2015).

37

Due to the rapid growth of the aging population of baby boomers and to increased
longevity through medical advancements, it is projected that by 2030 one in five, or 88.5 million,
people in the United States will be above the age of 65. In 2010, the corresponding number was
40.2 million (Vincent & Velkoff, 2010). This growing group of aging people has direct
implications on informal caregiving as roughly 90% older adults would rather age in place than
in formalized institutions (Farber, Shinkle, Lynott, Fox-Grage, & Harrell, 2011), and current
projections show that people with longer lifespans will require additional needs for long term
care support compared to previous decades. For example, between 1998 and 2006, life
expectancy for men at age 65 increased by one year, while the length of time unable to function
increased by 1.5 years, from 2.9 years to 4.5 years; for women at age 65 during this same time
period half a year of life expectancy was gained as was an additional 1.5 years of time unable to
function from 5.8 to 7.3 years (Crimmins & Beltrán-Sánchez, 2010). These additional years of
disease and inability to function will increase demand for informal caregivers who can assist
with ADL and IADL tasks.

Mental Health Implications Associated with Caregiving
It has been well documented in the literature since the 1980s that the high demands of
informal caregiving can cause caregivers to experience social, mental, and physical stress
(Cantor, 1983). This concept has been characterized as caregiver burden and defined as “the
extent to which caregivers perceive that caregiving has had an adverse effect on their emotional,
social, financial, physical, and spiritual functioning” (Zarit, Todd, & Zarit, 1986). The present
study focuses on the sociodemographics of the caregivers’ background and context and resources

38

to understand how these factors impact the outcome of mental health as described in the Stress
Process Model (Pearlin et al., 1990). These factors are highlighted in Figure 3.3.
Caregivers, when compared to non-caregivers, suffered across five key indicators of
health: depression, stress, subjective well-being, self-efficacy, and physical health (Pinquart &
Sörensen, 2003). For this study, the caregiver participants had a mean age of 62.5 years. Later, a
meta-analysis revealed that when compared to non-caregiving controls, older adult spousal
caregivers (aged 50 and over) experienced more cognitive functional difficulties, strain, distress,
stress, loneliness, depression, anxiety, and poorer mental health (Lavela & Ather, 2010).
Higher strained caregivers have been found to have more emotional distress, worse
physical functioning, and fewer social relationships than non-caregivers (Roth et al., 2009) and
the challenging burden of caregiving can lead to increased depression, anxiety, loneliness, and
social isolation (Kim & Schulz, 2008; El Masry Mullan, & Hackett, 2013; Musich, Wang,
Kraemer, Hawkins, & Wicker, 2016; Vasileiou et al., 2017). Special circumstances also have an
impact; for example, depression is found to be more prevalent in spousal caregivers of
Alzheimer’s disease compared to non-caregiving counterparts (Beeson, 2003).

Shifting Demographic Trends
As the baby boomer generation ages, in combination with overall longevity increases,
more caregivers will be needed. However, it is predicted that there will be fewer spouses and
adult children available to provide such care due to the fact that women are having fewer
children and delaying childbearing, higher divorce rates, lower marriage rates, and from other
social and economic trends that affect the supply of family members and friends available to
provide informal care (Roth et al., 2015). The result of this widening gap in between recipients

39

who supply care and those who will need it will most likely lead to greater levels of demand on
the available caregivers, such as transferring care or financial responsibilities to other, younger
caregivers, and/or a greater reliance on paid help (Feinberg & Spillman, 2019).
The average age of a caregiver of an adult in the United States is 49.2 years (NAC &
AARP, 2015). Although numerous studies have investigated the psychological, mental, and
physical consequences experienced by older caregivers, generally those 50 and older, few
include Millennials and none have focused on the psychological or mental impact of caregiving
specifically for Millennials.

Millennial Caregivers
According to the Pew Research Center, any person born between the years of 1981 and
1996 is considered to be a part of the Millennial generation, while those considered part of
Generation X were born between 1965 to 1980 (Dimock, 2019). In 2019, any person considered
a Millennial would thus have been between the ages of 23 to 38. Of the over 40 million informal
caregivers in the United States, approximately 24% is part of the Millennial generation (NAC &
AARP, 2015), and this number is predicted to increase as the population continues to age
(Accius & Yeh, 2016). Furthermore, over 50% of the Millennial caregivers are the sole/primary
caregiver to the care recipient and are alone in being responsible for their caregiving duties
(Flinn, 2018).
Millennial family caregivers are more racially and ethnically diverse than older
generations of family caregivers (NAC & AARP, 2015; Accius & Yeh, 2016; Flinn, 2018). For
example, while 67% of caregivers in older generations are white, only 44% of Millennial
caregivers are white. Over 50% are Hispanic/Latino (27%), African American/Black (18%), or

40

Asian American/Pacific Islander (8%). (NAC & AARP, 2015). This indicates that caregiving
tools and resources may need to be adapted to a more multicultural group than previously
considered. The majority of care recipients for Millennial caregivers are parent or parent-in-law
(43%), followed by a grandparent (22%) (NAC & AARP, 2015).
The typical Millennial caregiver is a 27-year old caring for a 60-year-old or older female
relative, most often a parent or grandparent. In some cases, these caregivers are also caring for
spouses, siblings, aunts, uncles, close family friends, families of choice, and their own children.
Most Millennial caregivers (75%) tend to live with, or are residing within twenty minutes of, the
person they care for (NAC & AARP, 2015).
Similar to older generations of caregivers, over 50% of Millennial caregivers perform
complex ADLs and IADLs, as well as medical/nursing tasks, for their care recipient; in contrast,
however, nearly 3 in 4 Millennial family caregivers are employed (NAC & AARP, 2015). The
Millennial generation is more likely than other generations of caregivers to be employed in a role
outside of the home in addition to their informal caregiving role (Flinn, 2018). One in three
Millennial caregivers earn less than $30,000 annually, so the recent trends that suggest that the
share of family caregivers who are also in the paid labor force will continue to increase
(Feinberg, 2018) will negatively impact the financial situation of Millennial caregivers.
Millennials who are both employed outside of the home and who are the primary
providers of caregiving spend approximately 35 hours a week at work (NAC & AARP, 2015).
Of these employed Millennial caregivers, 54% report that their caregiving responsibilities
affected their work in some way, such as by going to work late or having to leave early (39%)
and/or having to reduce work hours (14%). This difference in generational time allocation alone
could affect the most influential future programs and support functions aimed at alleviating

41

caregiver burden and should be considered during intervention planning. Moreover,
approximately two-thirds of working Millennials have not saved for their own retirement, which
can make both them and their families vulnerable in the later years of their lives (Khatutsky &
Greene, 2019).
One national poll found that one-third of Millennials expect to provide care for an aging
family member or friend within the next five years and feel unprepared to do so (Associated
Press–NORC Center, 2018). To add a layer to the lack of preparation, most families are not
aware that Medicare does not pay for long-term services and support, and that Medicaid only
covers the cost of healthcare when those eligible have exhausted their monetary resources.
Younger generations are even more vulnerable to inequitable investments in social
infrastructures and support systems (Accius & Yeh, 2016).
Compared to Generation X and the Baby Boomer generational cohorts, Millennials are
more educated (Denaro, Giorgi, Sderci & Fiz-Perez, 2018). More than one in three Millennial
caregivers have a college or higher degree (Flinn, 2018). Millennials also exhibit different
characteristics in the workplace that should be considered. For example, as one study reported,
Millennials have come of age exposed to a greater variety of technology than previous
generations, yet social media connectedness has led to wanting constant feedback and causing a
level of engagement within the workplace that is lower than older generations. Millennials seem
to be no longer driven by motivational factors such as professional growth or wages; the controls
that seem to be most meaningful are those that relate to the work-life balance, the ability to
handle the job, and the opportunity to have control and responsibility in the duties (Denaro et al.,
2018).

42

Although Millennials are more likely to have college educations, according to Pew
Research Center (2015), they also have higher levels of student loan debt, poverty,
unemployment, and lower levels of wealth and personal income than any other generation at the
same stage of life, and their education was more often than not financed through student loans.
This adds to the stressors that younger caregivers already experience in their daily lives.
Since 2013, Millennials have experienced a 47% increase in major-depression diagnoses
(BlueCross BlueShield, 2019). The higher incidence of overall depression combined with the
proportional increase in Millennial caregivers within the population indicates that they should be
a target to monitor for increased depressive symptoms. Appropriate interventions should be put
into place to alleviate stress and induce the Millennial’s general well-being. Although we know
that lifespan and the number of years with disease and functional disability are increasing, and
that more Millennials are taking on caregiving roles while also working, a noticeable gap still
exists in the current literature regarding the impact of caregiving on Millennials. We have also
not implemented effective programs and strategies to support Millennials who are providing care
to older persons.
As the proportion of Millennials will continue to increase in the overall caregiving
population, it is important to study the specific circumstances of diverse populations so as to best
prepare to support their needs as caregivers. Decisions about long term care planning usually
occur in the context of competing demands for limited family resources. This has become
particularly true in recent years for Millennials, who often are burdened with a combination of
conflicting family and financial demands and obligations—college and credit card debt,
mortgages, raising families and finding housing, unemployment, out-of-pocket healthcare
expenses—all of which take priority over establishing a long-term support plan. When

43

Millennials do become caregivers, it often comes as a surprise, and without much planning,
preparation, or training (Khatutsky & Greene, 2019).
Another urgent need for expanding caregiving research to focus on Millennials is that
many caregiving support programs and interventions are based on recommendations developed
based on data of the published literature investigating caregivers from previous generational
cohorts. For example, the 2015 Caregiving in the U.S. study purposely included an oversample
of older caregivers (NAC & AARP, 2015). If the Millennial generation experiences its role and
caregiving experience differently than the older generations, then we cannot with confidence say
that similar interventions will work for Millennials as for older adult caregivers. Given the
increasing numbers of Baby Boomers facing disability and multiple chronic conditions it is
imperative that policymakers address the problems in our current long-term care system,
including providing for training, education, and support for the Millennials who will have to care
for them.

Generation X, Baby Boomer, and Silent Generation Caregivers
According to the Pew Research Center, those considered part of Generation X were born
from 1965 to 1980. In 2019, people within this age group were between the ages of 39 and 54
(Dimock, 2019).
Although other surveys have included data about caregivers, BRFSS was selected
because it is a nationally representative sample of adults ages 18 and over. The Health and
Retirement Study (HRS) is longitudinal, but only includes respondents age 50 and over (and
their spouses), which would not include a nationally representative sample of Millennials. The
NAC AARP survey conducted online interviews with 1,248 caregivers ages 18 and older, and

44

includes anyone who provided care in the past 12 months and includes an oversample of older
caregivers by design (NAC & AARP, 2015).

Hypothesis
The purpose of this study is dual:
(1) To understand the demographic characteristics of family caregivers by generational
cohort (Millennial, Generation X, Baby Boomers, and Silent Generation).
(2) To investigate whether Millennial caregivers suffer poorer mental health outcomes
than their Generation X, Baby Boomer, and Silent Generation counterparts.

Given the combination of family and financial demands placed on those in the Millennial
generation, in addition to an increased incidence of depression, we hypothesize that Millennial
caregivers will experience more days with depressive symptoms than caregivers in the other
generational cohorts included in this study.
The study will use results from the Center of Disease Control’s Behavioral Risk Factor
Surveillance System (BRFSS) survey. Findings can be used to help develop recommendations
that can be applied to create support systems and programs for younger generations of
caregivers, as well as for future research that can expand the conclusions across a larger
population of Millennial caregivers.

45

Methods
Data and Sample
The study uses the Center of Disease Control’s Behavioral Risk Factor Surveillance
System (BRFSS) survey. The BRFSS is a system of health-related telephone surveys that collect
data about residents in all 50 states within the United States regarding participant health-related
risk behaviors, chronic health conditions, and use of preventive services. As a continuously
conducted cross-sectional survey, BRFSS interviews more than 400,000 adults annually.
The BRFSS Caregiver module is a 10-item optional module that was first introduced by
the CDC in 2005 to understand the characteristics of informal caregivers with a pilot test in
North Carolina (Cavanaugh, 2010). In 2007, three additional states, Hawaii, Kansas, and
Washington, utilized the module. In 2009, the module was made available as an optional module
for all states. Beginning in 2013, revisions were made to the module, with the revised module
taken into use in 2015 (Cavanaugh, 2010).
For the present study, data from 46 states that participated in the BRFSS caregiver
module in 2015, 2016, and 2017 were used. If a state participated more than once during the
study period, the most current year’s data were included in the analytic sample. Data were
appended in a stepwise fashion, adding state specific data first and then year-by-year data. Table
3.1 provides a complete listing of included states.
Only caregivers were included in the analytic sample. Caregiver status was determined
by the question: “During the past 30 days, did you provide regular care or assistance to a friend
or family member who has a health problem or disability?” The total sample size was 50,745.

46

Responses were weighted to the estimated population in the corresponding state or
territory (Anderson et al., 2013). Sample weights were applied for each survey type using
[pweight=combowt] (CDC, 2017).

Measures
Depression
The dependent variable was mental health status over the past 30 days. Respondents were
asked, “Now thinking about your mental health, which includes stress, depression, and problems
with emotions, for how many days during the past 30 days was your mental health not good?”
Responses ranged from 0 to 30, mean 4.6 days, SD 8.8. Percentiles 10%: 0; 25%: 0; 50%: 0;
75%: 4; 100%: 20.

Demographic Characteristics
Demographic characteristics include generational cohort, sex, and race/ethnicity. The
generational cohort was determined by subtracting the BRFSS imputed age from the survey year
(2015, 2016, or 2017) to calculate birthyear. Then generational cohorts were assigned according
to birth year, Generation Z (born 1997 – 2012); Millennial (1981 – 1996); Generation X (1965 –
1980); Baby Boomer (1946 – 1964); and Silent Generation (1928 – 1945). Race/ethnicity was
categorized as White, non-Hispanic; Black, non-Hispanic; “other” race, non-Hispanic;
multiracial, non-Hispanic or Hispanic.

47

Socioeconomic Status
Socioeconomic status (SES) characteristics included education and employment status.
Education was categorized by less than high school; high school graduate; some college; or
college/technical school graduate and beyond. Employment status was categorized as employed,
out of work, homemaker, student, retired, and unable to work.

Social Characteristics
We included the number of children living in the household. Children living in the home
was coded as a dichotomous variable (0 = no children living at home; 1 = one or more children
living at home).

Analysis
We appended data from 2015, 2016, and 2017 BRFSS survey years. The analysis was
done using STATA/MP 15.1. We conducted Negative Binomial Regression. OLS Regression
was ruled out because the dependent variable violated the assumptions of linear regression;
specifically, mental health days were not normally distributed, linearity was not met, and data
failed the Breusch-Pagan / Cook-Weisberg test for homoscedasticity. Because of the nature of
the dependent variable as count data with skewed distribution and overdispersion disqualifies
linear regression as an appropriate analytical method and would lead to loss of information (Xu,
Zhu, & Han, 2017). When overdispersion is present, a Negative Binomial Distribution can be
applied to take into account the overdispersion.

48

Results
Table 3.2 shows the demographic characteristics of caregivers by the generational cohort.
Regarding gender, 58.4% of Millennial caregivers are female, while females comprise 64.9%;
65.2%; and 64.2%, respectively for Gen X, Baby Boomers, and Silent Generation caregivers (χ2
= 98.57, p<0.001.).
In the sample, 62.6% of Millennial caregivers are White, non-Hispanic, compared with
70.6%, 80.7%, and 87.7% in Gen X, Baby Boomer, and the Silent Generations, respectively (χ2
= 1900.0, p<0.001.) Black, non-Hispanic caregivers comprise 13.4%; 12.4%; 9.1%; and 5.5% of
the Millennial, Gen X, Baby Boomer, and Silent Generations, respectively (χ2 = 1900.0,
p<0.001.) Among Millennial caregivers, 13.3% are Hispanic, compared with 8.7%; 4.6%; and
2.9% in Gen X, Baby Boomers, and Silent Generation, respectively (χ2 = 1900.0, p<0.001.).
Weighted population estimates for educational attainment and work status by
generational cohort among caregivers is also present in Table 3.2.
For children living in the household, 56.6% of Millennial caregivers and 58.5% of
Generation X caregivers have one or more children living with them compared with 11.9% for
Baby Boomers and 2.9% in the Silent Generation (χ2 = 14000.0, p<0.001.)
Table 3.3 shows the results of NBR Incidence Rate Ratios from Models of Expected
Poorer Mental Health Outcomes by Generational Cohort Among Family Caregivers, using a
model-building approach.
All three models in Table 3.3 included data for generational cohort, gender,
race/ethnicity, and educational attainment. Models 2 and 3 added data for employment status,
and model 3 additionally adds data for children living in the home. In Model 1 compared to
Silent Generation caregivers, Millennial caregivers are expected to have an incidence rate ratio

49

of 2.6 times more poor mental health days (p<0.001); Generation X caregivers are expected to
have a rate of 2.3 times more poor mental health days (p<0.001); and Baby Boomer caregivers
are expected to have a rate of 1.8 times more poor mental health days (p<0.001) (χ
2
= 0.000,
Pseudo R
2
= 0.0062, AIC = 3326.7).
For model 2, compared to Silent Generation caregivers, Millennial caregivers are
expected to have a rate of 2.4 times more poor mental health days (p<0.001); Generation X
caregivers are expected to have a rate of 1.9 times more poor mental health days (p<0.001); and
Baby Boomer caregivers are expected to have a rate of 1.5 times more poor mental health days
holding all other variables constant (p<0.001) (χ
2
= 0.000, Pseudo R
2
= 0.0104, AIC = 3312.5).
In Model 3, which adds in children living in the household, compared to Silent
Generation caregivers, Millennial caregivers are expected to have a rate of 2.4 times more poor
mental health days (p<0.001); Generation X caregivers are expected to have a rate of 2.0 times
more poor mental health days (p<0.001); and Baby Boomer caregivers are expected to have a
rate of 1.5 times more poor mental health days (p<0.001) (χ
2
= 0.000, Pseudo R
2
= 0.0105, AIC
= 3312.5). Female caregivers have an incidence rate ratio of 1.5 times greater poor mental health
days compared to male caregivers, while holding the other variables constant in the model
(p<0.001). Compared to caregivers with less than a high school education, caregivers who
attended high school are expected to have a rate of 0.8 times fewer poor mental health days
(p<0.001); caregivers who attended some college are expected to have a rate of 0.8 times fewer
poor mental health days (p<0.01); and caregivers who graduated college or beyond are expected
to have a rate of 0.6 times fewer poor mental health days (p<0.001). Compared with employed
caregivers, caregivers who are not currently employed are expected to have a rate of 1.9 times
greater poor mental health days (p<0.001) and caregivers who are not able to work have an

50

expected incidence rate ratio of 2.7 times greater poor mental health days (p<0.001).
Race/ethnicity differences were not statistically significant.
Model 3 was selected as the best fit because it had a similar AIC as Model 2, with the
added information provided by children living in the household. The presence of more children
was not statistically significant.

Discussion
Millennials account for 24% of family caregivers (NAC & AARP, 2015). Understanding
the experience of different generational cohorts can provide insight into the policies and support
systems that are needed now and in the future. This study found that Millennial caregivers have
an incidence rate ratio of 2.4 times more self-reported days of “stress, depression, and/or
problems with emotions” compared to Silent Generation caregivers (p<0.001). Compared with
Silent Generation caregivers, Generation X caregivers report and incidence rate ratio of 2.0 times
more days of stress and depression (p<0.001); and Baby Boomer caregivers report 1.5 times
more days of stress and depression (p<0.001).
Previous studies investigating the well-being among family caregivers have focused
attention on caregivers in their 60s and above and the current study sheds light on the unique
needs of caregivers in the Millennial and Generation X generational cohorts. Based on the results
of this study, younger generations of caregivers are more likely to experience poor mental health
days than caregivers affiliated with older generational cohorts. Such differences among
generational cohorts may imply that certain groups of caregivers have increased needs for mental
health and social support compared with older generations of caregivers.

51

Millennial and Generation X caregivers are in a life stage unique from those in the Baby
Boomer and Silent Generation cohorts. Millennial and Generation X caregivers are more likely
to have the added demand of outside employment. In our sample, 68.5% of Millennial caregivers
are employed and 72.0% of Generation X caregivers are employed. Of Baby Boomer caregivers,
48.8% are employed and of Silent Generation caregivers only 10.6% are employed. At the same
time, Millennials and Generation X caregivers are also more likely to be raising children; 56.6%
of Millennial caregivers have children living in the household and 58.5% of Generation X
caregivers have children at home, and this is in contrast to Baby Boomer caregivers of whom
only 11.9% have children living at home and Silent Generation caregivers of whom only 2.8%
also have children living at home with them.
The balance of caregiving along with work and/or raising children prompts us to think
carefully about the future of services and support programs for caregivers that would fit into such
schedules. For example, technology could be employed to offer brief asynchronous training
videos or video teleconferencing could allow for caregivers to participate in virtual support
groups, among other possibilities, all that warrant further exploration.
Many studies focus on negative, and ignore positive, caregiving experiences in different
generational cohorts, or in general. More studies specific to Millennials are needed in order to
better understand both the negative and positive impacts of caregiving. Future studies should
consider the intensity of caregiving in terms of hours per week, the duration of care provided,
and the type of care provided (e.g., ADL or IADL support). In addition to exploring the impact
of caregiving on depressive symptoms future research should also follow up with Millennial and
Generation X caregivers to explore opportunities to develop feelings of greater meaning and
purpose and changes in self-appraised quality of life as a result of caregiving.

52

Limitations
The interpretation of the results from this study should be considered in perspective with
the following limitations. Our study aimed at achieving a thorough and detailed cross-sectional
analysis of the mental health risk factors associated with caregiving across generational cohorts.
The cross-sectional nature of the data collected does not allow for the establishment of causal
relations between the outcome and the variables investigated. Cross-sectional studies, similar to
this one, cannot be used to analyze behavior over a period to time. Rather, the data illustrate a
snapshot in time. Longitudinal data would allow us to identify cause and effect relationships
between the variables. Also, the timing of the snapshot is not guaranteed to be representative as
the study was taken by respondents at different points of time across the duration of three years.
A methodical challenge of the study was the decision on how to investigate the effect of
the age of caregiver on caregiver mental health. The options were to either group age of
respondents into categories (i.e., 18-25, 26-35, etc.) or into pre-established cohorts by
generations (i.e., Millennial, Baby Boomer, etc.). Age denotes a person’s place in the life cycle
and cohort of individuals who were born at similar times. We chose to compare generations of
caregivers, a decision based on the policy applications of results found. However, there is no
clear consensus on whether to look at age in groups or generational cohorts or how to divide up
the age buckets. We chose what we determined to be the most applicable method to compare the
relative ages of caregivers.
Cohorts are “the aggregate of individuals (within some population definition) who
experienced the same event within the same time interval” (Ryder, 1965). According to the Pew
Research Center, generational cohorts are specific groupings of cohorts based on time-specific
factors such as historical events, economic circumstances, and overall demographic trends (Pew

53

Research Center, 2015). Further, “age denotes two important characteristics about an individual:
their place in the life cycle – whether a young adult, middle-aged parent or retiree – and their
membership in a cohort of individuals who were born at a similar time” (Pew Research Center,
2015). The present study used age and generational cohorts and cross-sectional data to group
individuals and draw conclusions about caregiver experiences. In order to understand change
over time within a generational cohort, such as within the Millennial generation, longitudinal
studies will be needed.
Future analysis should also include the length and intensity of caregiving to look for other
ways to target services to those who most need them. And future cohort studies should take into
account the paradigm changing impact of coronavirus and COVID-19 in relation to caregiving,
stress, and life stage. While data and experiences are still emerging, the virus’ impact on health,
caregiving, and the economy appears poised to become a generation defining event, much like
the Great Depression of the 1930s or the Great Recession of the late 2000s and early 2010s.

Conclusion
The increasing aging population will over the coming decades call for a parallel growth
in numbers and responsibilities of informal caregivers to assist those diagnosed with chronic
conditions and requiring long-term care. As more of these informal caregivers will come from
the Millennial generation, it is important to better understand this population and how they may
be affected by their caregiving role, both in ways similar to and apart from older generations of
caregivers.
Individuals in both the Millennial and Generation X cohorts are in their prime working
years, many of whom are also raising families while building their own career. As they are called

54

upon to provide care for ailing family members, their own ability to advance in certain career
trajectories and to save for their future retirement may be impacted. Comprehensive support
systems that create a safety-net of Long-term Services and Supports would help assist these
younger caregivers in balancing the variety of roles they might find themselves in during the
coming years.
Additional empirical and longitudinal studies investigating the current experiences of
Millennial caregivers will add to the knowledge base and allow researchers to identify the needs
to be met to best support this population. Results from such studies can be used to influence
policy recommendations on the most effective support interventions for Millennial caregivers
that then can be created and implemented in the field.
With more Millennials with different needs from previous generations taking on the role
of caregiver, healthcare service providers and policymakers need to consider these unique needs
when crafting interventions to support Millennial caregivers. If these interventions do not get the
support they need, then becoming a caregiver will cause Millennials to risk sacrificing their
careers and lessen their own future economic security.
Support can come from both the public and private sectors. In the private sector,
workplaces that offer paid family leave, flexible hours, and respite care can alleviate the burden
felt by younger caregivers who are working and/or going to school while simultaneously
providing care to a loved one. Greater investments in technological solutions to address the
challenges of caregiving can also help improve the quality of life for all caregivers, and these
should take younger generation characteristics into account. Recognizing the emerging and
unique needs of Millennial caregivers will help ensure the health and security of the older person
for which they provide care and their own well-being.

55

Figure 3.1 Stress Process Model for Caregiver Stress (source: Pearlin et al., 1990).

Caregiving Background
& Context:
- Sociodemographics
- History of Care
Primary
Stressors
Secondary
Stressors:
Role Strains
Secondary
Stressors:
Intrapsychic Strains
Outcomes
Objective
Stressors:
- Cognitive
Status
- ADLs
- Behavior
Problems
Subjective
Stressors:
- Overload
- Loss of
Relationship
- Stress
Appraisals
- Family
Conflict
- Job-care
Conflict
- Economic
Problems
- Mastery
- Self-Esteem
- Loss of Self
-Competence
Gain
- Well-being
- Health
- Yielding of
Role
Resources:
- Coping
- Social Support

56

Table 3.1 Included States by Year

State Year
Alabama 2015
Alaska 2017
Arizona 2016
Arkansas 2016
California 2016
Colorado 2016
Connecticut 2016
District of Columbia 2016
Florida 2015
Georgia 2016
Hawaii 2017
Idaho 2015
Illinois 2015
Indiana 2015
Iowa 2015
Kansas 2017
Kentucky 2015
Louisiana 2015
Maine 2015
Maryland 2017
Michigan 2017
Minnesota 2016
Mississippi 2015
Missouri 2016
Montana 2016
Nebraska 2015
Nevada 2016
New Jersey 2017
New Mexico 2017
New York 2017
North Dakota 2016
Ohio 2016
Oklahoma 2017
Oregon 2017
Pennsylvania 2015
Puerto Rico 2016
Rhode Island 2017
South Carolina 2015
South Dakota 2016
Tennessee 2016
Texas 2016
Utah 2017
Virginia 2015
West Virginia 2015
Wisconsin 2015
Wyoming 2015

57

Table 3.2 Demographic Characteristics of Caregivers by Generational Cohort, 2015-2017 BRFSS (N = 50,745)

Millennial

Gen X

Baby Boomer

Silent Generation χ
2

Weighted
%
Unweighted
count

Weighted
%
Unweighted
count

Weighted
%
Unweighted
count

Weighted
%
Unweighted
count

Category

Gender

Male 41.6% 2,437

35.1% 3,826

34.8% 8,680

35.7% 3,222 98.6 ***
Female 58.4% 3,426

64.9% 7,078

65.2% 16,278

64.3% 5,798

Race/Ethnicity

White non-Hispanic 62.6% 3,672

70.6% 7698

80.7% 20,138

87.7% 7,909 1900.0 ***
Black non-Hispanic 13.4% 786

12.4% 1357

9.1% 2,277

5.5% 494

Other non-Hispanic 6.9% 404

5.4% 588

3.3% 830

2.6% 232

Multiracial 3.7% 217

2.9% 316

2.2% 554

1.4% 125

Hispanic 13.4% 784

8.7% 945

4.6% 1,159

2.9% 260

Education

Less than High School 6.3% 367

6.2% 672

4.9% 1,216

7.7% 695 407.3 ***
High School 28.5% 1,669

24.9% 2714

26.3% 6,560

30.6% 2,758

Attended Some College 37.1% 2,173

30.9% 3368

31.2% 7,775

28.0% 2,523

College Graduate + 28.2% 1,654

38.1% 4150

37.7% 9,407

33.8% 3,044

Work Status

Employed 68.5% 4,016

72.0% 7855

48.8% 12,185

10.6% 958 21000.0 ***
not employed 10.0% 585

7.4% 810

4.5% 1,113

0.6% 57

homemaker 7.6% 447

8.7% 949

5.2% 1,298

7.0% 627

student 9.9% 579

1.3% 137

0.2% 47

0.1% 13

retired 0.2% 9

1.2% 129

30.9% 7,708

79.4% 7,162

unable to work 3.9% 227

9.4% 1024

10.5% 2,607

2.3% 203

Children living in the household

No children 43.4% 2,545

41.5% 4530

88.1% 21,993

97.2% 8,763 14000.0 ***
1 or more children 56.6% 3,318 58.5% 6374 11.9% 2,965 2.8% 257
legend: *** p<0.001

58

Table 3.3 NBR Incidence Rate Ratios from Models of Expected Poorer Mental Health
Outcomes by Generational Cohort Among Family Caregivers
BRFSS 2015-2017
(N = 50,745)

model 1 model 2 model 3
Mental Health (reference = Silent Generation)

Millennial 2.6 *** 2.4 *** 2.4 ***
Generation X 2.3 *** 1.9 *** 2.0 ***
Baby Boomer 1.8 *** 1.5 *** 1.5 ***

Sex (reference = Male)

Female 1.5 *** 1.5 *** 1.5 ***

Race/Ethnicity (reference = White, non-Hispanic)

Black non-Hispanic 0.7

0.9

0.9
Other non-Hispanic 0.9

0.9

0.9
Multiracial 1.2

1.1

1.1
Hispanic 0.9

1.0

1.0

Education (reference = Less than High School)

High School 0.7 *** 0.8 *** 0.8 ***
Attended Some College 0.6 *** 0.8 ** 0.8 **
College Graduate + 0.4 *** 0.6 *** 0.6 ***

Work Status (reference = Employed)

not employed

1.9 *** 1.9 ***
homemaker

1.1

1.1
student

0.8

0.8
retired

1.0

1.0
unable to work

2.7 *** 2.7 ***

Children Living in the Household (reference = no kids)

1 or more kids at home

0.95

Constant 3.3 *** 2.6 *** 2.6 ***
/lnalpha 5.4 *** 5.3 *** 5.3 ***

N 50745

50745

50745

legend: ** p<0.01; *** p<0.001

59

Chapter 4: Supporting Family Caregivers: How Do Caregivers of Older
Adults Cope with Strain in Their Role?

Introduction
An estimated 17.7 million Americans provide care to an older adult with a chronic illness
or disability (Schulz et al., 2016). Family caregiving is often characterized as a stressful life
event given its time and resource demands, inadequate training and support for families, and the
occurrence of behavioral symptoms that accompany Alzheimer’s Disease and Related Dementias
(ADRD) (Au et al., 2009; Burgdorf, Roth, Riffin, & Wolff, 2019; Fauth, Zarit, Femia, Hofer, &
Stephens, 2006; Lee et al., 2015). According to the Stress Process Model, these stressors
accumulate and interact over time and contribute to negative health outcomes observed among
caregivers (e.g., increased risk of cardiovascular disease, depression) (Capistrant, Moon,
Berkman, & Glymour, 2012; Pearlin et al., 1990; Riffin, Van Ness, Wolff, & Fried, 2017; Shaw
et al., 1999). In response, researchers have developed hundreds of behavioral interventions to
help caregivers cope with stress and acquire the skills they need to provide care ( Gitlin &
Hodgson, 2015; Gitlin, Marx, Stanley, & Hodgson, 2015). Caregivers’ relationship with care
recipients’ are also implicated as potential sources of stress within in the Stress Process Model,
though it remains an understudied component (Zarit & Edwards, 2008). Little is known about
how caregivers cope with challenging caregiving relationships, even though low-quality
caregiver-care recipient relationships are associated with poorer subjective health for caregivers
and recipients (Rippon et al., 2019). To understand how caregivers cope with strained caregiving
relationships with care recipients, we conducted in-depth qualitative focus groups and interviews
with caregivers. We describe findings within the context of previous research on ADRD
caregiving, as nearly three-quarters of the study sample cared for a person living with ADRD. By

60

understanding how caregivers cope with relationship strain, we can begin to identify coping
strategies that caregivers are already using to integrate within interventions to support healthy
caregiving relationships.

Strained Caregiving Relationships as a Source of Stress and Health Consequences
Relationship strain, as we use it, is characterized by perceived tension or conflict in a
close social relationship, such as feeling the other person is overly critical, demanding, or
controlling (Rook, 2015; Schuster, Kessler, & Aseltine, 1990; Thoits, 2011; Walen & Lachman,
2000). Relationship strain includes both persistent and situational strain. Caregivers report
conflict with care recipients even when they positively appraise their overall relationship
(Solomon, Hansen, & Baggs, 2018). We focus on persistent strain rather than a one-time
argument, as this may exert differential health effects (Kiecolt-Glaser et al., 2005). Strained
relationships between caregivers and recipients can begin prior to caregiving, and may be
exacerbated given increased contact between dyad members subsequent to onset of recipient care
needs (Pickering, Mentes, Moon, Pieters, & Phillips, 2015).
Caregiving introduces novel stressors to existing partnerships that may increase the
likelihood of relationship strain. For example, caregivers who assist someone who experiences
behavioral symptoms of ADRD will sometimes perceive behaviors as contrived actions by the
care recipient, rather than symptoms of a disease (Roberto, McCann, & Blieszner, 2011). Internal
attribution of care recipient behavioral symptoms is associated with caregiver resentment
towards the recipient (Williamson et al., 2005). Care recipients may also find receiving care
disagreeable; this resonates with growing awareness in the field that care and support are not
always beneficial or welcomed by those who receive it (Carr, Cornman, & Freedman, 2017;

61

Thoits, 2011). Caregivers also describe tense social interactions following perceived resistance to
care by recipients, who may not welcome care when it is offered (Blieszner, Roberto, Wilcox,
Barham, & Winston, 2007; Cheng, Mak, Lau, Ng, & Lam et al., 2016). Another means by which
caregiving might generate more strained relationships is by affecting caregivers’ mental health.
Caregivers report higher levels of depressive symptomology than non-caregivers (Riffin et al.,
2017). Some depressive symptoms may contribute to strained relationships (e.g., increased
anger). Still, empirical models show stronger support for relationship strain affecting depression
than vice versa (Umberson, Williams, Powers, Liu, & Needham, 2006).
Understanding the experience of strain within caregiving relationships has important
implications for caregiver and care recipient health. Relationship strain is associated with lower
subjective well-being and quality of life, even more so than positive support (Newsom, Rook,
Nishishiba, Sorkin, & Mahan, 2005; Uchino, Bowen, Kent de Grey, Mikel, & Fisher, 2018).
Strained interpersonal relationships are also implicated in contributing to poorer objective health,
such as high blood pressure, a result found both among both ADRD caregiving and non-
caregiving couples who report relationship strain (Birditt, Newton, Cranford, & Ryan, 2016;
Kiecolt-Glaser et al., 2005). Depression is perhaps one of the most studied health consequences
of relationship strain, such that those who report greater relationship strain are more likely to
experience depression (Umberson et al., 2006). This is particularly concerning since caregiver
depression predicts greater likelihood of ADRD care recipient mortality (Lwi, Ford, Casey,
Miller, & Levenson, 2017). Interpersonal relationships are also implicated in models of elder
mistreatment as it occurs within a caregiving relationship (Mosqueda et al., 2016). Caregivers
who report higher resentment towards care recipient, for example, are also more likely to endorse
potentially harmful behaviors (Williamson & Shaffer, 2001). Given the adverse health

62

consequences associated with strained caregiving relationships for both care partners and few
evidence-based interventions focused on caregiving relationships, learning how caregivers cope
with relationship strain can inform promising intervention components.

Coping Strategies to Manage Caregiving Stressors
“Coping” describes dynamic efforts undertaken by individuals to manage internal and
external demands that are perceived as either being deleterious or in excess of one’s available
resources (Lazarus & Folkman, 1984). How a person copes when faced with stressors is
considered a mediating factor affecting how that stressor impacts health. Within the Stress
Process Model, how an individual copes with stress may explain, at least in part, why some
caregivers do not experience declining health in this role (Leggett, Sonnega, & Lohman, 2019;
Pearlin, 1989; Pearlin et al., 1990). The Stress Process Model is outlined in Figure 4.1.
Most descriptions of coping recognize two major categories proposed by Lazarus and
Folkman (1984): problem- and emotion-focused coping, although additional (e.g., avoidant) and
subsidiary (e.g., humor) styles have since been added by some researchers (Carver, 1997; Endler
& Parker, 1990; Lazarus & Folkman, 1984). Problem-focused coping is characterized by action-
oriented behaviors done to alter the impact of stressors, such as a caregiver choosing to set up
advanced directives to mitigate worries about how to respond when a care recipient with ADRD
can no longer make medical and financial decisions. In contrast, emotion-focused coping
consists of efforts to lower emotional burden from stressors, such as lowering one’s expectations
and distracting oneself. For example, in the Powerful Tools for Caregivers intervention,
caregivers learn strategies for emotional regulation, such as using relaxation techniques when
faced with care stressors (Boise, Congleton, & Shannon, 2005). Although neither coping type is

63

considered “better” than the other, one coping style may be more constructive in some situations
than others. For example, avoiding the task of setting up advance directives when caring for
someone with ADRD can result in a still-more stressful situation if directives are not in place
when the care recipient loses decision-making capacity. Yet, putting off this task when one feels
overwhelmed in order to engage in a pleasant activity may be dampen a distress response. Still,
most studies among caregivers to date indicate caregivers who use problem-focused strategies
report better subjective and objective health relative to those prone to using more emotion-
focused coping (Hawken, Turner-Cobb, & Barnett, 2018).

Coping with Tension in Care Relationships
Caregivers describe multiple ways to cope with relationship stressors. Characterizing
emotion-focused coping techniques, several qualitative studies report ADRD caregivers learn to
take care recipient behavioral symptoms less personally over time (Cheng et al., 2016; Roberto et
al., 2011). In other cases, emotion-focused coping is characterized by avoidance and distancing,
such as treating the care recipient like a different person, particularly when they are living with
ADRD (Chesla, Martinson, & Muwaswes, 1994; Neufeld & Harrison, 1995). Such tactics were
not exclusive to ADRD caregiving; adult daughters who reported previously being abused by
their mothers also report avoiding contact with their mothers even when they need care
(Pickering et al., 2015). Problem-focused coping in response to relationship strain includes
learning strategies to better manage behavioral symptoms, such as through participating in
existing caregiver intervention programs, if available (Brodaty & Arasaratnam, 2012; Gitlin,
Winter, Dennis, Hodgson, & Hauck, 2010). Not all problem-focused coping approaches,
however, are so positive: some studies report caregivers taking a controlling and aggressive

64

approach to “problem solve” in response to relationship strain, such as punishing the care
recipient by withholding food when they refused to eat, contrary to the caregiver’s wishes
(Roberto et al., 2011).
Current research showing how caregivers cope with relationship strain often employs
qualitative methods that allow researchers an in-depth understanding of care relationship
dynamics. However, many studies draw on convenience sampling comprised of non-Hispanic
Whites, such that diverse caregiving experiences among other racial and ethnic groups are not
well understood. The updated Sociocultural Stress Process Model strongly implicates the
relevance of different coping styles— rather than appraisal of caregiving—to understand how
care stressors differentially affect outcomes among caregivers from different races and
ethnicities (Knight & Sayegh, 2010). For example, among African American caregivers,
religious coping more strongly mediates the positive relationship between burden and depression
than found among White caregivers (Heo & Koeske, 2013). Still other research has found no
differences in how African American and White caregivers cope with care stressors (McCallum,
Longmire, & Knight, 2007). Although qualitative research is not meant to be generalizable and
thus population representative samples are superfluous, failure to purposefully include caregivers
from different racial and ethnic backgrounds conceals differences in coping styles. Culturally
homogenous samples are a recognized weakness in research on caregiving relationships
(Blieszner et al., 2007).

The Current Study
To learn how caregivers cope with relationship strain with care recipients, we analyzed
focus groups (N=9) of family caregivers in the Los Angeles region. Data were originally

65

collected to understand how relationship strain might contribute to risks of low-quality care and
risk of elder mistreatment; however, we found few instances of this. Instead, focus group
discussion led to rich, in-depth conversations about how caregivers thought about their
relationships and changes that occurred since beginning caregiving. These findings are described
in a forthcoming manuscript [in progress; Avent et al., 2020].
Caregivers also discussed how they coped with relationship strain in ways that protected
their own sense of well-being. Specifically, the current study utilized conventional content
analysis (Padgett 2017) to describe the strategies that caregivers use to cope with tension and
strain in the context of the caregiving relationship. The present study focused on examining
approaches to coping with caregiving relationship strain looks different by culture, where we use
race and ethnicity as proxies of culture (Aranda & Knight, 1997). This research has high
translational potential: by hearing from caregivers, in their own words, about how they approach
relationship strain, we can identify and later test strategies to support healthy and rewarding
caregiving relationships. By asking caregivers their perspectives on how they cope with
relationship strain, the coping strategies we identify may be more likely to be used by caregivers
once implemented in future intervention programs (i.e., greater acceptability) (Sidani & Braden,
2011).

Methods
Data Collection
Black, White, Latino, and Asian (Filipino and Chinese) caregivers were recruited from
caregiver local support groups and community service organizations in Los Angeles, California.

66

To be eligible, individuals had to have been in the caregiving role for at least 6 months.
Participants received a $25 Visa gift card for their participation.
Two methods of collecting qualitative data were utilized: 1) focus groups, 2) and
individual one-on-one telephone interviews. Focus groups were selected over other qualitative
approaches because the method efficiently captures the perspectives of multiple participants.
Further, group dynamics (e.g., agreement and disagreement) can uncover nuance in complex,
multidimensional social phenomenon, such as the highly interpersonal and inter-relational act of
caregiving (Farnsworth & Boon, 2010). On the other hand, data collected during one-on-one
interviews may be less vulnerable to social desirability biases relative to focus groups. Further,
telephone interviews were collected from individuals who were not able to attend focus groups
sessions due to transportation barriers and/or time constraints. This enabled us to include the
voices of caregivers who may otherwise have been excluded from focus group participation.
A semi-structured interview guide about the nature of the caregiving relationship and
responses to strain was developed in consultation with academic experts in caregiving and with
two caregivers. We asked caregivers about their experience of strain and tension in the
caregiving relationship and their specific response to such tension using open-ended questions.
Questions asked participants “How would you describe your relationship with the person you
assist?” and “How do you respond when you feel things are getting tense?” The full set of
interview questions are shown in Table 4.1. The guide was translated into Spanish and Mandarin
by native speakers to collect data from unilingual focus groups.
Focus groups began with an informed consent process. Information sheets were mailed to
telephone interview participants prior to the interview. The study protocol was approved by the
USC Institutional Review Board. Focus group participants included 67 caregivers from Los

67

Angeles, as follows: 14 White, 22 Black, 13 Asian, 17 Latino, and 1 other. Participants included
55 (82%) female, and 42 (63%) had a college degree or higher. The demographic caregiver
characteristics of the study sample is presented in Tables 4.2 and 4.3. Focus groups lasted
approximately 2 hours in length and were transcribed in Microsoft Word. Spanish and Mandarin
recordings were transcribed by native speakers.

Data Analysis
An interpretative approach was chosen for data analysis because: 1) our goal was to
understand caregivers’ perceptions and to generate new insights about coping with relationship
strain; 2) scant knowledge already exists, and 3) data collection used semi-structured interview
techniques (Padgett, 2017). Data were analyzed according to the principles of conventional
content analysis characterized by allowing for subjective interpretation of the data using a
systemic progression of coding to identify underlying themes and patterns (Hsieh & Shannon,
2005). Conventional content analysis is useful when there is limited empirical research or theory
on the topic being studied, as is the case for how caregivers cope with relationship strain (Hsieh
& Shannon, 2005). Qualitative content analysis differs from grounded theory and
phenomenological analytic approaches in that the latter two methods go beyond analyzing the
content in order to specifically develop a theory based on observations or to describe a lived
experience (Hsieh & Shannon, 2005). Since we focused on concept development—ways that
caregivers cope with relationships strain— we selected the approach of conventional qualitative
content analysis to code transcribed data.
Analyses began with L.R. reading the text from the transcribed focus groups in their
entirety. The goal at this stage was to achieve immersion and gain an overall understanding of

68

the concepts presented by the caregivers (Hsieh & Shannon, 2005). The next step was to print
and read the first three transcripts word-for-word while making notes about reoccurring concepts
and ideas with which to generate inductively-derived codes. These became the preliminary
codes. Based on preliminary codes, L.R. created a structural coding scheme to precisely define
each code (MacQueen, McLellan, Kay, & Milstein, 1998). The goal of a structural code is to
follow the research questions closely, thus L.R. remained focused on coping strategies used by
caregivers. L.R. completed the first round of coding in NVivo 12. The 22 nodes identified during
the first round of coding became the emergent categories. After the primary codes were
developed, we reviewed them with the research team at the Secure Old Age Lab at the
University of Southern California.
A second qualitative coder, E.A. joined the project after L.R. completed the first round of
coding. E.A. and L.R. began the second round of coding after reviewing the codebook together.
The secondary coder then independently coded transcripts. The two coders met twice weekly to
review coding on one or two transcripts each meeting and reach agreement before continuing
with additional transcript coding. In total, the coders met 10 times to discuss coding decisions
and to reach consensus. We decided to focus on reaching reviewer consensus and not to quantify
intercoder agreement through calculating Cohen’s kappa or coder agreement percentages. This
approach supports meaningful agreement between coders, integrates the unique interpretations of
the coders, and supports a broader interpretation of the data (Padgett 2017). During this
discursive process, we coded transcripts in their entirety and reached saturation, wherein no
additional codes were identified (Padgett 2017). In total, 30 separate coping strategies were
identified and coded.

69

The last step was to refine the code book (MacQueen et al., 1998). In refining the code
book, we organized the 30 codes into emergent themes or clusters (Hsieh & Shannon, 2005). In
total, we identified five broad clusters into which the individual codes could be sorted. In
consultation with each coder, we developed definitions for each emergent theme and reviewed
each theme with the research team. The codebook is shown in Table 4.4.

Results
Thirty individual categories were identified through conventional content analysis. The
frequency of these individual categories is shown in Table 4.5. The 30 individual categories were
grouped into five main themes emphasized by focus group participants. We identified the
following main themes that described how caregivers cope with relationship strain: 1) Self-care;
2) Self-concept and awareness; 3) Adaptation of behaviors and feelings; 4) Respite and getting
help; and 5) Formal and informal support. Definitions and exemplar quotations are included in
each thematic area below.

Theme 1: Self-Care
The first superordinate theme that emerged from the data was how caregivers described
multiple approaches to self-care. Caregivers described several types of self-care activities
including taking time for themselves in small ways, taking intentional breaks from their
caregiving tasks, and using affirmations or repeated sayings to reassure themselves that “it will
get better.” Self-care includes the concept of tending to one’s own needs and emotions, and
caregivers described various activities that brought enjoyment such as meditation, exercise,
reading a book, talking to a friend, and listening to music.

70

Self-care. Self-care was the most frequently mentioned coping strategy, with 179
references across the nine focus groups. One participant described self-care as identifying what’s
important to oneself and attending to those needs, even in small ways: “You know, so, taking
care of yourself is super, super important. Whatever that looks like, do it. Because it doesn’t look
the same for everybody but do something every day, if you can. Even when you are tired go for a
walk. Just get out of the environment. Just do something. Whether you go to your car and listen
to music, whatever it is. Or take a nap, you know, when you can.”
Multiple caregivers demonstrated the diverse ways in which they participated in self-care,
as well as how it could take caregivers multiple tries before finding self-care activities that suited
them. Physical activity came up as a helpful self-care activity from several caregivers.

“Then I will pick a time for my own activities, I hit the gym every day, sometimes I do
exercise at night too, and doing exercises really allows you to…release your stress.”

“Reciting the scriptures is just like meditation, you lay on the bed at night, and that’s all
you need, that’s how I did it, but for you I think you need to take a deep breath, you just
take a deep breath, ok?”

Caregivers felt that by participating in self-care activities, they were better able to provide
good care to care recipients: “I’m learning to give in to take some time or space for me. Allows
me to be more generous.”

71

Take a break. The second individual code identified as part of self-care was taking a short
and intentional break from the caregiving tasks. Sometimes caregivers would walk outside or go
into a different room. Taking a break was mentioned 103 times by the focus group participants.
Affirmations. Finally, as part of self-care, we found that caregivers described using
affirmations, short sayings, or a “mantra” to reassure themselves that the situation would
eventually change or get better, or to focus on valuing the time with the care recipient. One
participant stated: “I remind myself that I’m doing my best. And that I’m doing right by her. And
that no one would question that.” Another female caregiver summed up her mantra by saying “I
have a saying, that I would say over and over to myself every day, is that ‘Today is better than
tomorrow.’”

Theme 2: Self-Concept and Awareness
While self-care included concrete actions, this next superordinate theme includes ideas
that each describe a more abstract understanding of oneself, as well as the situation and
relationships surrounding the caregiving experience. Individual codes included: boundary
setting, crying, self-concept, and understanding.
Boundary setting. Boundary setting to maintain one’s own health and well-being entailed
limiting the amount of effort or engagement one put into caregiving, particularly when the
caregiver felt the care recipient was getting on their nerves or being too demanding (e.g., not
allowing the care recipient to purchase unnecessary items or setting limits around topics to
discuss). “So, I set limitations now. I’m starting to set my limitations,” said one caregiver, “You
have to draw, you have to draw some boundaries to take care of yourself.”

72

Crying. Several caregivers described crying as a means to release stress and strain they
were experiencing. In response to conflict at mealtimes and making sure the care recipient was
eating, one caregiver said, “I get into crying for a while. […] It was just a tension reliever, you
know?” Another caregiver, a wife caring for her husband who had a stroke said of trying to
convince her husband to use a wheelchair and other assistive devices, “I’d go into the next room
and cry or whatever, and not show him that my emotions were there.” Then she would return,
“stick to what she had said,” and was able to continue providing the care he needed.
Self-concept. Self-concept refers to when the caregiver relies on feeling and beliefs about
oneself and their personality traits to cope with strain in the relationship. Examples of this code
included: “I think personally, I’m handling it all really well because at the end of the day, I’m
still fine. I’ve got lots of patience.” And another caregiver said that she relies on her kind nature
when she begins to feel frustrated. In this way, beliefs caregivers had about themselves guided
their response to challenging moments in their care relationship.
Understanding. Caregivers used understanding of the family dynamics and of the care
recipient’s situation to approach the caregiving relationship with empathy. For example, one
caregiver described putting herself in the care recipient’s shoes, “so for you to understand us too,
that one can be tired, sleepless, with pain.” Another caregiver providing care to their mother
explained these feelings of empathy by saying, “It's hard for them that they are losing control and
[…] they’re being, ‘Am I still relevant or am I still needed or am I still important?’”

Theme 3: Adapting Behavior or Feelings
Caregivers discussed a variety of coping mechanisms that broadly involved reframing,
reappraising, or adapting either behaviors or feelings toward their role and the relationship. This

73

superordinate theme included 18 unique codes, which we further divide into Adapting Behaviors
(abuse or fighting back, avoiding the care recipient, communication, compassionate fibbing,
distraction, enforcing, environmental adaptations, medication, a strategic approach to anticipated
issues and planning) and Adapting Feelings (blaming the disease, go with the flow, humor, love
and kindness, obligation, reappraisal, reciprocity, religion and spirituality, and being thankful).

Theme 3a. Adapting Behaviors.
Abuse or fighting back. In these cases, the caregiver described actively engaging in
conflict-type abuse or intentionally using abusive behavior, either physical or verbal abuse of the
care recipient, to resolve disagreements. Often the caregiver described the care recipient as
instigating the disagreement, and hence described their response as fighting back. In the focus
groups, abuse or fighting back was only referenced five times in a total of three focus group
sessions. Generally, caregivers described relying on emotional mistreatment. For example, one
caregiver described forcing her mother to take a shower in the following way: “But part of
forcing her to be a little more independent is my—I’m going to use bad word—my bullying,
because I know she can do it.” In another case, a caregiver described his yelling at his mother as
“venting.” Physical abuse – hitting – was only mentioned once in a focus group, “But, um, I just
felt a lot of frustration as I was dealing with her because I couldn’t cope. I couldn’t understand
what, I get very angry at her. I smacked her a couple times, you know. And I know you can
never do that and I never did again and it didn’t make me feel any better, but there was a couple
times when, you know, over the years she’d say such mean things to me. And, I couldn’t
understand why she wasn’t cooperating.” This caregiver attributes her response to blaming the

74

care recipient for the unkind things she said and then becoming angry. The caregivers’ lack of
relief when she used this approach conditioned her to not hit her mother again.
Avoid. Caregiver attempts to actively avoid the recipient following onset of tension. “Whatever
it takes to be safe for both of you,” said one participant describing how she managed when her
husband living with dementia would become violent towards her, “Lock yourself in a room. Get
out. Just remove yourself because you just hope and pray that if you take yourself out of the
equation at the moment that he would unwind and then be okay. You know what I mean? Just
calm back down. So just get distant and give some time, time out type of thing.” Similarly,
another caregiver described removing herself physically, but also ignoring the care recipient. “If
I have to walk away from him or take time, then I try to do that, or ignore him. With both of
them, there's a lot of guilt.” Although similar to boundary-setting, avoidance approaches were
distinct as they were unplanned and a reaction to a situation. Notably, avoidance strategies could
result in neglect.
Communication. Caregiver changed how they communicate with the care recipient to
either prevent or cope with conflict, including communicating boundaries. For care recipients
whose cognitive abilities were still intact, one wife described talking with her husband to set
expectations, as follows, “I never tried to make my husband feel as though, I know it all, I can do
it. I will tell him, ‘I need your help. Can you kindly finish so-and-so, or can you do such-and-
such?’ [moderator: A partnership.] That’s it, a partnership. Please don’t just eat and leave your
plate sitting on the table.” Together they discussed taking care of the house together, in ways that
each were able to contribute. By communicating their needs, this caregiver was prevented from
feeling resentful. Communication also helped caregivers to cope after a negative interaction
occurred: “When I think I am too unfriendly; I would go back and talk to her.”

75

A different set of communication approaches were used when caring for someone living
with a cognitive impairment. “I’ve learned how to phrase things. Uh, so that he is listening to
me and interacting,” said one caregiver. Communication that facilitated holding the care
recipient’s attention helped the caregiver to assist with tasks like bathing that the care recipient
might otherwise resist. Others similarly endorsed being conscientious of their tone and phrasing
things in a “better way” that was less likely to elicit upset from the care recipient. As a way of
regulating emotions and coping with stress and pushback in providing assistance, one caregiver
stated, “So I just stuck to what I had to say, and I meant it.”
Compassionate fibbing. Caregivers reported using Compassionate fibs, also called
“therapeutic lying” or “fiblets,” to calm down the care recipient when discussing things that
could not be changed given their disease state (e.g., dementia, Alzheimer’s disease, or stroke)
and current ability to understand and process information. “If there’s something going on and . . .
I felt her anxiety rising it’s just easier to redirect and kind of take her out of that place that she is.
I tell, we actually call them fiblets in my house.” This caregiver goes on to give an example of a
fiblet she uses to prevent her mother from becoming upset that her daughter supplements her
income: “I’m not going to tell her I’m subsidizing her income. It would just destroy her.” In
another example, a caregiver uses fiblets to reassure her the care recipient that she done what
she’s has asked of her. “So, when she says ‘Did you, did you, you know did you transfer $20
from that account to that account?’, instead of me saying ‘No, I haven’t done that yet,’ I say
‘Yep, it’s done.’ And she calms down, and I calm down and everything is fine.”
Distraction. Efforts to divert attention or distract the care recipient was a common
strategy used by caregivers to avoid relationship strain. One caregiver explained, “I also redirect
lots of times. If there’s something going on and I don’t understand I felt her anxiety rising it’s

76

just easier to redirect and kind of take her out of that place that she is.” A daughter caring for her
mother described distraction by saying “I believe that for my mother with the dementia, I try to
distract her, take her to some other route or I go along with her. There's no point in arguing.”
Finally, another caregiver described using puzzles or games as an alternate activity to refocus the
care recipient’s attention on an activity and “to get his attention off of me.”
Enforcing. Enforcing highlights the concept of maintaining or upholding rules or
household order, as described by one caregiver “And, uh, and another time he used—when he
was going through one of his depressive states he would throw things. Not at people. He would
just throw them all over the room and then when he would calm down, I would go pick it all up.
And then I thought to myself, ‘why should I have to pick it up?’ He threw it. And I told him, […]
‘I said, I don’t mind you throwing things. You can throw anything you want, but it’s not fair for
you to expect me to pick it up when you threw it. I wouldn’t do that and let the kids do that to
me. He looked at me and he went. And he went around in his wheelchair throwing things,
picking things up, and putting them back. He never threw anything again.”
Environmental adaptations. Caregiver makes changes to the environment in order to
reduce or prevent conflict related to person care tasks. This can include using new devices (e.g.,
incontinence products) or changing the environment (e.g., reducing noise, putting up post-it
reminder cues). Other environmental adaptations included using bed rails, using a cane, shower
chairs, clothes that open from the side to access catheters, and orthopedic shoes that are easier to
get on and off—anything that make personal care tasks easier to do. One caregiver discussed
using an assistive device, a commode, to help with incontinence, and although it provides help, it
still requires time and attention from the caregiver, “And then now we have a commode chair.
Well, it means she’s not dribbling, but it means I have to open the commode.” Another talked

77

about specific home modifications that allowed the caregiver and care recipient to continue to
live at home, “About 15 years ago we added the wheelchair bathroom and doubled the size of the
bedrooms so we could fit the wheelchairs in. And, we just in July we bought a wheelchair van.
And, a new wheelchair that goes right into the van and hooks. And, it’s very easy for me to take
him to the doctor now. And things like that.”
Medication. Giving the care recipient medication in an effort to mitigate challenging
behaviors was also mentioned by two caregivers. One adult daughter caring for her mother
talked about working with her mother’s doctor to add a medication to address her mother’s
anxiety, which was added to her Namenda prescription (used to treat dementia related to
Alzheimer’s disease.) Starting the medication to address anxiety “made a huge difference,” she
further explained “giving her something for anxiety did seem to take the edge off. And she didn’t
go from zero to ten over little things.” Another caregiver similarly described that her mother
would fixate on things for hours, and redirection would not help, “And she just would cry and
you’re being mean to me, and finally, uh, we give her medicine. It’s, it’s what’s working right
now.”
Strategic approach and planning. The caregiver describes specific approaches they have
started to use to avoid conflict by anticipating the needs and behavior of the care recipient. For
example, the caregiver may give the care recipient small snacks instead of arguing with a care
recipient who is always hungry and wanting to eat. For example, “I am a caregiver for my mom.
And, um, it, I try and make it a good relationship. . . It’s really difficult at times. She wants to
eat, eat, eat, and so, rather than fighting that. I don’t do that anymore. I have just, I put out
snacks, really, really small portions. And I present them to her and I explain that you can have
one of these, and then maybe in a little while you can have another.” By anticipating her

78

mother’s desire to snack, this caregiver could balance her mother’s desires with her own desire to
keep her mother healthy by limiting over-eating. Planning ahead was a particularly useful
approach when managing care recipient incontinence, a frequent cause of friction. Some
caregivers reminded the care recipient to go to the bathroom before leaving the house, even if
they do not think they need to go at the time. Others use an alarm to check if the care recipient is
wet and change diapers at regular intervals. Another strategy was taking extra clothes when
leaving the house or leaving an extra set of clean clothes ready to go at home. These strategies
prevented the caregiver from becoming upset with the care recipient over incontinence, and from
tension that occurred when caregivers tried manage the care recipient’s incontinence.

Theme 3b. Adapting Feelings.
Blame the disease. Caregivers described “blaming the disease” to better cope with
behaviors that caused strain in their relationships with the care recipient. Specifically, this code
describes caregivers reminding themselves that sometimes-aggravating behaviors by care
recipients are due to disease symptoms, and not intentional on the part of the care recipient. For
example, to prevent relationship strain, one caregiver said “Not taking everything so personal
because I get hurt. And I know that at this stage I shouldn’t be taking everything so literal from
that because it’s not her. It’s the disease.” Another stated, “I used to take it really personally in
the beginning and I’d just yell back at him and I just realized that wasn’t what it was. It’s the
disease that is, you know. And, it’s not him. And, I think sometimes the disease with the blood
sugar fluctuations really effect his mood too.” By understanding the care recipients’ context and
conditions, caregivers were better able to attribute challenging and sometimes hurtful behaviors
to the care recipient’s condition and avoid getting into a heated interaction.

79

Go with the flow. Caregivers also described trying to accept the situation they were in,
being able to adapt to changes, and not being too ridged about the way things are done to prevent
relationship strain and tension. Go with the flow was a frequent coping strategy, and it was
referenced 106 times over the nine focus groups.
One caregiver stated, “I think adjusting myself is the only key,” acknowledging that she
could adapt her behaviors but could not expect the care recipient to do so. Another caregiver
echoed this: “if you can’t change others, change yourself.” One way to do this was to follow the
care recipient’s routine: “[I’ve] learned to accept, to take advantage of her rhythms, so I have a
little time for myself.” Still another caregiver said that although the relationship is often tense,
she sings the song “Let It Go,” from the Disney movie Frozen, as a reminder to let it go and
accept what is. Another caregiver said, “Now my favorite words are yes and okay.” Many said
they try “not to sweat the small stuff.”
Going with the flow also included changing expectations. One daughter took her mom
shopping and her mom insisted on buying a red dress. She took her mom to the store, “So, we
looked at some red dresses and she picked one and we bought it. It hung in her closet days later. I
said mom, ‘I don’t know about this red dress.’ She says, ‘yah what was in my mind?’ We gave it
back. I didn’t fight her on it.” She concluded by saying, we just brought the dress back, rather
than oppose her mom for wanting the dress. Other caregivers summed up the experience of not
resisting by explaining, “I'm just saying, acceptance of the situation and loving them at that
moment where they're at. Accepting that and moving forward.”
A daughter-in-law providing care to her mother-in-law described her strategy around
addressing issues within the family structure as follows, “She is the mother-in-law and I am the
daughter-in-law. It’s a pretty good lesson to learn. … [My mother-in-law] she would turn to my

80

husband if she has questions. She turns to my husband first, so I think ‘good, this is your son, so
let’s communicate with the son if we have problems.’ So, in this relationship I am the second
hand, and my husband is on the front, and I would firstly turn to my husband if I got any problem
too.”
Humor. Many caregivers described laughing and using humor to lighten up tense
situations with the care recipient. “So, do I get frustrated, yes. But, I have learned to use humor,”
said one caregiver. Caregivers described cutting through tension, or “deflect: by saying
something funny to the care recipient. “So, for me it’s very, very just, not very easy. It’s very
hard. But I tried to do something. And I tried to just change the subject for a moment so, say
something funny, story, and then after I just change back and ask her what she wanted.” A
female caregiver talked about enjoying watching “I Love Lucy” and laughing together with her
mother, a comedy that helped them spend more time enjoying each other’s company.
Love and kindness. Caregivers discussed a variety of words and concepts that capture
their approach to caring using the underpinnings of love, kindness, patience, understanding, and
compassion. For example, “And try to learn ways to take care of myself, but just to honor him
because he deserves love, respect, and honor, and compassion.” Another caregiver said, “I
myself don’t have a good temper, not so much better now, but I am kind to my mom.” Another
spousal caregiver stated she feels “connected and satisfied” and another says she approaches
caregiving “with pleasure.” Another discussed taking the hand of the care recipient, a person
with Alzheimer’s disease, to demonstrate kindness in action.
Reappraising roles. Reappraisal involves finding a way to reframe the situation to see the
conflict in a new way. One caregiver described the shifting roles from wife to caregiver: “Well
for me, I mean, uh, I’m my husband’s wife. Then it came to caregiver, right? So, the wife had to

81

take kind of a second seat, step back, but kind of because the caregiving role but also all of his
responsibilities were lumped on to me.” By seeing this role differently, caregivers could distance
themselves from other social roles they had in the care recipient’s life when they needed to, such
that interpersonal tensions came second to care recipient’s needs. “I now say I’m the steward,”
said one caregiver “That’s just my role, I’m the caregiver.” He has reframed his orientation to
think of himself as the steward, taking care of and managing many responsibilities in an
objective way.
Reciprocity. Caregivers also drew on a sense of reciprocity to handle frustration: when
caregivers felt strain in their relationships with care recipients, they tried to remember what the
care recipient had done for them: “I try to have compassion for this tiny little old lady that has
lost so much. That sometimes helps, not always. Um, I try to be grateful to her, remind myself all
the things she did for me that, all the gifts she’s given me.” Another caregiver stated how at
mealtimes she would remind her mother how she used to feed her so she would stay patient
during this task. Still another caregiver described caregiving as a privilege, and explained “I
think it's a way of giving back. Like for me, it's my parents. It's just like a cycle.”
Religion and spirituality. Using religious teachings to provide calm and understanding
about the caregiving role. Expression of religion included going to church. “I think for me just
reading the Bible over and over and [laughs] over again has been a blessing because it helps
refocus on something positive.” Another caregiver stated, “I try to just think of all the blessings I
have in my life and how to be able to share that with somebody else.” Caregivers also described
using prayer in response to tension or strain, “I just pray whenever I, um, feel tense.”
Feeling Thankful and Expressing Gratitude. A female caring for a family friend said,
“I’m caregiving to a close friend of the family. And it is definitely gratifying because he is such a

82

warm person.” Another caregiver described the experience as rewarding, as follows: “My
grandfather, my mother’s father became paralyzed and I took care of him. And it was physically
very difficult and very demanding but very rewarding.” Another caregiver explained feelings of
thankfulness by saying, “and sometimes I think that every day at this age, every day is like for
person a gift to live.”

Theme 4: Respite and Getting Help
This theme involved two main forms of efforts to cope with caregiving tasks as described
by the caregivers in the focus groups: getting help from others and taking an extended formal
break in the form of respite care. Getting help appeared 102 times across the nine focus groups.
Respite included arranging for someone else, including an adult day care provider or paid
caregiver to take over the care responsibilities for a set period of time. One participant said she
was able to find respite care, “I was very fortunate when she was home that between you guys
[Support Group] and the Alzheimer’s society and another group called silver service for groups,
they were able to give me respite hours. And I could leave very detailed notes about her physical
care and all that, but they were all people who have dealt with, you know, the caregivers were. I
had a couple weekends. A weekend. So, they were people who knew about dementia care.”
Another caregiver described being able to reach out to a church group to schedule a
formal break from caregiving responsibilities, “I was thinking about how to recognize help.
Because sometimes help is right there or a phone call away and you don’t realize you can call a
church or you can call the group that they’re associated with, and they will help you, give you a
break.”

83

Another caregiver utilized a local adult day care provider for respite, “And my husband,
he’s much more open and then I got him into the [organization name]. So he goes a few days a
week there. That’s where he is today, and right how. And so there he plays the games, he has the
activities.”
Getting help also provided assistance and a break to the caregiver, but in a less formal
arrangement. The “PT (physical therapy) people have helped us a lot of the bed rails because she
was falling out of bed all the time. So, she doesn’t fall out of bed anymore.” Another female
caregiver described that her brother would come and help with caring for their father, and he
could assist with doing complicated meal preparation and let her take a break.

Theme 5: Formal and Informal Support
In order to learn new coping strategies, caregivers participated in formal support
opportunities such as educational classes, reading books, as well as attending informal support
groups. At one focus group that included members of a support group, a caregiver shared how
The 36-Hour Day book helped her to discover new strategies for managing her relationship with
the care recipient. This resource was shared among support group members and considered
“Bible of Alzheimer’s [caregiving]”. Other caregivers described attending educational programs
and workshops: “I read, got involved in it, and being informed in terms of workshops, getting
yourself involved in terms of a support group.” This caregivers’ active-approach to seeking
resources to better cope can be compared to more passive help-seeking methods. “Just having a
place that you can come to talk and know that you are not alone. That there are other people with
the same frustrations and dealings. And, learning some other tools to add to your toolbox.” For
this caregiver, informal supports and support group settings allowed her to learn from other

84

caregivers. Moreover, these encounters were therapeutic, and served as a place where she could
share how she felt about frustrations.

Discussion
Previous research has described the Stress Process Model for understanding caregiver
stress (Pearlin et al., 1990). As discussed above, the Stress Process Model provides a conceptual
model for caregiver stress, originally formulated from a study of caregivers to persons with
Alzheimer’s disease (Pearlin et al., 1990). Background and context of the stress process includes
demographic characteristics such as age, gender, race and ethnicity, socioeconomic status (SES)
characteristics, relationship and caregiving history, and support program availability and access
(Pearlin et al., 1990). Stressors are categorized as either primary or secondary, with primary
stressors including objective indicators (i.e., cognitive status, problematic behaviors of the care
recipient, and level of assistance needed with ADL and IADL tasks) and subjective indicators of
stress (i.e., overload or burnout and relational depravation) (Pearlin et al., 1990). Secondary
stressors include role strain (i.e., family conflict, conflict between caregiving and job duties,
economic strain, and social changes or constriction) (Pearlin et al., 1990).
Within the Stress Process Model, coping is viewed as a mediator of stress which impacts
the primary stressors, secondary role strains, secondary intrapsychic strains, and ultimately,
outcomes as described above (Pearlin et al., 1990). The role of coping is highlighted in Figure
4.1. Understanding the specific coping behaviors that caregivers describe as most successful in
managing strain in the caregiving dyad can help to protect health, well-being, and the
continuation of the caregiving relationship.

85

For caregivers experiencing strain, interventions should be developed following the five
thematic areas supporting coping described in this study: 1) Self-care; 2) Self-concept and
awareness; 3) Adaptation of behaviors and feelings; 4) Respite and getting help; and 5) Formal
and informal support. Providing support for coping in these five key areas can, in turn, seek to
mediate the primary and secondary stressors described by the Stress Process Model and possible
outcomes of depression, anxiety, and declines in physical and cognitive health.
Self-care was the most frequently mentioned coping strategy. It was discussed in every
one of the focus groups as a mechanism to cope with strain. Regarding self-care, caregivers
should be taught a variety of self-care techniques when entering the role. Some of the primary
self-care activities described by participants in the study included: meditation, exercise, healthy
eating, and talking to a friend. Caregivers also described the importance of being able to “take a
break” or step away from caregiving activities.
The adaptation of behaviors and feelings covered a variety of strategies caregivers
described to cope with stress. Some of the most commonly discussed themes included an
approach to “go with the flow,” reframing the situation, making environmental adaptations,
using humor, and relying on a sense or either reciprocity or obligation about the task. Although
rarely mentioned, abusive behavior such as actively engaging with conflict with the care
recipient to resolve disagreements was mentioned during the course of the focus groups. That
caregivers would openly discuss verbally abusive behavior is particularly noteworthy, as the next
steps in this research aims to lay a groundwork to prevent future abusive behaviors by providing
caregiving with alternative coping strategies.
Getting help and respite was another key theme discussed by the participants. Prior
research has also endorsed the positive health benefits to respite care, specifically through the

86

use of Adult Day Services. On days when older adults attended adult day service programs,
caregivers indicated significantly lower care related stressors compared with the days the care
recipient did not attend adult day services, underlining the important protection that adult day
services can play in protecting caregivers “against the effects of chronic stress associated with
caregiving” (Zarit, Kim, Femia, Almeida, & Klein, 2013).
Finally, caregivers described using learning through education and support groups to
support them in their role. Support services provided for caregivers by a variety of organizations
across the country. Organizations such as the National Alliance for Caregiving and the Family
Caregiver Alliance offer resources and connections to support groups. Additionally, dementia
care programs have been reviewed and organized into a database, Best Practice Caregiving, to
assist organizations in selecting a care program that best fits the population they serve (Best
Practice Caregiving, 2020). Such educational materials and support groups are important
services to supporting the role and identified needs of caregivers.

Limitations and Next Steps
In conventional content analysis, the study starts with observation; in this case,
observation was collected from focus groups conducted with caregivers (Hsieh & Shannon,
2005). A codebook was created according to conventional content analysis, with the source of
the codes coming from the data provided during the focus group interviews. Limitations of
conventional content analysis include that it is “limited in both theory development and
description of the lived experience, because both sampling and analysis procedures make the
theoretical relationship between concepts difficult to infer from findings” (Hsieh & Shannon,
2005, p. 1281). While model building can result, it cannot make predictions about the

87

relationships between variables, which would be the domain of directed content analysis.
Furthermore, to support or to extend an existing theory directed content analysis would be more
appropriate. And finally, in order to understand meanings of words or content, a summative
approach should be used (Hsieh & Shannon, 2005).
Although we had hoped to draw conclusions by race and ethnicity, the recruitment
technique for caregivers may have led to emphases on different coping approaches unrelated to
race/ethnicity. For example, the Black focus group participants were recruited from a church
support group for caregivers, potentially resulting in a group whose meetings and coping
strategies tended to have religious underpinnings by design.

88

Figure 4.1 Stress Process Model for Caregiver Stress (source: Pearlin et al., 1990).

Caregiving Background
& Context:
- Sociodemographics
- History of Care
Primary
Stressors
Secondary
Stressors:
Role Strains
Secondary
Stressors:
Intrapsychic Strains
Outcomes
Objective
Stressors:
- Cognitive
Status
- ADLs
- Behavior
Problems
Subjective
Stressors:
- Overload
- Loss of
Relationship
- Stress
Appraisals
- Family
Conflict
- Job-care
Conflict
- Economic
Problems
- Mastery
- Self-Esteem
- Loss of Self
-Competence
Gain
- Well-being
- Health
- Yielding of
Role
Resources:
- Coping
- Social Support

89

Table 4.1 Structured Interview Questions

Description of relationship quality and strain
• How would you describe your relationship with the person you assist? Specifically,
how do you feel about this relationship? For example, do you feel connected to the
person you care for, do you sometimes dread being around them, do you feel anxious
about your caregiving role? Do you feel a sense of satisfaction from providing care?
• In what ways did the relationship change when you starting helping them? For
example, are you closer now, has the relationship become more difficult, are there
more “ups and downs”?
• When there is conflict or you argue, does this look different now than it did before you
started helping out?

Response to tension
• How do you respond when you feel like things are becoming tense?
• Are there things you try to do to reduce tension, or that help you from saying things
you might regret?
• How do you try to resolve conflicts with the person you assist? Do you let things cool
down? Is there someone you talk to?
• Are you aware of any strategies you use to prevent conflict, tension, or arguments?

90

Table 4.2 Caregiver Characteristics (N = 67)

Table 4.2 Caregiver Characteristics (N = 67)
Frequency (%) Missing
Age (mean/SD) 60.0 (12.2) 2
Female 55 (82.1) 3
Race

0
White 14 (20.9)
Black 22 (32.8)
Asian 13 (19.4)
Latino 17 (25.4)
Other 1 (1.5)
Education

1
Less than high school degree 3 (4.5)
High school degree 2 (3.0)
Some college 19 (28.4)
College degree 31 (46.3)
Postgraduate 11 (16.4)
Employment status

0
Full time 19 (28.4)
Part time 12 (17.9)
Retired 28 (41.8)
Unemployed 6 (9.0)
Other 2 (3.0)

91

Table 4.3 Caregiving Situation (N = 67)

Table 4.3 Caregiving Situation (N = 67)
Frequency (%) Missing
Number of years caregiving (mean/SD) 8.5 (9.1) 14
Relationship to recipient

0
Wife 13 (19.4)
Husband 3 (4.5)
Daughter 34 (50.1)
Son 5 (7.5)
Other 12 (17.9)
Hours of care provided per week

5
1 to 20 23 (34.3)
21 to 40 11 (16.4)
Over 40 28 (41.8)
Recipient has dementia

2
Yes 50 (74.6)
No 10 (14.9)
Not sure 5 (7.5)

92

Table 4.4 Codebook: How Do Caregivers Cope with Strain and Tension in Their Role?

Theme 1: Self-Care
Caregivers described several types of self-care activities including taking time for themselves
in small ways and intentional breaks from the caregiving tasks.

Self-care Self-care includes tending to one’s own needs and emotions, activities
include; meditation (picturing happy place), exercise, healthy eating,
reading a book, journaling, talking to a friend. Listen to music.
Engaging in an activity to take their mind off caregiving.
Take a break Walking away to take a brief reprieve from caregiving responsibilities
and a break from the care recipient. This includes going outside or going
into a different room.
Affirmations Caregivers remind themselves that “it will get better,” “I’m fine,” or
repeating another saying.
Theme 2: Self-Concept and Awareness
Abstract understanding of oneself and surrounding situation.

Boundary setting Creating and maintaining boundaries around what the caregiver deems
acceptable.
Crying Caregivers describe crying as a means of releasing stress and strain.

Self-concept Caregiver relies on feeling and beliefs about oneself and their
personality traits (e.g., “I’m a patient person.”)
Understanding Expressing understanding and recognition of the dynamics of the
situation and related to family dynamics (this is in contrast to blaming
the specific illness or disease).

Theme 3: Adapting Behaviors and Feelings
Caregivers discussed a variety of coping mechanisms that broadly involved reframing or
adapting either behaviors or feelings to the role and relationship.

Theme 3a. Adapting Behaviors
Abuse or fighting
back
Caregiver describes actively engaging in conflict or intentionally using
abusive behavior (physical or verbal abuse of the care recipient) to
resolve disagreements. Includes withholding care needs.
Avoid Caregiver attempts to actively avoid the recipient, which may result in
neglect.
Communication Caregiver changes how they communicate with the care recipient to
either prevent or cope with conflict, including communicating
boundaries.
Compassionate
fibbing
The caregiver may use therapeutic lying to prevent conflict, especially
when the care recipient has dementia.
Distraction The caregiver describes finding ways to distract or redirect the care
recipient to either avoid or deescalate conflict.

93

Enforcing Caregivers would describe “holding the line” or sticking to their request
or method of carrying out an action.
Environmental
adaptations
Caregiver makes changes to the environment in order to reduce or
prevent conflict. This can include using new devices (e.g., incontinence
products) or changing the environment (e.g., reducing noise, putting up
post-it reminder cues).
Medication Giving the care recipient medication.
Strategic approach
to anticipated issues
and planning
The caregiver describes specific approaches they have started to use to
avoid conflict by anticipating the needs and behavior of the care
recipient, this includes prepping. For example, the caregiver may give
the care recipient small snacks instead of arguing with a care recipient
who is always hungry and wanting to eat. Planning tasks and activities
to reduce friction is also included in strategic approach.
Theme 3b. Adapting Feelings
Blame the disease Recognition that the behaviors are a result of the disease rather than of
the individual trying to be difficult. Seeing the relationship differently
changes the expectations. Recognizing the condition and not taking it
personally.
Go with the flow Feelings of acceptance, being able to adapt to changes, and not being
too ridged about the way things are done. This may also include being
more patient or learning to “let it go” and to accept the situation as it is.
Humor Using jokes and humor to lighten tension in caregiving situations.
Love and kindness The caregiver reminds himself or herself about their feelings of love and
kindness for the care recipient. They may also recall that in light of
these feelings, they only have a limited time left with their loved one.
Includes compassion.
Obligation Caregiver copes with strain by drawing on feelings of obligation,
commitment, and responsibility for fulfilling the caregiving role.
Reappraisal Finding a way to reframe the situation to see the conflict in a new way.
Reciprocity The caregiver draws on a sense of reciprocity to handle frustration.
Religion and
Spirituality
Using religious teachings to provide calm and understanding about the
caregiving role. Includes going to church.
Thankful / gratitude Caregiver reminds him or herself about feelings of gratitude and
thankfulness for the opportunity to spend time and assist their loved
one.
Theme 4: Respite and Get Help
Taking an extended break from the caregiving task involved two main forms as described by
the caregivers in the focus groups: getting help from others and taking an extended formal
break in the form of respite care.

Get help Caregiver seeks help with tasks or emotional support from others to
cope with tension and frustration. An immediate request for assistance.
Including professional help with tasks (e.g., help from a physical
therapist, occupational therapist, or other medical professional)

94

Respite care Taking a planned and extended break from caregiving duties, for a few
hours or a few days (can be paid or unpaid). (Not walking away from
the situation for a moment).
Theme 5: Formal and Informal Support
In order to learn new coping strategies, caregivers attended education classes, read books, and
attended support groups.

Formal Support /
Education
Caregiver describes seeking materials to learn coping strategies,
attending programs or classes, and gathering reading materials or books
to reduce or address conflict. Education includes attention classes.
Informal / Support
Group
Caregiver attends formal support group to alleviate stress and tension
and to learn techniques from other caregivers.

95

Table 4.5 Coding Frequency
Table 4.5 Coding Frequency (N = 9)

Focus Group Number 1 2 3 4 5 6 7 8 9 Total

Coding Frequency

Abuse 3 0 0 4 0 0 0 0 0 7
Affirmation 2 0 0 0 6 4 0 0 0 12
Avoid 2 0 5 0 9 6 2 0 2 26
Blame the disease 2 3 12 8 11 12 2 4 11 65
Boundary Setting 0 0 0 5 0 0 0 0 0 5
Communication 6 9 6 5 8 4 0 9 20 67
Compassionate Fibbing 0 12 4 0 0 0 0 0 0 16
Distraction 0 5 0 0 0 9 2 2 2 20
Education 12 6 10 7 15 9 4 2 10 75
Enforcing 0 0 0 2 3 0 0 0 2 7
Environmental adaptations 8 13 6 9 19 0 4 0 0 59
Get help 9 12 14 18 27 5 4 1 12 102
Go with the flow 0 17 22 23 5 6 9 13 11 106
Humor 15 2 7 4 3 6 5 19 0 61
Love and Kindness 0 2 7 6 11 6 5 26 6 69
Obligation 3 0 0 4 5 5 0 2 7 26
Planning 2 0 0 3 0 0 0 0 0 5
Reappraisal 8 0 19 12 0 6 8 3 4 60
Reciprocity 0 0 5 0 0 5 1 6 6 23
Referring to one's personality 0 2 0 0 0 0 0 0 0 2
Religion 20 2 6 0 6 0 7 2 20 63
Respite care 17 0 4 11 4 0 2 2 2 42
Self-care 5 7 34 38 41 17 20 3 14 179
Self-concept 2 1 4 0 9 5 3 0 8 32
Strategic approach 14 10 13 15 12 6 2 0 8 80
Support group 11 5 8 10 8 6 6 4 4 62
Take a break 8 9 15 14 14 8 8 8 19 103
Thankful 2 1 0 5 0 5 4 2 0 19
Understanding 0 2 5 0 4 7 0 13 8 39
Total 151 120 206 203 220 137 98 121 176

96

Chapter 5: Conclusion

Demand for Caregivers
Given the societal shifts and demographic trends, the demand for caregivers will continue
to increase in the coming years. The “caregiver support ratio” has been defined as the number of
potential caregivers to the number of people ages 80 and older (Feinberg & Spillman, 2019).
Currently, the number of “potential caregivers” has included people ages 45 to 64, whose age
range is the most common for caregiving. Increasing care needs will lead to increased demands
on current caregivers, increased needs for younger generational cohorts to provide care, and
greater usage of paid help – or the need for some combination of all three (Feinberg & Spillman,
2019). The demographic overview provided by the BRFSS 2015-2017 data indicate that those in
the Millennial and Generation X generational cohorts are already taking on these increased
caregiving demands, while also often working and raising children.

Summary of Research Findings
These studies have added to our understanding of who provides care in America, what the
changing caregiver demographics look like by generational cohort, and how support can be
targeted to caregivers to help them fulfill their important roles. As described in the Stress Process
Model, various factors – background and context, primary and secondary stressors, the mediating
resources of coping and social support – interact to produce outcomes, such as changes to health,
well-being, and role yielding (Pearlin et al., 1990). Each of these components was considered as
part of this dissertation and will be reviewed as they relate back to the four domains of the Stress
Process Model and our current understanding of caregiving.

97

Beginning with the caregiving context, it is first necessary to understand the
sociodemographic characteristics of caregivers and history of the care relationships. Chapter 2
reviewed what we know about the characteristics of caregivers. Sociodemographic features
include age, gender, and ethnicity. Important contextual factors include educational attainment,
employment status, if there are children also being cared for, and the health of the caregiver, as
well as the history of the relationship (i.e., who is providing care – a child or spouse).
In Chapter 2, we found that approximately one in five adults in the United States
provided care to a family member or friend in the past 30 days. Women, rather than men, largely
made up the caregiver population, although this is changing within younger generational cohorts.
Of caregivers across all generational cohorts, approximately 60% are women.
Next, we considered age, with a particular focus on generational cohorts. Those in the
Millennial, Generation X, and Baby Boomer cohorts provided the majority of care, with those in
the Silent Generation providing less care. Specifically, of caregivers, about one-quarter were
Millennials, one-quarter were in Generation X, and more than two-thirds were Baby Boomers.
Other important contextual factors include education and employment. More than half of
caregivers were employed for wages, meaning that – especially for younger generations of
caregivers – they were balancing care for both older adults and children during their prime years
of employment.
Of those caring for more than five years, one in five had been caring for their mother, and
more than one in ten for their husband. Having a complete and accurate picture of who provides
care can help service providers and policy makers target interventions for caregivers who are
most in need of assistance and support.

98

Chapter 3 added to our understanding of the outcomes associated with caregiving,
specifically well-being. In this study, we examined a nationally representative sample of more
than 50,000 caregivers to understand the shifting demographics of family caregivers across
generational cohorts, and how generational characteristics are associated with well-being (i.e.,
self-reported days of stress, depression, and emotional problems).
Beginning with sociodemographic characteristics, differences across gender and race
were observed in different generational cohorts. Among caregivers in the Baby Boomer cohort,
about 65% of caregivers were female and 35% were male, which was also true for caregivers in
Generation X. However, among Millennial caregivers, about 58% were female and 42% were
male, indicating that although a majority of caregivers were female, more males were taking on
this role in the Millennial generational cohort.
Shifting demographics in regard to race and ethnicity were also observed across
generational cohorts. For example, about 80% of caregivers in the Baby Boomer generational
cohort were White, non-Hispanic, about 70% in Generation X, and about 62% of Millennial
caregivers were White, non-Hispanic. About 9% of caregivers in the Baby Boomer generational
cohort were Black, non-Hispanic, about 12% in Generation X, and about 13% of Millennial
caregivers were Black, non-Hispanic. And about 3% of Silent Generation caregivers were
Hispanic, about 5% of Baby Boomer caregivers, about 9% of Generation X, and about 14% of
Millennial caregivers were Hispanic. The change in racial and ethnic composition of caregivers
points to the increasing diversity among younger generations of caregivers.
In order to see how the outcome domain of the Stress Process Model was impacted,
Negative Binomial Regression was used to show that Baby Boomers, Millennials, and
Generation X caregivers have increasingly more self-reported days of “stress, depression, and/or

99

problems with emotions” compared to Silent Generation caregivers. These differences across
generational cohorts show that Millennial caregivers and Generation X caregivers are
experiencing more stress than older generations of caregivers. These higher levels of stress,
depression, and problems with emotions indicate that younger generations of caregivers have
increased need for support than older generations of caregivers. Resources for support can
include increased coping strategies and social support.
Further, rather than assuming that the policies and interventions designed for older
generations of caregivers will now fit younger generations, implications of this work can help
inform: 1) the design of programs targeted to support caregivers’ mental health, and 2) policy
considerations that address the unique needs of a younger caregiver population. Specifically,
interventions and solutions that are technology based and can be accessed from mobile devices
may be a particularly good fit for reaching younger generations of caregivers. Additionally,
asynchronous support – that can be accessed at any time of the day or night – may best help
reach Millennial and Generation X caregivers at times that are convenient to them as they may
have small, scattered breaks throughout their time working and caring for older persons and
children.
Finally, Chapter 4 described the coping strategies used by family caregivers in-depth.
Focus groups, conducted with ethnically and racially diverse caregivers in Los Angeles, helped
us better understand approaches to coping with stress in the caregiving relationship, and revealed
a wide variety of mechanisms used to cope with strain.
Thirty individual categories were identified through conventional content analysis, with
five overarching themes that emerged from the data. The five themes emphasized by focus group
participants were: 1) Self-care; 2) Self-concept and awareness; 3) Adaptation of behaviors and

100

feelings; 4) Respite and getting help; and 5) Formal and informal support. These themes build
out and provide a detailed picture of the mechanisms conceptualized as part of the resources that
impact and help mitigate the secondary stressors and outcomes in the Stress Process Model for
Caregiving.
Social support was described by focus group participants in two of the emergent themes:
respite and getting help and formal and informal support. Many focus group participants
described that value of respite care, including programs such as adult day services and scheduled
respite care hours where others could take over the caregiving responsibilities for a period of
time and provide caregivers a break from care tasks. Formal and informal support was helpful to
caregivers in coping with stress. Specifically, focus group participants described learning coping
strategies from other caregivers and from educational resources such as books or support groups.
They described support groups as having the value of providing additional tools in their toolbox
and a place to share frustrations. Using the coping strategies described by caregivers as an
organizing framework can help build out programs and resources that will best meet the needs of
family caregivers.

Promising Interventions for Caregivers
In order to provide critical support to caregivers, we should think about how to improve
and augment resources to ensure that they support coping through provision of social support.
Targeted social support can be delivered across a three-level model (Schulz et al., 2016). In the
2016 report from the National Academies Press, Families Caring for an Aging America, Schulz
outlines a framework for Caregiver Interventions (Schulz et al., 2016). Schulz describes this
three-level model of assisting and supporting family caregivers, as follows:

101

• Societal – This includes policies at the federal level, such as the Family Medical Leave
Act (FMLA);
• Organizational – This includes workplace policies to support family caregivers and
respite services (e.g., Adult Day Care Services); and
• Individual – This includes family, friends, neighbors aiding caregivers in the tasks they
perform (Schulz et al., 2016).
At the organizational level, respite care has been shown to be an effective intervention for
caregivers. A 2013 study by Zarit and colleagues explored the effects of using adult day services
on caregivers of persons with dementia. The study participants included 173 family caregivers
living in the same household with the care recipient across a range of study sites (i.e., Northern
and Central New Jersey; Philadelphia and Pittsburgh, Pennsylvania; Northern Virginia; and
Denver, Colorado). The participants were contacted for in-home or telephone interviews on 8
consecutive days (Zarit et al., 2013).
By measuring whether or not the care recipient went to an adult day service program that
day and evaluating daily stressors, researchers were able to examine the association between care
features (i.e., adult day care use) and care-related or non-care-related stressors (i.e., “arguments
with other people, avoiding an argument, stressors affecting friends or family, health-related
issues, financial issues, work-related events, or any other incidents”). Each stressor was self-
rated on a 1 to 5 scale, with higher scores indicating very stressful incidents. Researchers also
measured the daily psychological distress using a 22-item scale that included anxiety, depression,
anger, and positive affect and considered age, gender, and the caregiver’s employment status as
covariates in two-level multilevel models (Zarit et al., 2013).

102

Participants in the study indicated significantly lower care-related stressors on days when
the care recipient attended adult day service programs compared with the days the care recipient
did not attend adult day services. The implications of this research indicated “that stressors on
caregivers are partly lowered, and affect is improved on adult day service days, which may
provide protection against the effects of chronic stress associated with caregiving” (Zarit et al.,
2013).
While there are more than 200 dementia interventions for caregivers that have been
contributed to the evidence base through randomized clinical trials, organizations need a way to
systematically find and select programs that best serve their population of caregivers (Gitlin et
al., 2015). A “translational phase” is now needed in which these interventions are tested and
developed outside of the clinical trial setting. Funding and coordination to roll out such programs
on a large scale is also essential (Gitlin et al., 2015). More work is needed, but excellent
programs and evidence do already exist to help support family caregivers.

Policy Implications
Systematic approaches to care are needed to support family caregivers. At the federal
level, additional coordination of programs and services can assist caregivers in accessing support
and education. The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers
Act was signed in January 2018 and “requires the U.S. Department of Health and Human
Services to develop and maintain a strategy to recognize and support” family unpaid caregivers
in the US (AARP, 2019).
The primary goals of the RAISE Act are as follows:

103

• “Improving the collection and sharing of information on family caregiving, especially as
it relates to promising practices and innovative models for care.
• Better coordinating and assessing existing federal programs to recognize and support
family caregivers, maximize their effectiveness and avoid duplication.
• Assisting and informing state and local efforts to support family caregivers.” (AARP,
2019)
There is a need for policy solutions, such as the RAISE Act, which aim to improve support
and coordination for services for family caregivers, and more general policy changes that
augment the social safety net in general. For example, providing all people in the United States,
regardless of age, with access to universal health coverage that is not tied to employment status
would specifically assist caregivers as their own health insurance would not be tethered to
employment if they need to take time away from working in order to care for an older relative or
child.

Limitations
Although the BRFSS provides a useful tool to explore caregiver well-being, there is a
need for more longitudinal datasets that follow caregivers over a period of time to better
understand the implications of caregiving.
The focus group interviews with caregivers provided critical insight into the range of
coping mechanisms used to deal with strain in the caregiver role; however, more research is
needed to further understand if different groups prefer different types of coping strategies. In
order to identify potential differences across ethnic and racial groups, larger survey data coupled

104

with more extensive qualitative interviews and focus groups, would be useful to identify trends
and preferences.

Conclusion
Caregiving has been a topic of interest for a long period of time, during which important
contributions have been made to the field. Early work focused more heavily on the negative
consequences of caregiving without exploring the positive aspects of the role. The co-existence
of both positive and negative consequences to the caregiving role provides good theoretical
evidence to continue to conceptualize caregiving as two sides of a coin, and serves as an
important reminder to look at the impact of caregiving in a wholistic manner.
While there are now studies that explore both negative and positive aspects of family
caregiving, more quantitative studies on positive aspects of caregiving are needed. Themes of
increased meaning, purpose, self-efficacy, and family togetherness can be studied using
quantitative approaches and research methods. Additionally, any moderating or protective factors
should also be further explored because the issue is so complicated.
Furthermore, the field needs more longitudinal studies on both positive and negative
aspects of caregiving. In 1999, Schulz & Beach used a four-year follow-up interval to study the
impact of caregiving on mortality. That study is now more than 20 years old and more recent
data on the topic would be of interest. Additionally, in 2014 Roff and colleagues collected data at
baseline, six, 12, and 18 months; however, more current longitudinal and prospective studies are
needed.
Though significant differences were not found for some dependent variables examined,
these factors can be further explored to potentially rule out explanatory variables or mediating

105

and moderating effects. Roff’s study provides an exemplary discussion of which variables (i.e.,
race) did not differ significantly and why.
Family caregiving is a complicated issue, with outcomes that encompass both positive
and negative consequences. More and more, as the population of our country ages, family
caregivers will play an increasing important and needed role in society. We need to see more
research to support family caregivers in their role and more adaptations of effective interventions
to assist family caregivers in the critical role they provide.

106

References

AARP (2019). RAISE Family Caregivers Act Promises Federal Help. October 15, 2019.
Retrieved at: https://www.aarp.org/politics-society/advocacy/caregiving-advocacy/info-
2015/raise-family-caregivers-act.html.
AARP (2015). Caregiving in the U.S. AARP 2015 report.
http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-
report-revised.pdf.
Accius, J., and Yeh, J.C. (2016). America Must Invest In Its Next Generations. Journal of the
American Society on Aging 40(4): 101-107.
Adelman, R., Tmanova, L., Delgado, D., Dion, S., & Lachs, M. (2014). Caregiver Burden: A
Clinical Review. JAMA, 311(10), 1052–1060. https://doi.org/10.1001/jama.2014.304
Almgren, G. (2018). Health Care, Politics, Policy and Services: A Social Justice Analysis. New
York, NY: Springer Publishing Company.
Anderson, L., Edwards, V., Pearson, W., Talley, R., Mcguire, L., & Andresen, E. (2013). Adult
caregivers in the United States: characteristics and differences in well-being, by caregiver
age and caregiving status. Preventing Chronic Disease, 10, E135.
https://doi.org/10.5888/pcd10.130090.
Aranda, M. P., & Knight, B. G. (1997). The influence of ethnicity and culture on the caregiver
stress and coping process: a sociocultural review and analysis. Gerontologist, 37(3), 342-
354. doi:10.1093/geront/37.3.342.
Associated Press (AP)–NORC Center for Public Affairs Research. 2018. Younger Adults’
Experiences and Views on Long-Term Care. Chicago: AP–NORC Center.
Au, A., Lai, M. K., Lau, K. M., Pan, P. C., Lam, L., Thompson, L., & Gallagher-Thompson, D.
(2009). Social support and well-being in dementia family caregivers: the mediating role
of self-efficacy. Aging Ment Health, 13(5), 761-768.
doi:doi.org/10.1080/13607860902918223.
Beeson, R.A. (2003). Loneliness and depression in spousal caregivers of those with Alzheimer’s
disease versus non-caregiving spouses. Archives of Psychiatric Nursing 17(3): 135-143.
Best Practice Caregiving (2020). Accessed at: https://bpc.caregiver.org/#home
Bernasek, A., & Shwiff, S. (2001). Gender, risk, and retirement. Journal of Economic Issues,
35(2), 345-356.
Birditt, K. S., Newton, N. J., Cranford, J. A., & Ryan, L. H. (2016). Stress and Negative
Relationship Quality among Older Couples: Implications for Blood Pressure. J Gerontol
B Psychol Sci Soc Sci, 71(5), 775-785. doi:10.1093/geronb/gbv023.

107

Blieszner, R., Roberto, K. A., Wilcox, K. L., Barham, E. J., & Winston, B. L. (2007).
Dimensions of Ambiguous Loss in Couples Coping With Mild Cognitive Impairment*.
Family Relations, 56(2), 196-209. doi:https://doi.org/10.1111/j.1741-3729.2007.00452.x.
BlueCross BlueShield. (2019). Two million commercially insured Americans diagnosed with
major depression are not seeking any treatment. Retrieved from
https://www.bcbs.com/the-health-of-america/articles/two-million-commercially-insured-
americans-diagnosed-major-depression-not-seeking-treatment.
Boise, L., Congleton, L., & Shannon, K. (2005). Empowering Family Caregivers: The Powerful
Tools for Caregiving Program. Educational Gerontology, 31(7), 573-586.
doi:https://doi.org/10.1080/03601270590962523.
Brodaty, H., & Arasaratnam, C. (2012). Meta-analysis of nonpharmacological interventions for
neuropsychiatric symptoms of dementia. Am J Psychiatry, 169(9), 946-953.
doi:10.1176/appi.ajp.2012.11101529.
Burgdorf, J., Roth, D. L., Riffin, C., & Wolff, J. L. (2019). Factors Associated With Receipt of
Training Among Caregivers of Older Adults. JAMA Intern Med, 179(6), 833-835.
doi:10.1001/jamainternmed.2018.8694.
Cantor, M.H. (1983). Strain Among Caregivers: A Study of Experience in the United States. The
Gerontologist 23(6): 597-604.
Capistrant, B. D., Moon, J. R., Berkman, L. F., & Glymour, M. M. (2012). Current and long-
term spousal caregiving and onset of cardiovascular disease. J Epidemiol Community
Health, 66(10), 951-956. doi:10.1136/jech-2011-200040.
Carr, D., Cornman, J. C., & Freedman, V. A. (2017). Disability and Activity-related Emotion in
Later Life: Are Effects Buffered by Intimate Relationship Support and Strain? J Health
Soc Behav, 58(3), 387-403. doi:10.1177/0022146517713551.
Carver, C. S. (1997). You want to measure coping but your protocol's too long: consider the brief
COPE. Int J Behav Med, 4(1), 92-100. doi:10.1207/s15327558ijbm0401_6.
Cavanaugh, J. (2010). Aging in America. Caregiving and Health. Santa Barbara, Calif:
Praeger/ABC-CLIO.
Centers for Disease Control and Prevention (CDC) 2017.
https://www.cdc.gov/brfss/about/index.htm.

Centers for Disease Control and Prevention (CDC) 2019.
https://www.cdc.gov/brfss/about/about_brfss.htm.

Centers for Disease Control and Prevention (CDC), Behavioral Risk Factor Surveillance System
(BRFSS) (2018). LLCP 2017 Codebook Report; Overall version weighted with
_LLCPWT. October 9, 2018.

108

Cheng, S., Mak, E., Lau, R., Ng, N., & Lam, L. (2016). Voices of Alzheimer Caregivers on
Positive Aspects of Caregiving. Gerontologist, 56(3), 451-460.
doi:https://doi.org/10.1093/geront/gnu118.

Chesla, C., Martinson, I., & Muwaswes, M. (1994). Continuities and Discontinuities in Family
Members' Relationships with Alzheimer's Patients. Family Relations, 43(1), 3-9.

Crimmins, E. and Beltrán-Sánchez, H. (2010). “Mortality and Morbidity Trends: Is There
Compression of Morbidity?” Journals of Gerontology: Social Sciences, 66B(1): 74-86.
Dassel, K., and Carr, D. (2016). Does Dementia Caregiving Accelerate Frailty? Findings From
the Health and Retirement Study, The Gerontologist, Volume 56, Issue 3, 1 June 2016,
Pages 444–450, https://doi.org/10.1093/geront/gnu078.
Denaro, L., Giorgi, G., Sderci, F., and Fiz-Perez, J. (2018). Work Engagement in Different
Generations. Journal of Occupational Health and Safety Management 19(166): 145-150.
Dimock, M. (2019). Defining generations: Where Millennials end and Generation Z begins. Pew
Research Center. Retrieved from https://www.pewresearch.org/fact-
tank/2019/01/17/where-millennials-end-and-generation-z-begins/.
El Masry, Y., Mullan, B. and Hackett, M. (2013). Psychosocial experiences and needs of
Australian caregivers of people with stroke: prognosis messages, caregiver resilience, and
relationships. Topics in Stroke Rehabilitation, 20(4): 356–68.
Endler, N. S., & Parker, J. D. (1990). Multidimensional assessment of coping: a critical
evaluation. J Pers Soc Psychol, 58(5), 844-854. doi:10.1037//0022-3514.58.5.844.
Farber, N., Shinkle, D., Lynott, J., Fox-Grage, W., & Harrell, R. (2011). Aging in Place: A State
Survey of Livability Policies and Practices. United States, Washington D.C.: AARP and
National Conference of State Legislatures. Retrieved from
https://assets.aarp.org/rgcenter/ppi/liv-com/aging-in-place-2011-full.pdf.
Farnsworth, J., & Boon, B. (2010). Analysing group dynamics within the focus group.
Qualitative Research, 10(5), 605–624. https://doi.org/10.1177/1468794110375223.
Fauth, E. B., Zarit, S. H., Femia, E. E., Hofer, S. M., & Stephens, M. A. (2006). Behavioral and
psychological symptoms of dementia and caregivers' stress appraisals: intra-individual
stability and change over short-term observations. Aging Ment Health, 10(6), 563-573.
doi:https://doi.org/10.1080/13607860600638107.
Feinberg, L. (2018). Breaking New Ground: Supporting Employed Family Caregivers with
Workplace Leave Policies. Washington, DC: AARP Public Policy Institute.
Feinberg, L., Reinhard, S., Houser, A., & Choula, R. (2011). Valuing the Invaluable, 2011
Update. Retrieved from http://assets.aarp.org/rgcenter/ppi/ltc/i51-caregiving.pdf.

109

Feinberg, L.R., and Spillman, B.C. (2019). Shifts in Family Caregiving—and a Growing Care
Gap. The Financing of Long-Term Care: An American Conundrum 43(1): 73-77.
Retrieved from http://search.proquest.com/docview/2235646762/.
Flinn, B. (2018). Millennials: The Emerging Generation of Family Caregivers. AARP Public
Policy Institute. Retrieved from:
https://www.aarp.org/content/dam/aarp/ppi/2018/05/millennial-family-caregivers.pdf.
Giovannetti, E. R., & Wolff, J. L. (2010). Cross-survey differences in national estimates of
numbers of caregivers of disabled older adults. The Milbank quarterly, 88(3), 310–349.
https://doi.org/10.1111/j.1468-0009.2010.00602.x.
Gitlin, L., & Hodgson, N. (2015). Caregivers as therapeutic agents in dementia care: The context
of caregiving and the evidence base for interventions. In R. Kane & J. Gaugler (Eds.),
Family Caregiving in the New Normal (pp. 305-353): Academic Press.
Gitlin, L. N., Marx, K., Stanley, I. H., & Hodgson, N. (2015). Translating Evidence-Based
Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps.
Gerontologist, 55(2), 210-226. doi:10.1093/geront/gnu123.
Gitlin, L. N., Winter, L., Dennis, M. P., Hodgson, N., & Hauck, W. W. (2010). A biobehavioral
home-based intervention and the well-being of patients with dementia and their
caregivers: the COPE randomized trial. JAMA, 304(9), 983-991.
doi:doi:10.1001/jama.2010.1253.
Glauber, R., & Day, M. (2018). Gender, Spousal Caregiving, and Depression: Does Paid Work
Matter? Journal of Marriage and Family, 80(2), 537–554.
https://doi.org/10.1111/jomf.12446.
Hawken, T., Turner-Cobb, J., & Barnett, J. (2018). Coping and adjustment in caregivers: A
systematic review. Health Psychol Open, 5(2), 2055102918810659.
doi:10.1177/2055102918810659.
Health and Retirement Study (2018). https://hrs.isr.umich.edu/documentation/codebooks.
Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis.
Qualitative Health Research, 15, 1277-1288.
Heo, G. J., & Koeske, G. (2013). The role of religious coping and race in Alzheimer's disease
caregiving. J Appl Gerontol, 32(5), 582-604.
doi:https://doi.org/10.1177/0733464811433484.
Kahana, Eva, Loren Lovegreen, and Boaz Kahana. (2011). “Long-Term Care: Tradition and
Innovation” in R.A. Setterson Jr. and J.L. Angel, Eds. Handbook of Sociology of Aging,
Chapter 36: 583-602.
Kiecolt-Glaser, J. K., Loving, T. J., Stowell, J. R., Malarkey, W. B., Lemeshow, S., Dickinson,
S. L., & Glaser, R. (2005). Hostile marital interactions, proinflammatory cytokine

110

production, and wound healing. Arch Gen Psychiatry, 62(12), 1377-1384.
doi:10.1001/archpsyc.62.12.1377.
Khatutsky, G., and Greene, M.E. (2019) How Many Long-Term-Care Surveys and Polls Do We
Need? Generations (43)1: 23-30.
Kim, Y. & Schulz, R. (2008). Family caregivers' strains: comparative analysis of cancer
caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and
Health, 20(5), 483-503.
Knight, B. G., & Sayegh, P. (2010). Cultural values and caregiving: the updated sociocultural
stress and coping model. J Gerontol B Psychol Sci Soc Sci, 65B(1), 5-13.
doi:10.1093/geronb/gbp096.
Lavela, S.L., & Ather, N. (2010). Psychological health in older adult spousal caregivers of older
adults. Journal of Chronic Illness 6: 67-80.
Lazarus, R., & Folkman, S. (1984). Stress, Appraisal and Coping. New York: Springer.
Lee, K., Martin, P., & Poon, L. (2017). Predictors of caregiving burden: Impact of subjective
health, negative affect, and loneliness of octogenarians and centenarians. Aging & Mental
Health, 21(11), 1214-1221.
Lee, Y., & Tang, F. (2015). More Caregiving, Less Working: Caregiving Roles and Gender
Difference. Journal of Applied Gerontology, 34(4), 465–
483. https://doi.org/10.1177/0733464813508649.
Lee, Y., Tang, F., Kim, K. H., & Albert, S. M. (2015). The Vicious Cycle of Parental Caregiving
and Financial Well-being: A Longitudinal Study of Women. J Gerontol B Psychol Sci
Soc Sci, 70(3), 425-431. doi:10.1093/geronb/gbu001.
Leggett, A. N., Sonnega, A. J., & Lohman, M. C. (2019). Till Death Do Us Part: Intersecting
Health and Spousal Dementia Caregiving on Caregiver Mortality. J Aging Health,
898264319860975. doi:10.1177/0898264319860975.
Lwi, S. J., Ford, B. Q., Casey, J. J., Miller, B. L., & Levenson, R. W. (2017). Poor caregiver
mental health predicts mortality of patients with neurodegenerative disease. Proc Natl
Acad Sci U S A, 114(28), 7319-7324. doi:10.1073/pnas.1701597114.
MacQueen, K. M., McLellan, E., Kay, K., & Milstein, B. (1998). Codebook development for
team-based qualitative analysis. Cultural Anthropology Methods, 10(2), 31-36.
McCallum, T. J., Longmire, C. F., & Knight, B. G. (2007). African American and White Female
Caregivers and the Sociocultural Stress and Coping Model. Clinical Gerontologist, 30(4),
25-37. doi:10.1300/J018v30n04_02.
Meisner, B., & Binnington, L. (2017). I'm So Glad You're Here: Positive Aspects of Informal
Caregiving. Journal of the American Geriatrics Society, 65(1), E25-E26.

111

Moen, Phyllis. (1996). “Gender, Age, and the Life Course” in Handbook of Aging and the Social
Sciences, R.H. Binstock and L.K. George, Eds., Chapter 10: 171-187.
Mosqueda, L., Burnight, K., Gironda, M., Moore, A., Robinson, J., & Olsen, B. (2016). The
Abuse Intervention Model: A Pragmatic Approach to Intervention for Elder
Mistreatment.
Musich, S., Wang, S. S., Kraemer, S., Hawkins, K., & Wicker, E. (2016). Caregivers for older
adults: Prevalence, characteristics, and health care utilization and expenditures. Journal of
Geriatric Nursing (38): 9-16.
National Academies of Sciences, Engineering, and Medicine. (2016). Families Care for an Aging
America. Washington, DC: The National Academies Press. Retrieved from:
https://www.nap.edu/catalog/23606/families-caring-for-an-aging-america.
National Alliance for Caregiving (NAC) and the AARP Public Policy Institute (AARP). (2015).
Caregiving in the U.S. Retrieved from
https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-
report-revised.pdf.
Neufeld, A., & Harrison, M. (1995). Reciprocity and social support in caregivers' relationships:
Variations and consequences. Qual Health Res, 3(5), 348-365.
Newsom, J. T., Rook, K. S., Nishishiba, M., Sorkin, D. H., & Mahan, T. L. (2005).
Understanding the relative importance of positive and negative social exchanges:
examining specific domains and appraisals. J Gerontol B Psychol Sci Soc Sci, 60(6),
P304-P312. doi:10.1093/geronb/60.6.p304.
Norton, Smith, Ostbye, Tschanz, Corcoran, Schwartz, Pieryy, Rabins, Steffens, Welsh-Bohmer.
(2009). Spousal dementia caregiving as a risk factor for incident dementia. Alzheimer's &
Dementia: The Journal of the Alzheimer's Association,5(4), P380-P381.
O’Dwyer, S., Moyle, W., Zimmer-Gembeck, M., & De Leo, D. (2016). Suicidal ideation in
family carers of people with dementia. Aging & Mental Health, 20(2), 222-230.
O’Shaughnessy, C. V. (2012). Family caregivers: The primary providers of assistance to people
with functional limitations and chronic impairments. National Health Policy Forum,
George Washington University.
Padgett, D. K. (2017). Qualitative Methods in Social Work Research, 3rd ed. Thousand Oaks,
CA: Sage.
Pavalko, Eliza K. (2011). “Caregiving and the Life Course: Connecting the Personal and the
Public” in R.A. Setterson Jr. and J.L. Angel, Eds. Handbook of Sociology of Aging,
Chapter 37: 603-618.
Pearlin, L. I. (1989). The Sociological Study of Stress. Journal of Health and Social Behavior,
30(3). doi:10.2307/2136956.

112

Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress
process: an overview of concepts and their measures. Gerontologist, 30(5), 583-594.
doi:https://doi.org/10.1093/geront/30.5.583.
Pew Research Center. (2015, September 3). The Whys and Hows of Generations Research.
Retrieved online at: http://www.people-press.org/2015/09/03/the-whys-and-hows-of-
generations-research/.
Pew Research Center (2019, January 17). Defining generations: Where Millennials end and
Generation Z begins. Retrieved online at: https://www.pewresearch.org/fact-
tank/2019/01/17/where-millennials-end-and-generation-z-begins/.
Pickering, C. E., Mentes, J. C., Moon, A., Pieters, H. C., & Phillips, L. R. (2015). Adult
Daughters' Descriptions of Their Mother-Daughter Relationship in the Context of
Chronic Conflict. J Elder Abuse Negl, 27(4-5), 356-376.
doi:https://doi.org/10.1080/08946566.2015.1093987.
Pinquart, M., & Sörensen, S. (2003). Differences Between Caregivers and Noncaregivers in
Psychological Health: A Meta-Analysis. Journal of Psychology and Aging 18(2): 250-
267.
Rainville, C., Skufca, L., & Mehegan, L. (2016, November). Family Caregiving and Out-of-
Pocket Costs: 2016 Report. (Report for the AARP) Retrieved online at:
http://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2016/family-
caregiving-cost-survey-res-ltc.pdf.
Reinhard, S.C, Feinberg, L.F., Choula, R., and Houser, A. (2015). Valuing the Invaluable: 2015
Update. AARP Public Policy Institute. Retrieved from:
https://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-
new.pdf .
Riffin, C., Van Ness, P. H., Wolff, J. L., & Fried, T. (2017). Family and Other Unpaid
Caregivers and Older Adults with and without Dementia and Disability. Journal of the
American Geriatrics Society, 65(8), 1821-1828. doi:https://doi.org/10.1111/jgs.14910.
Rippon, I., Quinn, C., Martyr, A., Morris, R., Nelis, S. M., Jones, I. R., . . . Clare, L. (2019). The
impact of relationship quality on life satisfaction and well-being in dementia caregiving
dyads: findings from the IDEAL study. Aging Ment Health, 1-10.
doi:10.1080/13607863.2019.1617238.
Roberto, K., McCann, B., & Blieszner, R. (2011). Trajectories of care: Spouses coping with
changes related to mild cognitive impairment. Dementia, 12(1), 45-62.
doi:10.1177/147130121142123.
Roff, L., Lee, L. D., Burgio, Gitlin, L., Nichols, L., Chaplin, W., and Hardin, J.M. (2004).
“Positive Aspects of Alzheimer’s Caregiving: The Role of Race.” Journal of
Gerontology: Psychological Sciences, 59B(4): P185-P190.

113

Rook, K. S. (2015). Social Networks in Later Life: Weighing Positive and Negative Effects on
Health and Well-Being. Curr Dir Psychol Sci, 24(1), 45-51.
doi:10.1177/0963721414551364.
Roth, D.L., Fredman, L., & Haley, W.E. (2015). Informal Caregiving and Its Impact on Health:
A Reappraisal From Population-Based Studies. The Gerontologist 55(2): 309-319.
Russell, R. 2001. “In sickness and in health A qualitative study of elderly men who care for
wives with dementia.” Journal of Aging Studies, 15: 351-367.
Ryder, N.B. (1965) The Cohort as a Concept in the Study of Social Change. American
Sociological Review 30(6): 843-861.
Schulz, R., Aranda, M., Beane, S., Czaja, S., Duke, B., Feder, J., & Hinton, L. (2016). Families
caring for an aging America.
Schulz R, Beach SR. (1999). Caregiving as a Risk Factor for Mortality The Caregiver Health
Effects Study. JAMA.1999;282(23):2215–2219. doi:10.1001/jama.282.23.2215.
Schulz, R., O Brien, A., Bookwala, J., & Fleissner, K. (1995). Psychiatric and physical morbidity
effects of dementia caregiving: Prevalence, correlates, and causes. The
Gerontologist, 35(6), 771.
Schuster, T. L., Kessler, R. C., & Aseltine, R. H., Jr. (1990). Supportive interactions, negative
interactions, and depressed mood. Am J Community Psychol, 18(3), 423-438.
doi:10.1007/BF00938116.
Shaw, W. S., Patterson, T. L., Ziegler, M. G., Dimsdale, J. E., Semple, S. J., & Grant, I. (1999).
Accelerated risk of hypertensive blood pressure recordings among alzheimer caregivers.
Journal of Psychosomatic Research, 46(3), 215-227. doi:https://doi.org/10.1016/S0022-
3999(98)00084-1.
Semiatin, A., & O’Connor, M. (2012). The relationship between self-efficacy and positive
aspects of caregiving in Alzheimer's disease caregivers. Aging & Mental Health, 16(6),
683-688.
Sidani, S., & Braden, C. J. (2011). Design, evaluation, and translation of nursing interventions.
John Wiley & Sons.
Solomon, D. N., Hansen, L., & Baggs, J. G. (2018). It's All About the Relationship: Cognitively
Intact Mother-Daughter Care Dyads in Hospice at Home. Gerontologist, 58(4), 625-634.
doi:10.1093/geront/gnw263.
Sonnega,A., Faul, J., Ofstedal, M., Langa, K., Phillips, J., Weir, D. (2014). Cohort Profile: the
Health and Retirement Study (HRS), International Journal of Epidemiology, Volume 43,
Issue 2, April 2014, Pages 576–585, https://doi.org/10.1093/ije/dyu067.

114

Thoits, p. (2011). Mechanisms Linking Social Ties and Support to Physical and Mental Health.
Journal of Health and Social Behavior, 52(2).
doi:https://doi.org/10.1177/0022146510395592.
TransAmerica Institute. (2017, September). The Many Faces of Caregivers: A Close-Up Look at
Caregiving and Its Impacts. Retrieved online at:
https://www.transamericainstitute.org/docs/default-source/caregivers-research/the-many-
faces-of-caregivers-research-report-2017.pdf.
Uchino, B., Bowen, K., Kent de Grey, R., Mikel, J., & Fisher, E. (2018). Social Support and
Physical Health: Models, Mechanisms, and Opportunities. In E. e. a. Fisher (Ed.),
Principles and Concepts of Behavioral Medicine. New York, NY: Springer.
Umberson, D., Williams, K., Powers, D. A., Liu, H., & Needham, B. (2006). You make me sick:
marital quality and health over the life course. J Health Soc Behav, 47(1), 1-16.
doi:10.1177/002214650604700101.
Vasileiou, K., Barnett, J., Barreto, M., Vines, J., Atkinson, M., Lawson, S., & Wilson, M. (2017).
Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative
Investigation. Frontiers in Psychology 8(585): 1-11.
Venn, S., Davidson, K., Arber, S. (2011). “Gender and Aging” in Handbook of Sociology of
Aging, V.L. Bengston, M. Silverstein, N.M. Putney, and D. Gans, Eds., Chapter 5.
Vincent, G.K., & Velkoff, V.A. (2010). The Next Four Decades: The Older Population in the
United States: 2010 to 2050. United States, Washington D.C.: U.S. Census Bureau.
Retrieved from https://www.census.gov/prod/2010pubs/p25-1138.pdf.
Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical
health? A metaanalysis. Psychological Bulletin, 129 (6), 946–972. doi:10.1037/0033-
2909.129.6.946.
Walen, H., & Lachman, M. (2000). Social support and strain from partner, family, and friends:
Costs and benefits for men and women in adulthood. Journal of Social and Personal
Relationships, 17, 5-3-. doi:10.1177/0265407500171001.
Williamson, G. M., Martin-Cook, K., Weiner, M. F., Svetlik, D. A., Saine, K., Hynan, L. S., . . .
Schulz, R. (2005). Caregiver resentment: Explaining why care recipients exhibit problem
behavior. Rehabilitation Psychology, 50(3), 215-223. doi:10.1037/0090-5550.50.3.215.
Williamson, G. M., & Shaffer, D. R. (2001). Relationship quality and potentially harmful
behaviors by spousal caregivers: How we were then, how we are now. Psychology and
Aging, 16(2), 217-226. doi:https://doi.org/10.1037/0882-7974.16.2.217.
Xu, T., Zhu, G., and Han, S. (2017). Study of Zero-Inflated Regression Models in a Large-Scale
Population Survey of Sub-Health Status and Its Influencing Factors. Chinese Medical
Sciences 32(4): 218-225.

115

Zarit, S., & Edwards, A. (2008). Handbook of the Clinical Psychology of Ageing. In B. Wood &
L. Clare (Eds.), (2 ed.). Hoboken, NJ: John Wiley & Sons.
Zarit, S. H., K. Kim, E. E. Femia, D. M. Almeida, and L. C. Klein. (2013). The effects of adult
day services on family caregivers’ daily stress, affect, and health: Outcomes from the
Daily Stress and Health (DaSH) study. The Gerontologist 54(4):570-579.
Zarit, S.H., Todd, P.A., & Zarit, J.M. (1986). Subjective Burden of Husbands and Wives as
Caregivers: A Longitudinal Study. The Gerontologist 26(3):260-266.

Abstract (if available)

Abstract This dissertation sought to provide an overview of informal caregiving in the United States through detailed examination of generational differences and coping strategies employed by caregivers to address strain in their role. First, a demographic overview of family caregivers is presented using nationally representative Centers for Disease Control’s Behavioral Risk Factor Surveillance System (BRFSS) survey data from 2015-2017. Approximately 1 in 5 adults provided care to a friend or loved one in the past 30 days. Next, a negative binomial regression was conducted to explore differences in mental health outcomes across generational cohorts of family caregivers (N = 50,745). Although previous studies have addressed the effects of caregiving on caregivers’ mental health, research has not examined similarities and differences among generational cohorts of caregivers of older adults. Results showed that Millennial caregivers have an incidence rate ratio of 1.22 times more self-reported days of “stress, depression, and/or problems with emotions” compared to Generation X caregivers (p<0.01)

Linked assets

University of Southern California Dissertations and Theses

Conceptually similar

PDF

New directions for family caregiver interventions

PDF

Is stress exposure enough? Race/ethnic differences in the exposure and appraisal of chronic stressors among older adults

PDF

Life course implications of adverse childhood experiences: impacts on elder mistreatment, subjective cognitive decline, and caregivers' health

PDF

What is success? an exploration of person-centered intervention of complex elder mistreatment

PDF

Developing a better understanding of elder abuse multidisciplinary teams: addressing gaps for research, policy, and practice

PDF

The effects of wisdom-related personality traits on caregivers’ health: an application of the resilience model

PDF

Lifting up ourselves by lifting up others: examining cognitive-affective states linking generativity to well-being

PDF

The economic security of an aging minority population: a profile of Latino baby boomers to inform future retirees

PDF

Internet communication use, psychological functioning and social connectedness at older ages

PDF

Residential care in Los Angeles: policy and planning for an aging population

PDF

Investigating the effectiveness of a social work intervention on reducing hospital readmissions among older adults

PDF

Thinking generatively versus acting generatively: exploring the associations of generative self-concept and generative activity with cognitive function among older adults

PDF

Social determinants of physiological health and mortality in China

PDF

Forensic markers of physical elder abuse in medical and community contexts: implications for criminal justice interventions

PDF

Age integration in late life: sociodemographic & psychosocial correlates of intergenerational-only, peer-only, and age-integrated social networks

PDF

Estimating survival in the face of pain: evidence from the health and retirement study

PDF

Management of the multi-generational workforce in state government

PDF

Self-perceptions of Aging in the Context of Neighborhood and Their Interplay in Late-life Cognitive Health

PDF

Air pollution neurotoxicity throughout the lifespan: studies on the mechanism of toxicity and interactions with effects of sex and genetic background

PDF

A biodemographic approach to understanding sociodemographic disparities in kidney functioning on three dimensions: individual, population, and cross-national

Asset Metadata

Creator Rath, Laura Porter Giles (author)

Core Title Family caregiver well-being: generational differences and coping strategies

School Leonard Davis School of Gerontology

Degree Doctor of Philosophy

Degree Program Gerontology

Publication Date 08/06/2020

Defense Date 08/05/2020

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

Tag caregiving,caregiving-informal,coping strategies,family caregivers,generational cohort,Mental Health,OAI-PMH Harvest,older persons

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Wilber, Kathleen (committee chair), Ailshire, Jennifer (committee member), Gassoumis, Zach (committee member)

Creator Email laura.rath@aol.com,lrath@archstone.org

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c89-359374

Unique identifier UC11666572

Identifier etd-RathLauraP-8892.pdf (filename),usctheses-c89-359374 (legacy record id)

Legacy Identifier etd-RathLauraP-8892.pdf

Dmrecord 359374

Document Type Dissertation

Rights Rath, Laura Porter Giles

Type texts

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

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

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA