Close
About
FAQ
Home
Collections
Login
USC Login
Register
0
Selected
Invert selection
Deselect all
Deselect all
Click here to refresh results
Click here to refresh results
USC
/
Digital Library
/
University of Southern California Dissertations and Theses
/
The dollars and sense of caregiving: exploring the financial financial realities of providing informal care to an older adult
(USC Thesis Other)
The dollars and sense of caregiving: exploring the financial financial realities of providing informal care to an older adult
PDF
Download
Share
Open document
Flip pages
Contact Us
Contact Us
Copy asset link
Request this asset
Transcript (if available)
Content
2024 Susanna Mage
THE DOLLARS AND SENSE OF CAREGIVING:
EXPLORING THE FINANCIAL REALITIES OF PROVIDING INFORMAL CARE TO AN
OLDER ADULT
by
Susanna Mage
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 2024
ii
DEDICATION
To my Mother, whom I care for.
To my Father, whom I cared for.
iii
ACKNOWLEDGEMENTS
I want to thank and acknowledge my mentors at the University of Southern California—
Kate Wilber and Donna Benton, and my mentor, Kylie Meyer, at Case Western Reserve
University in Ohio. I would also like to thank Michael Hurlburt and Francesca Falzarano. I
appreciate their guidance and support, both personally and professionally. Thank you to Michael
Hurlbut and Reginald Tucker-Seeley, who have provided invaluable methodological, policy, and
career advice throughout my Ph.D. program. Thank you to my lab mates, past and present: Liz
Avent, Halley Gallo, Lilly Estenson, Kelly Ann Marnfeldt, Laura Rath, Julia Martinez, Sheila
Salinas Navarro, Mengzhao Yan, and Eleanor Batista-Malat, and my peer mentors: Vale
Cardenas and Meki Singleton. Thank you to my fellow Millennial caregivers who have been a
part of my peer-led mentor support group for three years: Cortni, Josh, Shai, and Tessa. I
especially want to thank my life mentor, my uncle John Mage, for helping me get to this point in
my career. I would lastly like to thank Dennis Saldua for all his love and continued support.
iv
TABLE OF CONTENTS
DEDICATION................................................................................................................................ ii
ACKNOWLEDGEMENTS...........................................................................................................iii
LIST OF TABLES.......................................................................................................................... x
ABSTRACT................................................................................................................................... xi
CHAPTER I: INTRODUCTION.................................................................................................... 1
Caregiving in the United States............................................................................................. 1
Caregiver Burden .................................................................................................................. 4
Dementia Caregiving............................................................................................................. 6
Financial Burden of Caregiving ............................................................................................ 9
Health Implications of Financial Strain .............................................................................. 12
Disparities in Financial Burden........................................................................................... 12
Latino Caregivers....................................................................................................... 13
Material-Psychosocial-Behavioral Aspects of Financial Hardship..................................... 15
Understanding the Financial Hardship of Caregiving......................................................... 16
The Current Study ............................................................................................................... 17
Dissertation Aims ...................................................................................................... 18
CHAPTER II: THE IMPACT OF SPOUSAL CAREGIVING ON FINANCIAL
WELL-BEING: A CROSS-SECTIONAL AND LONGITUDINAL ANALYSIS...................... 20
Overview ............................................................................................................................. 20
Introduction ......................................................................................................................... 20
The Financial Burden of Caregiving ......................................................................... 21
Subjective Financial Health....................................................................................... 23
The Present Study...................................................................................................... 25
Methods............................................................................................................................... 27
v
Data............................................................................................................................ 27
Variables.................................................................................................................... 28
Spousal Caregiving. ......................................................................................... 28
Caregiving Status. ............................................................................................ 28
Subjective Financial Strain. ............................................................................. 28
Covariates.................................................................................................................. 29
Analysis ..................................................................................................................... 30
Results................................................................................................................................. 30
Sample Characteristics............................................................................................... 30
Prevalence of Financial Strain According to Caregiver Status ................................. 31
Odds of Experiencing Financial Strain According to Caregiver Status.................... 32
Discussion ........................................................................................................................... 33
Future Research ......................................................................................................... 37
Limitations................................................................................................................. 38
Conclusion........................................................................................................................... 39
CHAPTER III: LATINO FAMILY CAREGIVERS’ EXPERIENCES
COVERING OUT-OF-POCKET COSTS WHEN CARING FOR SOMEONE
LIVING WITH DEMENTIA ....................................................................................................... 46
Overview ............................................................................................................................. 46
Introduction ......................................................................................................................... 47
The Current Study...................................................................................................... 49
Methods............................................................................................................................... 51
Study Design.............................................................................................................. 51
Data Collection .......................................................................................................... 51
Interview Guide................................................................................................ 51
Eligibility. ........................................................................................................ 52
vi
Participant Recruitment.................................................................................... 52
Interviews......................................................................................................... 52
Data Analysis............................................................................................................. 53
Findings............................................................................................................................... 54
Sample ....................................................................................................................... 54
Types of Out-of-Pocket Costs ................................................................................... 54
Themes................................................................................................................................ 55
Theme 1: Making Ends Meet .................................................................................... 55
Subtheme 1: The Cumulative Costs of Day-to-Day Expenses. ....................... 55
Subtheme 2: Sacrificing Financial Well-Being to Meet Care
Recipient Needs. .............................................................................................. 56
Theme 2: The Psychological Impact of Caregiving Costs ........................................ 57
Subtheme 1: Perceived Effect of Caregiving Costs on Mental
and Physical Health.......................................................................................... 58
Subtheme 2: Worries About the Future. .......................................................... 58
Subtheme 3: Pressure of Social Role Expectations.......................................... 59
Theme 3: Frustration with Accessing Resources....................................................... 60
Subtheme 1: Disappointment with Identified Resources................................. 60
Subtheme 2: Not Knowing that Resources Exist or How to
Access. ............................................................................................................. 61
Subtheme 3: Family Could Not Be Relied Upon to Help Cover
Care Costs. ....................................................................................................... 62
Discussion ........................................................................................................................... 63
Implications ............................................................................................................... 64
Individual Intervention..................................................................................... 64
Policy Intervention........................................................................................... 65
Limitations................................................................................................................. 65
vii
Future Research ......................................................................................................... 66
Conclusion........................................................................................................................... 66
RESULTS FROM SATISFACTION SURVEY AND QUALITATIVE
INTERVIEWS .............................................................................................................................. 74
Overview ............................................................................................................................. 74
Introduction ......................................................................................................................... 75
Overview.................................................................................................................... 75
Financial Burden and Latino Caregivers................................................................... 75
Financial Strain Interventions for Caregivers............................................................ 77
The CONFIDENCE Intervention .............................................................................. 78
Evaluating Acceptability ........................................................................................... 79
The Present Study...................................................................................................... 81
Methods............................................................................................................................... 82
Study Design.............................................................................................................. 82
Data Collection .......................................................................................................... 82
Eligibility and Recruitment.............................................................................. 82
Interview Guide................................................................................................ 83
Interviews......................................................................................................... 83
Satisfaction Survey. ......................................................................................... 83
Data Analysis............................................................................................................. 84
Ethical Considerations......................................................................................................... 84
Narrative Findings............................................................................................................... 85
Sample Characteristics............................................................................................... 85
Thematic Insights....................................................................................................... 85
Theme 1: The Perceived Need for Financial Intervention............................... 85
Theme 2: Perceived Effectiveness of the Intervention. ................................... 86
viii
Theme 3: Positive Responses to Participation. ................................................ 91
Theme 4: Recommendations to Improve the Intervention............................... 93
Satisfaction Survey Results................................................................................................. 95
Sample ....................................................................................................................... 95
Results........................................................................................................................ 95
Discussion ........................................................................................................................... 96
Overview.................................................................................................................... 96
How Findings Align with the Literature.................................................................... 96
Financial Interventions for Caregivers............................................................. 96
Psychoeducation Interventions for Caregivers................................................. 97
Culturally Tailored Interventions for Latinos. ................................................. 98
Improving Future Intervention Delivery ................................................................. 100
Limitations............................................................................................................... 100
Conclusions....................................................................................................................... 101
CHAPTER V: CONCLUSION................................................................................................... 108
Overview ........................................................................................................................... 109
Policies Supporting Caregivers......................................................................................... 113
Addressing Policy Gaps in the Caregiving Field..................................................... 113
Identifying Barriers and Needs to Supporting Caregivers....................................... 115
Using Data to Elevate Caregiving as a Policy Problem .......................................... 117
Identifying Caregiving as a Problem. ............................................................ 118
Highlighting the Cost of Doing Nothing........................................................ 119
Current U.S. Policies Supporting Caregivers.......................................................... 120
Older Americans Act of 1965. ....................................................................... 120
Paid Family Leave.......................................................................................... 121
ix
Medicaid......................................................................................................... 122
Medicare Advantage Primarily Health-Related Supplemental
Benefits. ......................................................................................................... 123
Implications & Future Research........................................................................................ 128
REFERENCES ........................................................................................................................... 133
APPENDIX A. THE SEVEN COMPONENT CONSTRUCTS OF SEKHON’S
THEORETICAL FRAMEWORK OF ACCEPTABILITY ....................................................... 156
APPENDIX B. INTERVIEW GUIDE ....................................................................................... 158
x
LIST OF TABLES
Table 2.1 Characteristics of Sample Using Baseline Data (Wave 1) ........................................... 41
Table 2.2 Satisfaction with Present Financial Situation Across Spousal Caregiver
Status. Wave 1. N = 5,725 ............................................................................................................ 42
Table 2.3 Ability to Meet Monthly Household Bills Across Spousal Caregiver
Status in Wave 1. N = 5,739 ......................................................................................................... 43
Table 2.4 Odds of Satisfaction with Present Financial Situation in Wave 2 by
Spousal Caregiver Status in Wave 1 Compared to Non-Caregivers. N = 3,438........................... 44
Table 2.5 Odds of Being Able to Pay Monthly Household Bills in Wave 2 by
Spousal Caregiver Status in Wave 1 Compared to Non-Caregivers. N = 3,411........................... 45
Table 3.1 Abbreviated Interview Guide........................................................................................ 68
Table 3.2 Participant Demographics............................................................................................. 69
Table 3.3 CONFIDENCE Interviews Codebook.......................................................................... 70
Table 3.4 Application of Material-Psychological-Behavioral Model to Latino
Dementia Caregivers’ Out-of-Pocket Costs.................................................................................. 71
Table 4.1 Satisfaction Survey Questions Related to the Seven Domains in
Sekhon’s Theoretical Framework of Acceptability (Sekhon et al., 2017).................................. 103
Table 4.2 Codebook for Qualitative Analysis............................................................................. 104
Table 4.3 Qualitative Interview Participant Demographics (N = 14)......................................... 105
Table 4.4 Satisfaction Survey Participant Demographics........................................................... 106
xi
ABSTRACT
Caring for an older adult can significantly impact a caregiver’s financial stability,
potentially leading to future economic insecurity and negative health consequences. The
financial burden of caregiving has received less research attention than physical and emotional
costs. Financial strain affects mental and physical health and is unequally distributed across
caregivers. This is especially true for caregivers who are spouses and those from marginalized
ethnic groups, such as the Latino community. Spousal caregivers report more financial strain
compared to non-spousal caregivers, and Latino caregivers spend nearly twice as much of their
annual household income on caregiving expenses compared to non-Latino caregivers.
This dissertation comprises three empirical studies that investigate and aim to address
various aspects of the financial hardship of caregiving for an older adult. The first study,
included in Chapter 2, examines the association between spousal caregiving and perceived
financial well-being, measured by satisfaction with their current financial situation and the
ability to meet monthly household expenses. Data from the 2008-2018 Health and Retirement
Study (HRS; HRS, 2023) is examined over a subsequent four-year period. In addition to looking
at spousal caregiving, we further investigate the relationship between caregiver status (i.e., those
‘new’ to the caregiving role or those who are ‘ongoing’ caregivers) and subjective financial
strain. A higher proportion of caregivers, compared to non-caregivers, reported not being
satisfied with their current financial situation (24% vs. 19%) and not being able to pay monthly
expenses (39% vs. 29%). Bivariate results indicated a statistically significant difference for both
variables when comparing caregivers and non-caregivers (p-value = 0.008 and p-value <0.001,
respectively). Lagged dependent variable regression models demonstrate that spousal caregivers
generally reported increased perceived financial strain in Wave 2 but that these associations were
xii
insignificant. The results presented in Chapter 2 underscore the economic challenges spousal
caregivers face due to their caregiving responsibilities.
The second study, Chapter 3, analyzes semi-structured, individual Zoom-based
interviews with 14 Latino caregivers of persons living with dementia in California or Texas. It
investigates the lived experience and financial challenges these caregivers face while providing
care, as well as factors affecting access to resources and support in this population. Findings
reveal three themes: daily needs and costs, psychological distress caused by financial issues, and
stressful barriers to accessing family and societal support. Further, interviews revealed how
Latino culture may influence spending patterns and cost management. Findings suggest that
Latino families’ preference for caring for a family member in the home may be met with
financial disadvantage due to the high out-of-pocket costs of care and lack of policy support. A
better understanding of the factors contributing to high costs for Latino caregivers and how these
costs affect caregivers informs approaches at both the individual- and policy levels and allows
for the development of culturally relevant interventions to help Latino families lower caregiving
costs. Chapter 3 was previously published in The Gerontologist (2024), titled “I Lay Awake at
Night”: Latino Family Caregivers’ Experiences Covering Out-of-Pocket Costs When Caring for
Someone Living with Dementia.
The third study, Chapter 4, uses a multi-method approach guided by Sekhon’s
Theoretical Framework of Acceptability (2017) to examine the retrospective acceptability of a
psychoeducational intervention to lower out-of-pocket costs for Latino caregivers of persons
living with dementia. This study analyzes semi-structured, individual Zoom-based interviews
with 14 Latino caregivers of persons living with dementia who had participated in a 5-week,
web-based financial intervention, as well as the results of satisfaction surveys that 21 participants
xiii
completed. Qualitative analysis reveals four themes: perceived need for financial intervention,
perceived intervention effectiveness, positive responses to participation, and recommendations to
improve the intervention. Caregivers appreciated the self-paced format and the group setting,
which allowed for interaction and learning from fellow caregivers. Survey results indicated high
satisfaction, with participants praising the program’s trustworthy and relevant content. The
analysis shows that caregivers viewed the intervention positively and reported benefits in
managing finances and financial stress, although some noted challenges, including time
constraints and scheduling conflicts. Considering the significant economic burdens faced by
Latino caregivers, it is vital to develop and support interventions tailored to their unique needs.
1
CHAPTER I: INTRODUCTION
Caregiving in the United States
Family caregivers—defined by the RAISE Family Caregivers Act (U.S. Congress, 2018)
as any unpaid “adult family member or other individual who has a significant relationship with,
and who provides a broad range of assistance to, an individual with a chronic or other health
condition, disability or functional limitation”—are essential to the health and well-being of
millions of Americans who rely on them for care. In the United States (U.S.), family or
“informal” caregivers provide approximately 36 billion hours of unpaid care annually. With an
estimated economic value of more than $600 billion (AARP, 2023), care provided by family
caregivers displaces costs of long-term services and supports (LTSS) that would otherwise fall
upon publicly funded programs, as well as out-of-pocket expenses borne by individuals and their
families (Reinhard et al., 2023). In the U.S., the need for support from family caregivers in all 50
states has and will continue to increase over the coming years (Spillman et al., 2020;
Alzheimer’s Association, 2021).
Family caregivers offer continuous and largely unpaid assistance to those who cannot
manage their lives independently. They are distinct from paraprofessional home health aides,
who are considered “formal caregivers, have training requirements, and are paid for their
services (Roth et al., 2015). In this dissertation, the focus is on family caregivers, who are
referred to as caregivers throughout. An estimated 42 million caregivers currently provide care to
adults (age 50 or older) in the U.S. (NAC & AARP, 2020). These caregivers provide needed
physical, social, and emotional support to address various needs resulting from chronic health
conditions, disabilities, and/or functional impairments. As the older adult population continues to
increase and many prefer to age in place, the demand for caregivers will increase in parallel.
2
Caregivers provide 83% of the assistance received by older adults in the U.S. (Friedman et al.,
2015). On average, the age of those receiving care from caregivers is 68.9 (NAC & AARP,
2020). Estes (2014) notes that the U.S. has been “free riding” on the backs of caregivers,
disproportionately females and people of color. Nearly all LTSS policies in the U.S. depend on
informal caregivers, working without pay or benefits, to do the “heavy lifting.” When caregivers
in this space are paid, they receive low wages and often do not receive benefits. As the need for
caregiving and the required hours of care increase, so will the economic value, and caregivers
should receive fair compensation (Alzheimer’s Association, 2021).
Caregivers and caregiving arrangements are as diverse as the people who provide care.
They can be spouses, partners, family of choice, adult children, siblings, friends, and across
generational cohorts. They represent diverse racial and ethnic group and live in communities
nationwide. Some live with the care recipient, some live in a neighboring region, and some live
in a different state. Most caregivers (61%) are female. Their average age is 49, but nearly half
(48%) are between 18 and 39, and one in four belong to the Millennial generation, which
includes any person born between the years of 1981 and 1996 (Dimock, 2019). About one-third
(34%) are 65 and older. Caregivers in the U.S. reflect the racial and ethnic diversity of the
general population. According to data from the National Alliance for Caregiving (NAC) and
AARP (2020), 61% of caregivers are non-Latino White, 17% are Latino/Latina, 14% are African
American, 5% are Asian American and Pacific Islander (AAPI), and 3% identify as other races.
These statistics are comparable to the racial distribution of the U.S. general population. As per
the most recent data from the U.S. Census Bureau (2021), the population is approximately 59.7%
non-Latino White, 18.5% Latino/Latina, 12.4% African American, 7.1% AAPI, and 6.2% other
races.
3
Caregivers help with activities of daily living (ADLs) and instrumental activities of daily
living (IADLs) and frequently perform complex medical tasks, often without training or
education. They assist with various tasks and activities of everyday life that can be mentally and
physically challenging. ADLs include eating, bathing, dressing, transferring, and toileting.
IADLs involve using the telephone, managing medications, shopping, preparing meals,
transportation, paying bills/managing finances, and housework. A growing number of caregivers
(58%) also perform complex medical/nursing tasks, such as administering medications
(including injections), wound care, and managing medical equipment. Often, they do not have a
choice about performing such clinical tasks (Almgren, 2018; NAC & AARP, 2020). In fact, over
half (53%) of caregivers feel they have no choice in taking on the responsibility to provide care
for their care recipient (NAC & AARP, 2020).
Changes in family structure, geographic dispersions of families, delayed childbearing,
increased divorce rates, lower marriage rates, and the increase of women in the workforce all
reduce the number of available caregivers in the U.S. A consequence of the shifting
demographics and concurrent social trends is a reduction in the supply of available caregivers at
the same time as the demand for such care increases (Levitsky, 2014; Roth et al., 2015). By
2034, for the first time in the U.S., the proportion of older adults aged 65 and older is predicted
to outnumber the proportion of children under 18 (U.S. Census Bureau, 2018; Vespa, 2019).
Based on various social and economic trends described above, fewer spouses and adult children
will be available to provide care at home. The widening gap between those available to provide
care and those who need it will unquestionably lead to greater demand for available caregivers,
including older adults transferring care or financial responsibilities to a family caregiver and
greater reliance on paid help (Feinberg & Spillman, 2019).
4
Caregiver Burden
Since the 1980s, studies have shown that caregiving and its long-term demands can lead
to emotional, social, financial, physical, and spiritual strain (Cantor, 1983; Zarit et al., 1986).
This phenomenon is widely characterized in the literature as ‘caregiver burden’ (Zarit et al.,
1986). It refers to the physical, emotional, and psychological stress experienced by individuals
who care for another person living with a chronic illness, disability, or age-related condition. It
encompasses the challenges, strain, and negative impacts of caregiving on the caregiver’s wellbeing. The demands of caregiving, including providing personal care, managing medications,
coordinating healthcare appointments, and addressing the emotional needs of the care recipient,
can lead to heightened levels of burden. Several factors contribute to caregiver burden, including
the intensity and complexity of care tasks, the duration of caregiving, the availability of support
networks, and the caregiver’s physical and mental health.
Compared to non-caregivers, research indicates that caregivers experience more adverse
effects on five critical aspects of their health: depression, stress, subjective well-being, selfefficacy, and physical health (Pinquart & Sörensen, 2003). Numerous studies found within the
caregiver literature confirm that the challenging responsibility of caregiving is significantly
associated with worse physical functioning, fewer social relationships, and increased depression,
anxiety, loneliness, and social isolation (Kim & Schulz, 2008; Roth et al., 2009; Musich et al.,
2016; Vasileiou et al., 2017). Similarly, a meta-analysis revealed that compared to noncaregiving controls, older adult spousal caregivers (aged 50 and over) experienced more
cognitive functional difficulties, strain, distress, loneliness, depression, anxiety, and overall
poorer mental health (Lavela & Ather, 2010). Several factors, like gender and cultural
background, impact caregiver burden (Cohen et al., 2019; Willert & Minnotte, 2021).
5
Nearly half of the caregivers in the U.S. do not get outside help, either from external
resources or support from friends or family (NAC & AARP, 2020). Caregivers spend, on
average, approximately 24 hours per week providing care. For those who live with their care
recipient, this number jumps to 37.4 hours per week (NAC & AARP, 2020). Unsurprisingly,
caregivers are more susceptible to psychological distress, social isolation, and financial hardship
than non-caregivers (Pinquart & Sörensen, 2003). To meet the responsibilities required to be a
caregiver, those in the role may sacrifice career development, personal relationships, and/or
financial well-being. At the same time, caregivers who experience burden may avoid seeking
respite due to their perceived duty to the person they are caring for. Caregivers who do seek
assistance for daily responsibilities usually do so after reaching a rock-bottom point in their own
mental or physical health. Those facing high levels of burden and role conflict are more likely to
place their care recipient in a long-term care facility at an earlier stage of the disease than would
otherwise necessitate (Spillman & Long, 2009).
While there are positive benefits of caregiving (Hogstel et al., 2006; Zarit, 2012), to best
support the needs of caregivers, we must better understand the challenges and adverse outcomes
of caregiving that can be addressed through resources, interventions, and policy. Caregiver
burden impacts the caregiver’s well-being and can also affect the care recipient. When caregivers
experience high levels of burden, they may have difficulty providing optimal care, leading to
potentially harmful outcomes for the care recipient’s health and quality of life (Schulz et al.,
2020). Caregiver burden can also lead to a facility or nursing home placement if the caregiver
can no longer manage their role (Spillman & Long, 2009).
Caregivers indicate more quality-of-life issues than individuals not in caregiving roles
(Roth et al., 2009). Significant differences between caregivers and non-caregivers have been
6
found regarding their physical and mental health (Pinquart & Sörensen, 2003; Roth et al., 2009;
Lavela & Ather, 2010). For example, major depression is a prevalent mental illness, impacting
over 8% (21 million) of American adults annually (NIMH, 2020), and according to a recent
national survey, approximately 5% of adults regularly have feelings of depression either daily or
weekly (Norris, et al., 2023). Among caregivers, however, the prevalence of depression
symptoms is more than double (20%) (FCA, 2024). Commonly, rates of depression among
caregivers increase with the severity of the illness of the person being cared for, with those
caring for persons living with dementia having the highest rates (Beeson, 2003; Pinquart &
Sörensen, 2003). Conversely, caregivers who do not perceive tension coming from their role
report enjoying a better quality of life than non-caregivers (Roth et al., 2009).
Dementia Caregiving
The number of persons living with dementia being cared for by caregivers in communitybased settings is growing (McCabe et al., 2016). As of 2023, Alzheimer’s disease and related
dementias (ADRD) affect an estimated 6.7 million people in the U.S. aged 65 and older
(Alzheimer’s Association, 2023). 80% of those individuals receive care in their homes with the
help of a caregiver (NAC & AARP, 2020). Over 11 million caregivers provide care for persons
living with dementia in the U.S. (Alzheimer’s Association, 2023). These caregivers suffer worse
physical, mental, and emotional health when compared to caregivers of persons without
dementia and non-caregivers (Pinquart & Sörensen, 2003; Beeson, 2003; Riffin et al., 2019).
Dementia primarily affects older adults, with the risk increasing with age. It is a broad
term to describe symptoms associated with a decline in cognitive abilities and memory that
interferes with daily functioning, caused by diseases that damage the brain. Diseases under the
umbrella of dementia include Alzheimer’s disease, Vascular Dementia, Lewy Body dementia,
Frontotemporal dementia, and mixed dementia (World Health Organization, 2017; National
7
Institute on Aging, n.d.). ADRD are progressive, fatal illnesses rapidly becoming one of the most
common conditions affecting the older population. Persons living with dementia experience
several impairments in various cognitive domains: memory, attention, language, problemsolving, and executive function. These impairments can significantly impact a person’s ability to
live independently and perform routine daily activities (Alzheimer’s Association, 2021).
Alzheimer’s disease is the most common form of dementia, making up 60-70% of all
dementia cases. Alzheimer’s disease is believed to be linked to atypical protein clumps, called
amyloid plaques, building in and around brain cells, and the protean tau, which causes tangles to
build up in the brain, harming and killing brain cells. Older adults with Alzheimer’s disease
frequently exhibit memory impairments, disorientation, difficulties in verbal communication,
mood fluctuations, and challenges in performing complex tasks (WHO, 2017). Approximately
10% of all dementia cases are categorized as Vascular dementia, making this the second most
common kind of dementia. Vascular dementia, caused by reduced blood flow to the brain, often
due to strokes or mini-strokes, progresses in a stepwise manner, with symptoms worsening
abruptly following each stroke or mini-stroke (CDC, 2019). It may manifest with various
symptoms, such as memory loss, difficulty concentrating, confusion, and issues with planning
and decision-making. Other symptoms may include depression, anxiety, personality changes,
difficulty walking, poor balance, and speech difficulties. Lewy Body dementia is a less common
type of dementia, making up about 5-10% of cases. It’s caused by unusual protein deposits,
called Lewy bodies, in the brain. People living with Lewy Body dementia might have fluctuating
levels of alertness, hallucinations, difficulty sleeping, move slowly or be stiff, and react badly to
certain medications (McKeith, 2004; CDC, 2019). The rarest type of dementia is Frontotemporal
dementia, comprising about 3% of total dementia cases (Lashley et al., 2015). It results from
8
parts of the brain that control personality, behavior, talking, and social skills, called the frontal
and temporal lobes, starting to break down. Symptoms of Frontotemporal dementia include
changes in behavior and one’s ability to communicate with others (Lashley et al., 2015; Hogan et
al., 2016). There are no cures for ADRD, but there are treatments that can help control the
symptoms and make life better for those living with dementia and the people taking care of them
(WHO, 2017).
ADRD are exceedingly challenging age-related illnesses for caregivers to manage
(Sorensen et al., 2006; Schulz & Martire, 2004; Huang et al., 2012). Caregivers often lack the
professional knowledge to meet the needs of the people they care for who are living with
dementia. Most have limited care-related training to learn how to perform caregiving tasks,
leading to a greater care-induced burden (Huang et al., 2009) and greater consequences to their
physical and mental well-being (Schulz & Martire, 2004; Cooper et al., 2007). Caregivers of
persons living with dementia experience more stress and negative impacts on health,
employment, income, and financial security than caregivers who do not care for someone with
dementia (Beeson, 2003; Kim & Schulz, 2008; Roth et al., 2009). Caring for someone with
dementia can become increasingly difficult and complex as the disease progresses and requires
more intense care. The mental and functional decline that frequently comes with dementia
progression usually requires continuous supervision and support, and caregivers may need to
devote more time and effort to ensure the safety and well-being of the person with dementia.
Caregivers assisting those living with ADRD, on average, spend more hours per month
providing care than those caring for older adults without cognitive impairment (Jutkowitz et al.,
2020). They often report difficulties managing behavioral symptoms and daily tasks, especially
9
as increases in ADL and IADL limitations experienced by the care recipient disproportionally
increase the required care (Jutkowitz et al., 2020; Skufca & Rainville, 2021).
Witnessing the progressive loss of memory, personality changes, and decline in an older
adult’s abilities is distressing. Caregivers commonly encounter feelings of grief, guilt,
frustration, and helplessness (Alzheimer’s Association, 2021; National Institute on Aging, 2023).
Caregiving responsibilities can limit caregivers’ ability to engage in social activities and
maintain relationships. Caregivers of older adults living with ADRD are more likely to
experience social isolation and reduced support networks than those caring for older adults with
other disease indications (Alzheimer’s Association, 2021). Pinquart and Sörensen (2003)
highlight, in their seminal review, that these caregivers also experience higher levels of
depression and more caregiver burden. These findings remain consistent with more recent
reports (Pinquart and Sörensen, 2003).
Financial Burden of Caregiving
Every caregiver has unique needs in managing the financial aspects of caregiving,
including personal and cultural values around what care should look like and, for some,
individual goals related to employment. Financial insecurity can have immediate and long-term
impacts on one’s ability to meet basic needs, career development, generational wealth, and
overall well-being (Templeman et al., 2020). Of the nearly 2% of the GDP covering LTSS,
family caregiving accounts for over one-third (Gruber & McGarry, 2023). Roughly 42 million
caregivers shoulder the weight of providing care for a rapidly growing population of older adults
and persons with disabilities with varying health, mobility, and cognitive-related impairments
(Schulz et al., 2020). Estimates indicate that caregivers provide an average of 24 hours of care
per week and spend roughly 4.5 years in this role, while nearly 30% provide care for five years
or more. Caregivers frequently enter the role unexpectedly, leaving little time to plan, prepare, or
10
receive proper training (Khatutsky & Greene, 2019). Nearly half of all caregivers’ report being
the primary caregivers for their care recipients, undertaking this responsibility without extra help
from either their personal support networks or formal services (NAC & AARP, 2020).
Those who need care have several possible payment sources. These include out-of-pocket
payments or those covered by a caregiver, Medicaid, Medicare, private insurance, long-term care
insurance, and veterans’ benefits. Ninety-two percent of caregivers participate in financial
caregiving, which includes coordinating and contributing to finances (Merrill Lynch & Age
Wave, 2017). On average, caregivers spend $7,242 each year on care-related expenses. Those
caring for a person living with dementia spend more, an average of $8,978 annually (Rainville et
al., 2016; Skufca & Rainville, 2021). The public sector (Medicaid) is the primary funder of
LTSS in the U.S., but only for those low-income Americans who meet at least the federal
eligibility requirements of a household income of 138% of the Federal Poverty Level (FPL);
some states can expand to more than 138% if they choose. However, there are limits on what is
covered by Medicaid, including provisions that require the care recipient to be in a facility or as a
part of a waiver program. For the millions of older adults who require LTSS but fail to meet
Medicaid’s financial and functional criteria, their family members and friends become critical
allies in providing hands-on care and financial support (Reaves & Musumeci, 2015).
Caregiving comes at the risk of jeopardizing one’s financial stability. Risks include
reducing or depleting savings and reductions in workplace availability, leading to reduced
paychecks and reductions in contributions to retirement. Many expenses assumed by caregivers
(e.g., home modifications, medications, and durable medical equipment) are not covered by
Medicare or other private insurance. For those taking care of an older adult with Medicaid
coverage, home-based care can still result in additional out-of-pocket costs for items and services
11
that would only be covered in facility-based care (Reaves & Musumeci, 2015). Many caregivers
cover care expenses with personal savings (Lee et al., 2014). Out-of-pocket costs of care,
including medical care, medications, home modifications, and professional assistance, impact
caregivers’ long-term financial stability, with 22% reporting using personal short-term savings
and 12% using long-term savings to assist with care-related costs (NAC & AARP, 2020). One in
five caregivers struggle to pay their bills on time, and more than one in ten cannot cover basic
expenses, like housing and food (NAC & AARP, 2020).
Older adults living with serious and terminal conditions may require increasingly higher
levels of care, and in the U.S., most of this support comes from caregivers (Ornstein et al., 2017).
Managing end-of-life care can be particularly challenging both interpersonally and financially, as
care needs may increase significantly as one approaches death (Wolf et al., 2007). This period is
fraught with many care decisions that can increase out-of-pocket costs. Compared with nonterminally ill care recipients, older adults approaching the end of their life experience worsening
functional status and require more assistance with ADLs (Ornstein et al., 2017). Preparing for
end-of-life decision-making, including consideration of curative and life-prolonging
interventions versus comfort-focused measures such as hospice, can significantly impact
caregivers’ financial well-being (Garrido et al., 2015; McMahan et al., 2021). Advanced illness
may involve frequent use of medical care, e.g., hospitalizations and emergency department visits
(French et al., 2017), which are associated with greater out-of-pocket costs for patients and their
family members (Marshall et al., 2010; Reid et al., 2022).
In addition to their role as a caregiver, many caregivers balance employment with their
care responsibilities. More than half of working caregivers (53%) have experienced at least one
work-related impact related to caregiving (i.e., taking time off (both paid and unpaid), working
12
different hours; NAC & AARP, 2020). The estimated cost of a caregiver’s forgone wages each
year are $13,188 (Hurd et al., 2013). Lower-income caregivers often experience financial strain
throughout their lifetime due to the costs of caregiving and the accumulation of lost wages over
time. Women ages 50 and older who provide care to a parent lose a lifetime average of $324,000
in wages, pension earnings, and Social Security (Metlife, 2011).
Health Implications of Financial Strain
It is well established that caregiver financial stress negatively correlates with the physical
well-being of the care recipient and can be a forecasting factor for mortality (Semple, 1992;
Tucker-Seeley et al., 2009; Szanton et al., 2016). The financial strain brought on by high care
costs can intensify depressive symptoms, worry, and anxiety and cause worsening physical
health and a lowered quality of life (Andren & Elmstahl, 2007; Pinquart & Sörensen, 2007; Sun
et al., 2009; Savoy et al., 2014; Dijkstra-Kersten et al., 2015; Nam, 2016; French & Vigne, 2019;
Liu et al., 2019). A caregiver experiencing more financial difficulties is more likely to feel role
overload, being overwhelmed, and role captivity, feeling trapped in their responsibilities
(Aneshensel et al., 1993; Liu et al., 2019). Caregiver financial strain also has health implications
for the care receiver. Caregivers who report experiencing financial hardship are less likely to
enroll and engage in treatments for their care recipient (Karlawish et al., 2003). For those
caregivers who do participate, treatment failure is significantly associated with financial hardship
(Rose & Gitlin, 2017). Financial strain is also a predictor of nursing home placement (Spillman
& Long, 2009).
Disparities in Financial Burden
The challenges associated with dementia caregiving become more demanding and
intensive as the care recipient’s needs change throughout the disease. As discussed above,
caregivers assisting persons living with ADRD spend more time and money providing care than
13
those providing care for a person without cognitive impairment (Rainville et al., 2016; Jutkowitz
et al., 2020; Skufca & Rainville, 2021). The total cost of caregiving, including out-of-pocket
costs in addition to all other associated expenses, is much higher for persons living with
dementia—who spend an average of $61,522 for out-of-pocket costs versus $34,068 for older
adults living with other chronic diseases (Kelley et al., 2015). The progressive nature of the
disease and its increased demands underscore a unique financial challenge faced by dementia
caregivers. Younger caregivers with less time to work and build up their financial resources
frequently encounter higher levels of financial strain (NAC & AARP, 2020). Women, African
Americans, and Latinos are more likely to take on a caregiving role compared to men and nonHispanic/Latino whites. Women and caregivers from underserved racial/ethnic groups are
particularly affected by inadequate caregiver support (Kalipeni & Kashen, 2022). Nearly one in
five caregivers report high financial strain because of caregiving, and those who are Black and
Latino report more significant strain. White families spend roughly 14% of their annual earnings
on care provision, while Black and Latino families contribute approximately 34% and 44%,
respectively, of their income on care (AARP, 2021).
Latino Caregivers
Representing nearly 20% of the population, Latinos are the second-largest ethnic group in
the U.S., after White, non-Latino individuals (U.S. Census Bureau, 2021). Approximately 63
million Latinos live in the U.S. (Lopez et al., 2022), and by 2060, this number is expected to
increase to 112 million, comprising 28% of the population (U.S. Census Bureau, 2018).
Compared to other race/ethnic groups, Latinos are two times more likely to suffer from
dementia. By 2060, it is projected that the number of Latinos who live with dementia will
increase by 832% (Alzheimer’s Association, 2019; Wu et al., 2016).
14
When comparing caregivers by race/ethnicity, Latino caregivers have higher out-ofpocket caregiving costs relative to their income than non-Latino caregivers. While the average
caregiver, for example, spends almost 20% of their annual household income on caregiving,
Latino caregivers spend nearly half (Skufca & Rainville, 2021). In addition, Latino caregivers
provide more intensive care than non-Latino caregivers (AARP & NAC, 2020). Although Latino
families of persons living with dementia tend to choose the most affordable healthcare options
available to them and often rely on family caregivers, the total costs these families spend are
growing faster than those of non-Latino families (Wu et al., 2016). The reasons for the higher
out-of-pocket care costs for Latino caregivers have received little research attention and need to
be better understood. Given the high costs of care, financial disadvantages Latino caregivers
already experience, and anticipated growth in Latino families caring for persons living with
dementia, dementia has been described as “the perfect storm” for financial hardship among
Latinos (Wu et al., 2016).
Turner and colleagues (2015) identified the persistent challenge of financial stressors
among Latino caregivers of persons living with dementia, revealing the pervasive challenge of
balancing financial stability with the extensive demands of dementia care. This study highlighted
the conflict between the need for steady employment and the demands of caregiving; many
caregivers were forced to leave dementia-affected loved ones unattended due to work
commitments, leading to potentially unsafe situations, as well as charges of elder neglect.
Additionally, caregivers providing constant, hands-on care noted that their financial
compensation was inadequate, underscoring a mismatch between the intensity of care provided
and the financial support offered (Turner et al., 2015).
15
Material-Psychosocial-Behavioral Aspects of Financial Hardship
The Tucker-Seeley and Thorpe (2019) Material-Psychosocial-Behavioral conceptual
model emphasizes the complex relationships between financial strain and health outcomes. It
recognizes the multidimensional nature of financial stress, encompassing objective and
subjective components, and highlights the importance of social determinants and behavioral
responses in shaping health outcomes. The model provides a framework for understanding and
addressing the health consequences of financial strain and can inform interventions and policies
to mitigate its adverse effects.
An individual’s or family’s economic resources, including income, assets, and financial
stability and security over time, play a significant role in determining financial strain and
subsequent health outcomes. Objective financial strain refers to a person’s fixed financial
challenges, i.e., low income, high debt burden, or inadequate savings. These objective indicators
of financial strain, categorized as material, can be measured quantitatively and serve as important
markers of financial vulnerability. Subjective financial strain reflects individuals’ perceptions of
their financial situation and the stress it generates and is categorized as psychosocial. It considers
how individuals interpret and internalize financial challenges, including feelings of financial
insecurity, worry, and psychological distress associated with financial strain. Financial strain can
also lead to various behavioral responses. These may include financial coping strategies (e.g.,
reducing expenses, seeking additional employment), health-related behaviors (e.g., skipping
healthcare appointments, unhealthy coping mechanisms), and social behaviors (e.g., isolation,
strained relationships).
Tucker-Seeley and Thorpe’s (2019) model of financial strain recognizes that it can be
influenced by social determinants such as education, employment, social support, and access to
16
resources. These social factors can either exacerbate or buffer the impact of financial strain on
health outcomes (Tucker-Seeley & Thorpe, 2019).
Understanding the Financial Hardship of Caregiving
The material-psychosocial-behavioral model of financial hardship among caregivers
illustrates that care-related financial hardships are complicated and overlapping (Tucker-Seeley
& Thorpe, 2019). These financial hardships could arise from the loss or modification of
employment (i.e., reduced hours, less income), significant out-of-pocket expenses needed to
cover food, medicine, and supplies, low- and middle-income caregivers who cannot afford to pay
privately for caregiver services but are ineligible for public programs, like Medicaid. Data
collected from caregivers also can illuminate the impact on caregivers who do not self-identify as
such who may not receive the help and support they need (Levitsky, 2014). Heterogeneity in the
caregiving experience and disease trajectory of care recipients underscore the importance of
tailored, person-centered support options (e.g., targeted financial education interventions).
A review of the literature published between 2010 and 2022 on financial hardship and
caregiving indicated a dearth of literature in this space. The factors contributing to caregiver
burden are commonly investigated from a multifactorial perspective and examine the combined
effect of stressors of caregiving, including financial stressors. The Zarit caregiver burden scale,
for example, includes physical, mental, and financial health components (Zarit, et al., 1986).
Financial health has received less attention than physical and mental health components. Few
studies have investigated the unique impact of financial hardship on caregivers (i.e., Sun et al.,
2009; Nam, 2016). With the demand for caregivers increasing, it is essential to better understand
the financial consequences associated with caregiving to ensure that both caregivers’ needs and
financial security are supported. Given the financial disparity between caregivers and non-
17
caregivers, understanding how caregiving status impacts caregivers’ economic well-being is an
essential financial equity issue.
Often, terms applied to address financial hardship are poorly defined and inconsistent
across studies. Financial hardship in the literature has been called financial distress, financial
burden, financial strain, financial difficulty, financial toxicity, economic hardship, and economic
hardship. SES similarly does not capture financial hardship accurately, as some relatively high
SES families experience financial hardship from caregiving when considering subjective factors
(Tucker-Seeley & Thorpe, 2019). The subjective and psychological aspects of financial hardship,
even when not measured objectively, offer valid indicators of the caregivers’ lived experiences,
which often go unrecognized in relation to their objective financial status. Moreover, many
studies examining the cost of caregiving do so via a monetary perspective, such as out-of-pocket
costs, the cost to society, and financial value (the hours and services of care provided). Income
and material costs do not adequately capture financial hardship accurately because, while related,
financial hardship can be present across the household income distribution, including those who
experience high costs of living (Kahn & Pearlin, 2006). Socioeconomic status (SES) thus does
not accurately capture financial hardship, as it relies only on income to indicate one’s economic
status (Tucker-Seeley & Thorpe, 2019).
The Current Study
This dissertation seeks to contribute to the understanding of financial hardship among
caregivers, focusing on spousal caregivers and Latino communities, both vulnerable to financial
strains. The research is structured around three primary objectives. First, it analyzes data from a
nationally representative sample of U.S. caregivers to address specific financial challenges faced
by spousal caregivers and examine how spousal caregiving is associated with subjective financial
strain. Second, it explores the financial experiences and related insights of Latino caregivers of
18
persons living with dementia through qualitative analysis, addressing the lack of knowledge
about the financial impacts of caregiving in this demographic. This analysis informs a financial
psychoeducational intervention designed to lower out-of-pocket care costs by replacing personal
spending with community and informal resources and facilitating help-seeking behaviors. Third,
the dissertation evaluates the acceptability and effectiveness of this intervention for Latino
caregivers of persons living with dementia, aiming to improve their financial well-being and
reduce out-of-pocket expenses.
Dissertation Aims
This dissertation is structured around three primary aims:
The first aim, presented in Chapter 2, quantitively tests if being a spousal caregiver is
associated with subjective financial strain using a nationally representative dataset (Health and
Retirement Study) to compare cross-sectional and longitudinal outcomes for spousal caregivers
versus non-caregivers. I hypothesize that (1) compared to non-caregivers, spousal caregivers will
have greater subjective financial strain (e.g., lower levels of financial satisfaction and less ability
to pay monthly household bills), and (2) spousal caregivers who are identified as being new to
the caregiving role will have greater subjective financial strain than ongoing caregivers and noncaregivers.
This dissertation’s second aim, presented in Chapter 3, uses qualitative methods to
examine covering costs of care based on the lived experience of Latino caregivers of persons
living with dementia. In addition, possible cultural contexts associated with caregiver expenses
are explored. Examining the reasons behind how caregivers view their role and manage carerelated expenses and out-of-pocket costs adds to the existing body of literature on why Latino
caregivers spend more money in proportion to their income than caregivers of other race/ethnic
groups. Findings from this work have been applied to inform the development of the
19
CONFIDENCE program, a financial psychoeducational intervention for Latino caregivers of
persons living with dementia. This intervention is described in further detail in Chapter 4.
The third and final aim is to test the acceptability of the CONFIDENCE intervention
according to the Latino caregivers of persons living with dementia who participated in its pilot
implementation. Using a theory-driven lens, the experience of caregivers participating in the
CONFIDENCE intervention is gauged by analyzing post-intervention qualitative interview
transcripts and participant satisfaction surveys guided by Sekhon’s framework of acceptability
(Sekhon et al., 2017). This analysis interprets caregiver feedback on the intervention’s
appropriateness based on the caregiver’s experience and can inform future implementations of
the program.
The next three chapters detail the research conducted to meet the objectives established in
Chapter 1. The final chapter, Chapter 5, consolidates the findings from each chapter, highlighting
how caregiver data can be presented to underscore financial hardship as a critical policy issue,
both by addressing policy gaps in the caregiving field and elevating caregiving onto the policy
agenda. Examples of U.S. policies that have the potential to support family caregivers are
discussed. I conclude this dissertation with a discussion of its implications and potential areas for
future research to further our understanding and support for the expanding family caregiver
population.
20
CHAPTER II: THE IMPACT OF SPOUSAL CAREGIVING ON FINANCIAL WELLBEING: A CROSS-SECTIONAL AND LONGITUDINAL ANALYSIS
Overview
Caring for a spouse can significantly impact a caregiver’s financial stability, potentially
leading to economic insecurity and negative health consequences. This study investigates the
relationship between spousal caregiving and perceived financial well-being, measured by
financial satisfaction and ability to meet monthly expenses. Using data from the 2008-2018
Health and Retirement Study, I assess whether individuals providing care for their spouses report
greater subjective financial stress over a subsequent four-year period than non-caregivers. A
higher proportion of caregivers reported not being satisfied with their current financial situation
(p-value = 0.043) and not being able to pay monthly household expenses (p-value <0.001). These
associations are stronger for new caregivers (p-value <0.001). Longitudinal results via lagged
dependent variable regression models did not support cross-sectional findings. Results highlight
the economic challenges spousal caregivers face, especially for those transitioning into the role.
Developing financial support programs, interventions, and policy solutions is essential to
strengthen the financial resilience of those caring for their partners.
Introduction
The U.S. increasingly relies on family caregivers to meet the needs of a growing number
of older adults living with long-term chronic and disabling conditions. Approximately 38 million
people provide 36 billion hours of unpaid care to an older adult, at an estimated value of over
$600 billion (age 50 and over) (AARP, 2023). Spousal caregivers comprise 12% of these
caregivers, amounting to nearly 4.6 million spousal caregivers (AARP & NAC, 2020). Despite
constituting a lower proportion of caregivers than adult children, spousal caregivers provide
more intensive care. Fifty-nine percent of spousal caregivers are classified as “high intensity”
21
caregivers, a rate significantly higher than those caring for a parent or parent-in-law at 35%,
other relatives at 44%, and non-relatives at 31% (AARP & NAC, 2020), and 55% tackle
caregiving responsibilities alone, reporting a lack of any outside help (Ornstein et al., 2019).
Spousal caregiving is associated with increased depressive symptoms, higher caregiver burden,
worse self-reported health, and more intense grief as the disease progresses (Chan et al., 2012;
Kim et al., 2012; Lee & Zurlo, 2014; Rigby et al., 2019; Liu, 2021; Liu et al., 2023). Compared
to other family caregivers, spousal caregivers are older, less educated, and have lower household
incomes (Lee & Zurlo, 2014). While many studies have focused on the mental health impacts of
caregiving for a spouse, there is a shortage of research on the financial implications of spousal
caregiving (Zhu et al., 2015).
The Financial Burden of Caregiving
Almost half (47%) of caregivers in the U.S. report experiencing at least one financial
setback because of caregiving. Financial setbacks could be reducing savings for retirement, using
personal funds for care costs, and spending less money on themselves (Skufca & Rainville,
2021). Financial concerns are a critical aspect of the stress experienced by caregivers (Lai et al.,
2012; Gordon, 2018; Khandelwal et al., 2020). The financial implications of caregiving may be a
more substantial predictor of caregiver burden than other factors, including demographic and
health-related variables (Lai et al., 2012). More than three-quarters of caregivers (78%) regularly
spend their own money on out-of-pocket costs related to caregiving. The average caregiver
spends $7,242 each year on care costs, while those caring for a person living with dementia
spend an average of $8,978 annually. Caregivers who provide more hours and higher-intensity
care also spend more than the average, $8,603 and $8,811, respectively (Skufca & Rainville,
2021). These costs span a wide range of products and services, including medical equipment, copayments, medications, personal care supplies like incontinence products, caregiving supplies,
22
significant household expenditures (i.e., home modifications) or ongoing expenses like rent and
utilities, and a variety of other related costs (Gordon et al., 2018; Skufca & Rainville, 2021;
Mage et al., 2023).
Caregivers report considerable difficulty finding affordable care, often experience
uncertainty about caregiving expenses, and are generally unprepared for the high costs of
caregiving and long-term care services and supports (Reinhard et al., 2008; DeDalt et al., 2016;
Fan et al., 2023). Over 90% of caregivers take on some sort of financial role in addition to their
caregiving duties. This involves providing direct monetary assistance or managing various
aspects of the care recipients’ financial affairs (Merrill Lynch & Age Wave, 2017). Many
caregivers use their personal funds to manage care costs to meet the various out-of-pocket
expenses incurred (Lee et al., 2014; Mage et al., 2023). Employed caregivers can experience
financial strain due to missing work for caregiving duties, having to reduce working hours, or
even job loss, which all indirectly affect their financial stability (Cohen et al., 2019; Ploeg et al.,
2020). Spending savings and reducing labor force participation can harm the long-term financial
well-being of spousal caregivers. Often, caregivers have little choice in resorting to these
options, while others lack the money management skills needed to make choices to preserve
financial well-being while providing care (DeDalt et al., 2016). Caregivers’ financial insecurity
has immediate and long-term impacts on their ability to meet basic needs, career development,
wealth, and overall well-being (Templeman et al., 2020).
Spousal caregivers experience greater financial strain compared to other non-spousal
caregivers and report experiencing more financial impacts than caregivers to non-spouses
(Pinquart & Sörensen, 2011; Lee & Zurlo, 2014; NAC & AARP, 2020). They more often coreside with their care recipient, making the likelihood of experiencing financial impacts from the
23
caregiver double that of those who do not live together (NAC & AARP, 2020). Spouses provide
practical and emotional assistance to their partners in addition to physical support (Caro &
Blank, 1988; Pinquart & Sörensen, 2003) and often do not qualify for Medicaid-funded support
for family caregivers. These factors combined point to the need for a greater understanding of the
financial impact of caregiving on spousal caregivers.
Subjective Financial Health
Financial health is a social determinant of health with strong associations with physical
and mental health outcomes (Weida et al., 2020). Perceived income inadequacy, not household
income, is a greater predictor of self-reported anxiety and depressive symptoms (Sun et al.,
2009). Understanding the financial implications of spousal caregiving requires recognizing all
the financial risks caregivers face, including those determined by subjective measures (TuckerSeeley & Thorpe, 2019). Subjective financial well-being measures how a person perceives their
financial status and economic situation (Vera-Toscano et al., 2006). Financial strain is a
subjective measure, as opposed to objective measures like income and employment (French &
Vigne, 2019). Examples of financial strain include struggling to pay household bills,
experiencing anxiety about money, and suffering negative impacts on well-being and health due
to financial anxieties. Subjective measures of one’s financial situation have been found to better
predict health outcomes and quality of life than objective measures (Williams et al., 2017; Chen
et al., 2018). Women generally experience more financial strain than men, especially in
retirement, and racial/ethnic minorities are more likely to face financial difficulties compared to
White individuals (Louge, 1991; Szanton et al., 2008; Fonseca et al., 2012; Assari, 2019).
Financial hardships are multifaceted and overlapping, including material components and
measures of psychosocial and behavioral factors (Tucker-Seeley & Thorpe, 2019). Lai (2012)
identified a strong link between caregivers’ subjective experiences of financial strain due to their
24
caregiving duties and the level of burden they endure. The study revealed that 40% of caregivers
had to dip into their savings to cover costs, and over a third had to sacrifice necessities due to the
expenses of caregiving. Additionally, 36.8% reported that providing care was prohibitively
expensive (Lai, 2012). Analyzing financial well-being from a personal perspective can provide a
comprehensive understanding of individual behavior and fulfillment within society (Toscano et
al., 2006). Emphasizing the individual’s subjective experience of financial strain offers valuable
insights for researchers into how personal perceptions and emotional reactions to one’s financial
circumstances impact overall well-being (Ryu & Fan, 2022). It can help evaluate an individual’s
financial health and overall life evaluation (Ng & Diener, 2014; Netemeyer et al., 2018).
A well-established relationship exists between subjective financial instability and
increased health risks (Kahn & Pearlin, 2006). Not being able to pay bills and lack of financial
planning are significantly associated with depression and self-rated physical health (Weida et al.,
2020). Financial strain is associated with poorer physical health, lower quality of life, increased
depressive symptoms, stress, and anxiety (Andren & Elmstahl, 2007; Dijkstra-Kersten et al.,
2015; Nam, 2016; Pinquart & Sorensen, 2007; Sun et al., 2009; Savoy et al., 2014; French &
Vigne, 2019; Ryu & Fan, 2022), particularly when contrasted with individuals in more secure
financial positions (Semple, 1992; Tucker-Seeley et al., 2009). Financial health is critical for
maintaining physical and mental wellness and might better predict mortality than annual income
(Semple, 1992; Tucker-Seeley et al., 2009; Szanton et al., 2016). Research has also found that
following the death of the care recipient, suicidal ideation is more common among caregivers
who experienced pre-loss financial hardship (Viola et al., 2023).
Insecurities regarding basic needs like as housing and food can lead to an increased risk
of chronic diseases, higher stress levels, and a greater incidence of depression (Choi, 2009;
25
Lepore & Rochford, 2019). In addition, a reduction of health-promoting behaviors occurs when
high levels of financial strain occur (Macy et al., 2013). Caregivers experiencing financial
difficulty are more likely to feel overwhelmed and trapped in their responsibilities, indicating
role overload and captivity (Liu et al., 2019), so it is no surprise that financial strain predicts care
recipient nursing home placement (Spillman & Long, 2009). Caregivers experiencing financial
hardship are also less likely to enroll in interventions that could benefit them and their care
recipient (Karlawish et al., 2003). When caregivers do participate in interventions, treatment
failure is significantly associated with financial hardship (Rose & Gitlin, 2017).
Despite substantial evidence showing mental health implications of financial strain
among caregivers and non-caregivers, few studies have examined the impact of caregiving on
subjective financial strain using robust longitudinal approaches. This study uniquely contributes
by examining the impact of caregiving on subjective financial strain through such analysis,
filling a notable gap in the literature.
The Present Study
This study aims to contribute to the emerging body of literature on the financial aspects
and economic impact of spousal caregiving using data from the Health and Retirement Study
(HRS, 2023). Previous research employing HRS data indicates that caregiving roles increase the
risk of economic hardship for women later in life. Wakabayashi and Donato (2006) found that
women who shoulder the responsibility of caregiving for their aging parents face financial
challenges and a significantly increased risk of poverty in later life. In addition, the authors
found that caregivers providing at least 20 hours of care per week are more likely to depend on
public assistance and qualify for Medicaid in the future (Wakabayashi & Donato, 2006). Spousal
research using HRS data revealed that spouses assuming caregiving responsibilities often
experience an increase in depressive symptoms over time relative to non-caregivers. In this
26
study, the authors theorized that a couple’s available financial resources would influence
caregiver stress (Dunkle et al., 2013).
In the present study, I explore the association between spousal caregiving and financial
well-being using HRS data collected between 2008 and 2018. Specifically, I investigate the
relationship between spousal caregiving and subjective financial strain. I focus on spousal
caregivers, recognizing the distinct and specific stressors that uniquely affect this group within
the caregiving community. As part of the analysis, the relationship between caregiver status (i.e.,
new or ongoing caregiver) and subjective financial strain is also explored. Data are examined
through cross-sectional analysis to assess the data at a specific point in time (Wave 1) and
longitudinal analysis to observe changes and trends over an extended period of four years (Wave
1 to Wave 2). Findings can inform the development or refinement of programs and policies to
support spousal caregivers at risk of financial strain and identify risks within this population.
Given the economic and family demands placed on spousal caregivers and due to the lack
of preparation for care costs and the transition into the caregiving role those new caregivers
experience, I have four hypotheses:
(1) Spousal caregivers will experience worse subjective financial well-being in Wave 1
than non-caregivers;
(2) Spousal caregivers will experience worse subjective financial well-being over time (in
Wave 2) than non-caregivers;
(3) Respondents new to the caregiving role will experience worse subjective financial
health than both ongoing- and non-caregivers in Wave 1;
(4) Respondents new to the caregiving role will experience worse subjective financial
health than both ongoing- and non-caregivers over time (in Wave 2).
27
Methods
Data
We utilized data from publicly available Health and Retirement Study (HRS) files from
waves 2008-2018, including the Core HRS and Psychosocial Leave-Behind Questionnaire (HRS,
2023). The HRS is a longitudinal research project in the U.S. that aims to understand individuals’
health, well-being, and economic circumstances as they age. It follows a nationally
representative sample of community-dwelling adults ages 50 and older and their spouses. Every
two years, data are collected on topics such as physical and mental health, healthcare utilization,
employment, income, assets, and retirement planning. The HRS provides valuable insights into
the complex dynamics of aging and their implications for public policy and individual well-being
through rigorous data collection and analysis.
A respondent in the HRS can be identified as a spousal caregiver if their spouse during
their survey notes that their partner assists with their ADL/IADL limitations. This includes those
respondents with cognitive impairment, like dementia (Meyer et al., 2022). Using a spouse’s
unique identifier, we merged data from the HRS public use “helper” files with the RAND fat file
of respondent socioeconomic data. The caregiver-care-recipient relationship is detailed in the
helper files. In 2004, HRS introduced a ‘Psychosocial Leave-Behind Participant Lifestyle
Questionnaire’ to be filled out by a 50% random sample of those who completed the core HRS
interview biennially. Information about a spousal caregiver’s life circumstances, subjective wellbeing, and lifestyle—including financial variables—is captured in this survey. My analysis
includes data from 2012 onward since the Leave-Behind questionnaire included subjective
financial well-being measures starting from that year. Data were combined in waves to account
for the biennial nature of the Leave-Behind Questionnaire. Wave 1 combines data from the 2012
and 2014 HRS years, and Wave 2 includes the 2016 and 2018 HRS years. Data from waves 2008
28
and 2010 (not included in the analysis) were used as a baseline wave to determine caregiver type
in Wave 1, i.e. new vs. ongoing caregiver.
Variables
Spousal Caregiving. The independent variable in our analysis was whether a respondent
was a spousal caregiver in Wave 1, either in 2012 or 2014, depending on their survey year. HRS
survey participants are asked if they face difficulties completing basic ADLs or IADLs (Wallace
& Herzog, 1995) due to health or memory conditions. If they respond “Yes,” they are prompted
to identify the person who provides the most care and their relationship with that person. Spousal
caregivers were therefore identified by respondents who noted their spouse as a primary
caregiver. The analysis excluded non-spousal caregivers due to potential differing financial
obligations and care circumstances. Further details regarding the creation of the analytic sample
are available and can be provided upon request.
Caregiving Status. In addition, we classified spousal caregiver status into four
categories: new caregivers, ongoing caregivers, former caregivers, and non-caregivers. To
determine the appropriate classification for Wave 1, we used data from responses from previous
assessments, either conducted in 2010 or 2012 (Wave 0), before the first wave of our current
study. ‘New caregivers’ were those who reported they were caregivers in Wave 1 but were not
included as caregivers in Wave 0. ‘Ongoing caregivers’ were those identified as a spousal
caregiver in Wave 0 and Wave 1. ‘Former caregivers’ were those who said they were caregivers
in Wave 0 but in Wave 1 were not, which we interpreted as an exit from the role. ‘Noncaregivers’ were neither caregivers in Wave 0, nor Wave 1.
Subjective Financial Strain. In this study, the dependent variable of interest is
subjective financial strain. This is assessed using the respondent’s (1) satisfaction with their
current financial situation and (2) perceived ability to meet monthly bills and expenses. These
29
items are included within the self-administered ‘Psychosocial Leave-Behind Participant Lifestyle
Questionnaire’ left with the respondent following the core interview.
In assessing current financial satisfaction (1), participants were asked to rate the question,
“Right now, how satisfied are you with your present financial situation?” using a five-point
Likert scale, where ‘1’ indicates ‘Completely satisfied’, ‘2’ represents ‘Very satisfied’, ‘3’
denotes ‘Somewhat satisfied’, ‘4’ signifies ‘Not very satisfied’, and ‘5’ corresponds to ‘Not at all
satisfied’. To ensure robust cell sizes of approximately equal size, these responses were
recategorized into ‘Satisfied’ (responses of 1, 2, or 3) and ‘Not satisfied’ (responses of 4 or 5).
Regarding the ability to pay monthly bills (2), participants were asked to rate the question, “How
difficult is it for you/your family to meet monthly payments on your/your family’s bills?” using a
similar five-point Likert scale, with ‘1’ being ‘Not at all difficult’ and ‘5’ being ‘Completely
difficult’. These responses were also dichotomized for analysis, with ‘Not difficult’ comprising
responses of 1, 2, or 3, and ‘Difficult’ capturing responses of 4 or 5.
Covariates
Models in this study controlled for variables that could impact financial well-being.
These include the demographic markers of age, race and ethnicity, gender, educational
attainment, and employment status. Age was determined by the difference between the birth year
reported and the survey year and subsequently coded into categories defined by the AARP’s age
brackets: 18-34, 35-49, 50-64, 65-74, and 75 and above (AARP, 2020). The age category of 18-
34 was combined with 35-49 due to small cell sizes (<10). Gender was delineated as Male or
Female. Race/ethnicity was codified into four groups: White, Non-Hispanic; Black, NonHispanic; Hispanic; or Other, Non-Hispanic. Education level was categorized as less than high
school, high school or equivalent (GED), some college, or college and above. Reported Income
and household size was used to determine 200% the Federal Poverty Level (FPL), following the
30
Federal Poverty Guidelines for the survey year (U.S. DOH, n.d.). Finally, employment status was
classified as either working for pay or not.
Analysis
Descriptive statistics and bivariate analysis were applied to describe the sample’s
demographic characteristics and the study’s measures. A lagged dependent variable (LDV)
regression analysis using Stata version 18.0 (StataCorp, 2023) was used to understand the
relationship between spousal caregiving and the three indicators of subjective financial strain
while controlling for age, gender, race, education, and employment status. Outcomes were
lagged by one wave. In LDV analysis, independent variables from Wave 1 – spousal caregiving
status – predict outcome variables in Wave 2 – subjective financial measures – while controlling
for Wave 1 outcomes as predictors to ensure outcome variable stability (O’Neill et al., 2016).
Wave 1 combined data from the 2012 and 2014 HRS years, and Wave 2 included the 2016 and
2018 HRS years, depending on which year the participant completed the Leave Behind survey.
Results
Sample Characteristics
Table 2.1 shows the descriptive characteristics of the analytic sample (N = 7,566). Wave
1 included 663 spousal caregivers (9% of the total sample). 59% of spousal caregivers were
female. Most spousal caregivers identified as White (61%). Among spousal caregivers, 17%
identified as Black, and 18% were Hispanic. Caregivers indicating “Other” race represented less
than 4% of the sample. Of the spousal caregivers, 301 (45%) were new to the caregiving role in
Wave 1, and 362 (55%) were ongoing caregivers. There were several differences in the
demographic characteristics of caregivers relative to those who had not been a caregiver in any
wave (Waves 0, 1, or 2). A higher proportion of spousal caregivers identified as being Hispanic
ethnicity than those who had not been a caregiver in any wave (18% vs. 14%). Educational
31
attainment was significantly different between spousal caregivers and non-caregivers, compared
to 18% of those who had never been a caregiver for their spouse, 24% of spousal caregivers
reported that they had not completed high school. Only 15% of spousal caregivers reported that
their highest level of education was at least a college, compared to 24% of respondents who had
not been a caregiver. Spousal caregivers were more likely to report income that was less than
200% of the FPL (48% vs. 35%) and that they were not working for pay (28% vs. 39%). A
higher proportion of caregivers reported not being satisfied with their current financial situation
(24% vs. 19%). Similarly, relative to non-caregivers, a higher proportion of caregivers reported
not being able to pay monthly expenses (39% vs. 29%). These relative proportions among
caregivers and non-caregivers remained consistent when examining the financial variables using
Wave 3 data.
Prevalence of Financial Strain According to Caregiver Status
Bivariate results using Wave 1 data indicate a statistically significant difference between
the age of spousal caregivers and those who had not been a caregiver (χ² = 11.10; p-value =
0.011), race (χ² = 13.39; p-value = 0.004), educational attainment (χ² = 35.51; p-value < 0.001),
being at or under 200% FPL (χ² = 48.35; p-value <0.001), and whether the respondent was
working for pay (χ² = 29.60; p-value <0.001). There were also significant associations found
among the financial indicator variables. Results from a Pearson Chi-Squared analysis indicated
statistically significant differences between spousal caregivers and non-caregivers reporting that
they are less satisfied with their current financial situation (χ² = 6.95; p-value=0.008; 24% vs.
19%) and less able to meet their monthly household expenses (χ² = 23.05; p-value < 0.001; 39%
vs. 29%).
Results from cross-sectional regression analysis of Wave 1 data reveal significant
associations between spousal caregiving and both indicators of subjective financial strain.
32
Spousal caregivers were more likely to report lower odds of financial satisfaction (OR = 0.79; CI
[0.63, 0.99]; p-value = 0.043) and ability to pay bills (OR = 0.67; CI [0.54, 0.81]; p-value
<0.001). Within spousal caregivers, those who were new caregivers as of Wave 1 had lower odds
of feeling satisfied with their current financial situation (OR = 0.54; CI [0.40, 0.74]; p-value <
0.001; Table 2.2). They also were more likely to report difficulty in meeting monthly household
expenses (OR = 0.55; CI [0.41, 0.73]; p-value < 0.001; Table 2.3).
Cross-tabulations between Wave 1 and Wave 2 show that financial status among spousal
caregivers is largely stable, with only minor shifts from satisfaction to dissatisfaction and vice
versa. The findings reveal that those spousal caregivers in Wave 1 who initially reported present
satisfaction with their current financial situation or in their ability to pay monthly bills remained
stable, with only <15% shifting to dissatisfaction. Conversely, a larger proportion of those
initially dissatisfied financially in wave 1 reported financial satisfaction in the next wave (49%).
Findings were similar for new and ongoing caregivers, the majority of whom reported
satisfaction with their financial situation across waves. A similar pattern was observed for
perceived ability to pay monthly bills, with approximately 63-65% of those reporting inability to
pay bills in Wave 1 reporting this in Wave 2. Still, while most caregivers reported being able to
pay bills across both waves, the proportion who reported perceived ability to pay bills across
both waves was slightly lower than those who reported financial satisfaction at both waves.
Odds of Experiencing Financial Strain According to Caregiver Status
The LDV analysis shows that spousal caregivers in Wave 1 have lower odds of reporting
financial satisfaction (OR = 0.78; CI [0.56, 1.09]) and ability to pay their household’s monthly
bills (OR = 0.80; CI [0.58, 1.08]) than those who were not caregivers, but these differences were
not significant. When examining spousal caregivers by caregiver type, both new and ongoing
caregivers had lower odds of being satisfied with their current financial situation (relative to non-
33
CGs?) in Wave 1 (Table 2.4). Ongoing caregivers had the lowest odds of being satisfied with
their current financial situation, but this association was not supported by LDV analysis (OR =
0.70; CI [0.45, 1.08]; p-value = 0.105). New and ongoing caregivers had lower odds of reporting
that they were able to meet monthly expenses, but these associations were not significant (Table
2.5). Similarly, new caregivers reported the lowest odds, but these associations were also not
significant (OR = 0.66; CI [0.42, 1.03]; p-value = 0.067).
Discussion
The present study examined the influence of spousal caregiving on subjective financial
strain using nationally representative data among older adults from the HRS (2008-2018). I first
tested the impact of providing care for a spouse on ‘current’ (Wave 1) and future (lagged over
four years) financial strain, measured by their current financial satisfaction and their ability to
meet monthly payments on household bills. Then, I explored if being a new caregiver in Wave 1
differentially impacted the experience of financial strain in both Wave 1 and lagged over four
years in Wave 2. The cross-sectional analysis found significant differences between spousal
caregivers and those who had not been caregivers for both variables, with spousal caregivers
being significantly more likely to report less financial satisfaction and a lowered ability to cover
monthly bills. Among caregiver status, new caregivers were significantly more likely to report
not being financially satisfied and not able to cover their household’s monthly bills. Results of
the lagged analysis show that spousal caregivers have higher odds of reporting future financial
strain. However, these findings did not reveal significant differences for either variable, which
contradicts our hypotheses that spousal caregiving would predict future financial strain.
Cross-sectional findings support previous studies. For example, George and Gwyther
(1986) found that spousal caregivers experience lower levels of financial well-being when
compared to non-spousal caregivers. Caregivers are also more likely to report an increase in
34
household debt due to providing care (Bradley et al., 2014), which contributes to a lack in ability
to pay monthly bills. More recently, a joint report by the NAC and the AARP Public Policy
Institute (2020) confirmed that spousal caregivers experience more financial impacts than
caregivers to non-spouses. One in five caregivers reports that they struggle to pay their bills on
time, and more than one in ten reported not being able to cover basic expenses, such as housing
and food. Among Canadian spousal caregivers, nearly one in five (17.6%) report experiencing
financial hardship due to their caregiving responsibilities (Duncan et al., 2020). Caregivers who
care for their spouses also had 35% higher odds of experiencing difficulties in meeting basic
household expenses than other types of caregivers (Lee & Zurlo, 2014). Spousal caregivers
report more costs associated with medical bills and medication than other types of caregivers
(Caro & Blank, 1988; Duncan et al., 2020; Hastert et al., 2022).
Although findings from bivariate and cross-sectional analysis show that spousal
caregiving is significantly associated with subjective financial strain and that newer caregivers
fare worse, using LDV regression analysis shows that these results are not supported over time.
Null findings in the two-wave lagged analysis suggest that these cross-sectional associations do
not persist over time. Still, high odds ratios from the longitudinal analysis suggest stability,
indicating that the financial burden may remain consistent over time, which could be why no
change in one’s financial satisfaction or ability to pay bills over time is captured. A larger
proportion of spousal caregivers who initially reported they did not have present financial
satisfaction reported satisfaction in the next wave, indicating transitory periods of financial
difficulty. The most notable change is that new caregivers in Wave 1 experience more difficulty
paying bills, but this difficulty appears to decrease over time.
35
Overall, the data highlight a significant degree of financial stability, with some
individuals moving in and out of financial difficulty. Such findings are potentially due to coping
mechanisms, adaptation, or changes in caregiving status. Variations in how caregivers handle the
out-of-pocket expenses associated with ongoing care and the availability of resources to recover
from the financial costs of caregiving might have affected lagged outcomes. Additionally, it is
important to consider the measures used in this study. For example, an alternative explanation of
findings is that some spousal caregivers may engage in cognitive-emotional coping to manage
their expectations around financial well-being, such that measures of financial hardship are less
affected over time. Supporting the likelihood that moderated expectations at least partially
explain our results, Caro and Blank (1998) found that when spousal caregivers incur care costs,
they are less likely to report these as a financial burden than non-spousal caregivers.
Financial health literature has recognized disparities related to gender and race/ethnicity
(Li et al., 2017). In addition to lower levels of financial literacy, women and minorities might
face a disadvantage in managing finances due to prevalent gender and racial wealth gaps (Altonji
& Doraszelski, 2005; England et al., 2020; Percheski & Gibson-Davis, 2020). Further subgroup
analysis might be warranted, as research has found that financial hardship is more common
among non-White caregivers, younger caregivers, and those with lower levels of educational
attainment (Kim & Schulz, 2008; Greenfield et al., 2018; Weida et al., 2020). Further exploration
is also warranted regarding caregiver type (i.e., new vs. ongoing) and its impact on financial
strain. The literature reveals little on this topic, but prior work confirms that spousal caregivers
who are new to the role experience a significant increase in the number of depressive symptoms
compared to non-caregivers (Dunkle et al., 2014; Kaufman et al., 2019; Liu et al., 2023) and are
less likely to return to the workforce (Kaufman et al., 2019). As prior work using HRS indicates
36
that financial resources influence caregiver stress (Dunkle et al., 2013), it can be theorized that
new spousal caregivers experiencing more depression also have worse financial strain, which can
be exacerbated due to lack of employment. However, research is needed to support these
assumptions.
Many older adults in the U.S. are surprised by the significant costs related to long-term
care services and support and the lack of public resources to provide support. Moreover,
caregivers typically have limited care-related training to teach them how to perform caregiving
tasks, which can lead to a greater care-induced burden (Huang et al., 2009; Rocha et al., 2022).
While there is a general awareness of this issue, many adults neglect to make financial or
practical preparations for assuming a caregiving role, including failing to discuss such plans with
their families (Hamel & Montero, 2023). In addition, among caregivers who experience stress on
any level, research has found that those without financial planning experience higher stress levels
than those with financial strategies in place (Gordon et al., 2018). Caregiver financial strain also
affects health outcomes for the care recipient, both in relation to treatment and care (Karlawish et
al., 2003; Spillman & Long, 2009; Rose & Gitlin, 2017). However, most evidence-based
caregiver interventions do not address financial literacy and the available resources that may be
needed to offset out-of-pocket costs, despite their potential to improve caregivers’ economic
well-being. Powerful Tools for Caregivers (PTC; PTC, 2013), for example, provides evidencebased web-based group courses on stress and emotion management, self-confidence, and local
community resources to empower caregivers to better care for themselves and enhance their selfefficacy. Such caregiver training programs could consider including financial assistance courses
to help caregivers manage out-of-pocket costs and identify resources to offset expenses. Support
can also come from healthcare providers who could include discussions about the financial
37
impact of chronic illness, like dementia, when a patient is diagnosed and provide appropriate
education and resources.
Improved options to support financial security and social support are needed for spousal
caregivers who face unique economic challenges. Gordon (2018) found that caregivers who took
preemptive steps toward improving financial management tended to handle the monetary
demands of caregiving more effectively. These preparatory actions could include allocating
funds specifically for caregiving-related costs, investigating insurance policies, or establishing
legal provisions for future care needs. Engaging in such anticipatory financial strategies can
mitigate some economic unpredictability linked with caregiving, diminishing the stress often
accompanying financial concerns. However, help with planning and financial literacy must be
available for caregivers through such actions as policy reforms to make long-term care insurance
policies and services more affordable and available. Research has also found that social support
is crucial in mitigating financial strain among spousal caregivers (Lee & Zurlo, 2014). This
suggests that engaging in enjoyable activities and social interactions can significantly alleviate
the perceived financial strain experienced by spousal caregivers. While this does not diminish the
reality of financial hardship, such interventions can mitigate the impact of the financial hardship
effects of caregiving on caregivers’ mental health.
Future Research
The literature has well-documented that financial strain has negative implications for
health and well-being, regardless of whether one is a caregiver. However, given the high cost of
care and demands of caregiving, caregivers with inadequate financial resources increase their
risks of financial insecurity. Hence, it is important to implement financial-related behavioral and
policy interventions to address out-of-pocket care expenses and reduce the burden of care as
one’s financial situation deteriorates. Considering the study’s findings, endorsing policy
38
strategies that offer financial assistance to caregivers emerges as a noteworthy approach to tackle
the concerns of caregivers and care recipients. To deepen our understanding of the connections
between spousal caregiving and financial well-being, it is imperative for future research to
explore the year-by-year pathways of financial well-being in caregiving, considering factors such
as age, race/ethnicity, education, social class, and other relevant variables, as more granular
analysis might produce varying results. Future research should also investigate the specific
disease indication of the care recipient, especially given the heightened caregiving demands
frequently faced by those caring for older adults living with dementia.
Limitations
While this study benefits from a broad national sample, it has limitations. The
distribution of the Leave-Behind Questionnaire introduces a potential inconsistency in the impact
of exogenous variables (e.g., economy) on variables across waves, especially when time is reparameterized as it was in the present study. Second, because the predictor and outcome
variables are measured at the same time in cross-sectional analysis, causal relationships cannot
be established. A third limitation is the temporal spacing between the waves and the number of
observational waves. The study was conducted across two points in time, Wave 1 and Wave 2,
which may not have been sufficient to capture the full extent of the trends we were investigating.
Alternatively, the interval between these waves might not allow enough time for significant
transitions to occur, potentially leading to an underestimation of the effect of financial hardship
over time for spousal caregivers. Fourthly, our investigation identified spousal caregivers based
on respondents indicating a spouse’s assistance with ADLs or IADLs in the past year. However,
it is essential to recognize that our definition of caregiving is just one perspective, and there may
be other individuals in the HRS who perceive themselves as caregivers but are not encompassed
by our definition. Lastly, our study treated caregiving as a dichotomous variable, with the
39
independent variable being whether a respondent was a spousal caregiver. Given the potential
impact of higher levels of care intensity on an individual’s financial well-being, looking at the
frequency and duration of care provided care could produce varying outcomes.
Conclusion
The current study provides insight into the unique needs of spousal caregivers related to
the experience of financial strain and adds to the emerging field of research concerning caregiver
financial well-being. Older adults often rely on their partner for care; a key concern should focus
on spousal caregivers’ financial status when entering and maintaining their role and, if possible,
better preparing for the role. The high costs associated with caregiving often lead to financial
anxiety and significant stress, making financial preparedness a crucial moderating variable
(Gordon, 2018; Lai, 2012). Considering the increasing number of older adults in the U.S. who
will require care and their spouses’ role in providing it amidst resistance to facility placement,
safeguarding caregivers’ financial health is of growing importance, especially as spousal
caregivers are often the primary caregivers without additional help, neither paid nor unpaid
(Ornstein et al., 2019).
Our findings suggest that spousal caregiving is significantly negatively associated with
financial satisfaction and the ability to meet household monthly expenses. Spousal caregivers in
our sample had lower odds of being satisfied with their current finances and being able to pay
bills. Still, the LDV analysis did not support our hypothesis that being a spousal caregiver would
predict future financial strain, raising the possibility that other factors may buffer the perceived
financial impact of caregiving over time. These findings may still be used to develop
interventions and technologies that increase caregivers’ access to and confidence in financial
planning (ACL, 2022). We need to extend support to spousal caregivers confronting financial
challenges and resource limitations, ensuring the provision of protective factors, and alleviating
40
out-of-pocket costs, particularly among new caregivers. This is particularly important as
perceived income inadequacy can impact physical and mental health outcomes. Financial
education interventions tailored to spousal caregivers and supportive policies at local, state, and
national levels can help mitigate the financial hardship of caregiving. Furthermore, it would be
advantageous to establish extensive support systems for caregivers. These systems should offer
training, educational resources, counseling, and networks specifically designed to enhance
caregivers’ financial management capabilities and strengthen their confidence. Healthcare
professionals, including long-term care services and support professionals, and policymakers
have the potential to play crucial roles in providing such resources. Developing educational
programs and resources is essential for empowering caregivers with the knowledge and financial
skills necessary to navigate the complexities of their role while reducing stress and improving
financial security and well-being.
41
Table 2.1 Characteristics of Sample Using Baseline Data (Wave 1)
Spousal Caregivers
(N=663)
Non-Caregivers
(N=6,903)
N % N % X
2 p-value
Female 390 58.82 3822 55.37 0.087
Age
18-49 29 4.37 212 3.07 0.011
50-64 227 34.24 2777 40.25
65-74 194 29.26 1847 26.77
75+ 213 32.13 2063 29.90
Race
White 405 61.09 4653 67.52 0.004
African American 114 17.19 1033 14.99
Hispanic 121 18.25 963 13.97
Other 23 3.47 242 3.51
Education
Less than High School 159 23.98 1225 17.75 <0.001
High School or Vocational 247 37.25 2336 33.85
Some College/Associates 155 23.38 1662 24.08
College+ 102 15.38 1678 24.32
Working for Pay 186 28.10 2675 38.84 <0.001
FPL 200 273 53.95 1835 36.17 <0.001
Financial Strain Indicators
Not Satisfied Financially 121 24.30 1015 19.37 0.008
Difficulty Paying Bills 194 38.96 1507 28.68 <0.001
42
Table 2.2 Satisfaction with Present Financial Situation Across Spousal Caregiver Status.
Wave 1. N = 5,725
Odds Ratio SE p-value 95% CI
Caregiver Status
New Caregiver 0.54 0.19 <0.001 (0.40, 0.74)
Ongoing Caregiver 1.13 0.08 0.464 (0.81, 1.57)
Former Caregiver 0.73 0.12 0.061 (0.52, 1.01)
Female 1.02 0.30 0.761 (0.78, 1.17)
Age
50-64 1.22 0.23 0.292 (0.84, 1.77)
65-74 2.54 0.50 0.000 (1.72, 3.74)
75+ 3.34 0.68 <0.001 (2.24, 4.97)
Race
African American 0.48 0.04 <0.001 (0.40, 0.58)
Hispanic 0.82 0.09 0.065 (0.67, 1.01)
Other 0.81 0.15 0.246 (0.56, 1.01)
Education
High School or Vocational 1.24 0.13 0.038 (1.01, 1.51)
Some College/Associates 1.33 0.15 0.009 (1.07, 1.66)
College+ 2.45 0.30 <0.001 (1.93, 3.12)
Working for Pay 1.03 0.08 0.739 (0.88, 1.20)
43
Table 2.3 Ability to Meet Monthly Household Bills Across Spousal Caregiver Status in
Wave 1. N = 5,739
Odds Ratio SE p-value 95% CI
Caregiver Status
New Caregiver 0.55 0.08 <0.001 (0.58, 1.01)
Ongoing Caregiver 0.77 0.11 0.059 (0.41, 0.73)
Former Caregiver 0.68 0.10 0.011 (0.50, 0.91)
Female 0.98 0.60 0.70 (0.86, 1.10)
Age
50-64 1.12 0.20 0.526 (0.79, 1.60)
65-74 2.28 0.43 <0.001 (1.58, 3.29)
75+ 3.18 0.61 <0.001 (2.19, 4.63)
Race
African American 0.55 0.05 <0.001 (0.47, 0.66)
Hispanic 0.77 0.07 0.005 (0.64, 0.92)
Other 0.72 0.12 0.048 (0.52, 0.99)
Education
High School or Vocational 1.76 0.16 <0.001 (1.48, 2.10)
Some College/Associates 2.07 0.20 <0.001 (1.71, 2.50)
College+ 3.74 0.40 <0.001 (3.03, 4.62)
Working for Pay 1.02 0.07 0.760 (0.89, 1.18)
44
Table 2.4 Odds of Satisfaction with Present Financial Situation in Wave 2 by Spousal
Caregiver Status in Wave 1 Compared to Non-Caregivers. N = 3,438
Odds Ratio SE p-value 95% CI
Financial Control in Wave 2 9.02 0.96 <0.001 (7.33, 11.09)
Caregiver Status
New Caregiver 0.88 0.21 0.105 (0.55, 1.42)
Ongoing Caregiver 0.70 0.16 0.609 (0.45, 1.08)
Former Caregiver 0.88 0.23 0.630 (0.53, 1.46)
Female 0.96 0.10 0.670 (0.78, 1.17)
Age
50-64 0.91 0.27 0.760 (0.51, 1.63)
65-74 1.15 0.35 0.658 (0.63, 2.09)
75+ 1.45 0.46 0.244 (0.78, 2.70)
Race
African American 0.70 0.10 0.012 (0.53, 0.93)
Hispanic 0.99 0.16 0.991 (0.73, 1.37)
Other 1.45 0.48 0.266 (0.75, 2.78)
Education
High School or Vocational 1.04 0.17 0.803 (0.76, 1.43)
Some College/Associates 1.23 0.21 0.219 (0.88, 1.73)
College+ 2.14 0.41 <0.001 (1.48, 3.10)
Working for Pay 0.91 0.11 0.434 (0.72, 1.15)
45
Table 2.5 Odds of Being Able to Pay Monthly Household Bills in Wave 2 by Spousal
Caregiver Status in Wave 1 Compared to Non-Caregivers. N = 3,411
Odds Ratio SE p-value 95% CI
Financial Control in Wave 2 11.65 1.13 <0.001 (9.63, 14.10)
Caregiver Status
New Caregiver 0.66 0.15 0.067 (0.42, 1.03)
Ongoing Caregiver 0.93 0.20 0.746 (0.61, 1.42)
Former Caregiver 0.97 0.24 0.887 (0.60, 1.57)
Female 1.01 0.10 0.935 (0.83, 1.22)
Age
50-64 1.90 0.51 0.018 (0.48, 0.82)
65-74 1.70 0.47 0.055 (0.99, 2.93)
75+ 2.05 0.59 0.012 (1.17, 3.59)
Race
African American 0.63 0.09 0.001 (0.48, 0.82)
Hispanic 0.63 0.09 0.002 (0.47, 0.84)
Other 1.34 0.39 0.305 (0.76, 2.36)
Education
High School or Vocational 1.32 0.20 0.604 (0.98, 1.76)
Some College/Associates 1.34 0.21 0.067 (0.98, 1.82)
College+ 2.47 0.43 <0.001 (1.75, 3.47)
Working for Pay 1.04 0.12 0.700 (0.84, 1.30)
46
CHAPTER III: LATINO FAMILY CAREGIVERS’ EXPERIENCES COVERING OUTOF-POCKET COSTS WHEN CARING FOR SOMEONE LIVING WITH DEMENTIA1
Overview
Background and Objectives: The financial burden of caregiving has received less
research attention than physical and emotional costs. This is especially true for underserved
ethnic minorities. Financial strain affects mental and physical health and is unequally distributed
across caregivers of different races and ethnicities. While caregivers overall spend, on average,
one-quarter of their income on caregiving, Latino caregivers, the focus of this study, spend
nearly half.
Research Design and Methods: To better understand this disparity, we conducted eleven
qualitative interviews with fourteen Latino caregivers of persons living with dementia located in
either California or Texas. Interview transcripts were thematically coded, guided by a material–
psychosocial–behavioral conceptual model of financial strain.
Results: We identified three themes: daily needs and costs, psychological distress caused
by financial issues, and stressful barriers accessing family and societal support. Further,
interviews revealed how Latino culture may influence spending patterns and management of
costs. Findings suggest that preference by Latino families to care for a family member in the
home may be met with financial disadvantage due to the high out-of-pocket costs of care.
Discussion and Implications: A better understanding of the factors contributing to high
costs for Latino caregivers and how these costs affect caregivers will inform approaches at both
the individual- and policy levels and inform the development of culturally relevant interventions
to help Latino families lower caregiving costs. This is especially important as the number of
1 This chapter was previously published in The Gerontologist: Mage, S., Benton, D., Gonzalez, A., Zaragoza, G.,
Wilber, K., Tucker-Seeley, R., & Meyer, K. (2023). “I lay awake at night”: Latino Family Caregivers’ Experiences
Covering Out-of-Pocket Costs when Caring for Someone Living with Dementia. The Gerontologist, doi: 10.1093
47
Latinos living with dementia is expected to increase with increase in the older adult Latino
population and effective interventions are lacking.
Introduction
The physical, emotional, and social costs of caregiving for a person living with dementia
are well documented in extensive and growing literature (Pinquart & Sörensen, 2003; Sheehan et
al., 2021). Yet, a consistently reported and understudied challenge is the economic repercussions
of caregiving, including the out-of-pocket costs (Zhu et al., 2015). Family caregivers of persons
living with dementia spend an average of $8,978 per year out-of-pocket on caregiving expenses
(Skufca & Rainville, 2021). In comparison, caregivers to persons with other conditions spend an
average of $7,242 annually. Many expenses assumed by family caregivers (e.g., home
modifications, medications, durable medical equipment) are not covered by Medicare or other
insurance (Rainville et al., 2016). It has been estimated that in the last five years of life, persons
living with dementia and their families spend an average of $61,522 for out-of-pocket costs
versus $34,068 for older adults living with other chronic diseases (Kelley et al., 2015).
In addition to costs to provide care, many caregivers experience loss of income due to the
impact of caregiving on employment, such as leaving the workforce or reducing work hours.
According to a joint report by the National Alliance for Caregiving (NAC) and the Alzheimer’s
Association (2017), two-thirds of caregivers of persons living with dementia report that
caregiving affected their employment. Of these, 10% quit their job or retired early, 17% took a
leave of absence, and 9% reduced their work hours. Caregivers forgo an average of $13,188 in
wages per year, making it more challenging to cover the costs of caregiving (Hurd et al., 2013).
Caregivers to persons whose income is above the limit of eligibility for public support programs,
like Medicaid home and community-based services, yet cannot afford private-pay services (i.e.,
“the forgotten middle”), are an especially vulnerable group (Pearson et al., 2019).
48
Caregivers must also weigh opportunity costs when deciding between continuing paid
employment and providing unpaid care to a family member. Besides the immediate impact of
out-of-pocket costs and lost income, caregivers who forgo employment income may compromise
eligibility for public programs critical for economic security in later life, including Social
Security (MetLife Mature Market Institute, 2011). Further, re-entering the job market may be
difficult, especially in technical fields where job skills evolve constantly (Weisshaar, 2018).
Despite this, particularly among older adults, the desire to pursue emotionally meaningful goals
in the present, such as caring for a person living with dementia, may outweigh concerns for
financial benefit maximization in the present and future (Carstensen, 2021; Strough et al., 2020).
Managing caregiving costs can also exert a psychological toll on caregivers. Caregiver
financial strain is associated with a lower quality of life, increased caregiver burden and
depression, role overload, and overall worse physical and mental health (Andren & Elmstahl,
2007; Lai, 2012; Liu et al., 2019; Nam, 2016; Pinquart & Sörensen, 2007; Sun et al., 2009).
Caregivers who experience greater role strain are more likely to place homebound care recipients
into skilled nursing facilities (Spillman & Long, 2009). The COVID-19 pandemic exacerbated
the financial strain experienced by family caregivers, leading to wider disparities between
caregivers and non-caregivers (Beach et al., 2021; Boyd et al., 2022).
There are also important differences in the costs of care according to caregiver ethnicity.
Caregivers, overall, spend an average of 26% of their annual household income on caregiving.
Latino caregivers, however, spend 47% of their average annual household income, about
$11,293, on caregiving expenses (Skufca & Rainville, 2021). The reasons for the higher out-ofpocket costs of care for Latino caregivers have received little research attention and are not well
understood. One explanation is the cultural value familialism (Mendez-Luck & Anthony, 2016;
49
Scharlach et al., 2006). This belief, deep-rooted in tradition, reflects the preference among many
Latino families to provide care in the community rather than a nursing home. Providing care at
home may result in more out-of-pocket costs for items that may otherwise be covered by
Medicaid in facility-based care (e.g., hygiene products). A preference to provide care within the
family may also explain why Latino caregivers are relatively invisible to the public eye since
Latino caregivers may be less likely to use formal care services (Cruz-Saco & López-Anuarbe,
2016).
Latino caregivers, on average, provide more intensive levels of care when compared to
non-Latino caregivers (AARP & NAC, 2020). To provide the high-intensity care that persons
living with dementia require, Latino caregivers spend approximately $2,000 more on household
items (e.g., home modifications) and on education, legal, and travel expenses (e.g., retrofitting
vehicles to accommodate wheelchairs) per year than non-Latino caregivers (Rainville et al.,
2016). Predictably, when asked about community resource priorities, Mexican American
caregivers identify financial resources and planning as a higher priority than non-Latino white
caregivers (Mehdipanah et al., 2021).
The Current Study
Few interventions exist to help caregivers manage financial hardship, and few of the
existing programs are tailored to the needs of Latino families. Most caregiver interventions for
those taking care of persons living with dementia focus on stress management and reduction of
caregiver burden related to behavioral symptoms of dementia (National Academies of Sciences,
2021). A recent scoping review of medical financial hardship interventions found that none
lowered out-of-pocket costs. However, this study did not focus on family caregivers to persons
living with dementia (Patel et al., 2021).
50
The initial purpose of the present study was to inform the development of interventions
aimed at reducing high out-of-pocket costs and promoting financial well-being amongst Latino
caregivers of persons living with dementia. Using a culturally tailored approach, guided by a
community advisory council of Latino caregivers and professionals from the Latino community
versed in family caregiving (e.g., older adult services program director), we conducted
qualitative interviews designed to enhance our understanding of the lived experiences of Latino
caregivers covering the out-of-pocket costs of caregiving.
The present study extends beyond the study’s initial purpose to reach more general aims
to better understand Latino caregivers’ out-of-pocket spending on costs associated with care. Our
goals were twofold: first, to better understand why this group spends more money proportionate
to their income on care-related costs than the average non-Latino caregiver, and second, how
these out-of-pocket expenses affect Latino caregivers and their families. We sought to better
identify how to develop individual and policy responses to address potential inequities affecting
Latino families who provide care for a person living with dementia. Qualitative work is
appropriate at this stage of research, as there is minimal knowledge about Latino caregivers’
experiences in covering out-of-pocket caregiving costs. We focused on Latino caregivers
because (1) they spend a higher proportion of their income on caregiving expenses relative to
non-Latino caregivers, and (2) given a projected eight-fold growth in the number of Latinos
living with dementia in the U.S. by 2060 (Wu et al., 2016), individual and policy interventions to
address the high costs associated with caregiving should be tailored to fit the needs of Latino
caregivers.
51
Methods
Study Design
To better understand caregivers’ financial well-being while caring for a family member
living with dementia, we conducted one-time, semi-structured, in-depth qualitative interviews
with Latino caregivers. Interviews were held via Zoom and were approximately one hour in
length. Following recommendations from Baker and Edwards (2012), we aimed to interview at
least 12 caregivers. The study design (interview guide, coding, and interpretation) was informed
by the Tucker-Seeley and Thorpe (2019) Material-Psychosocial-Behavioral Conceptual Model of
Financial Hardship (Tucker-Seeley & Thorpe, 2019), and is further described below.
Data Collection
Interview Guide. We developed a draft interview guide informed by literature on
common out-of-pocket caregiving costs (e.g., home modifications and medical expenses)
(Skufca & Rainville, 2021). To help us organize the complex experiences of caregivers
managing out-of-pocket costs of care, we integrated a material-psychosocial-behavioral
conceptual model of financial hardship (Tucker-Seeley & Thorpe, 2019) into the interview
guide.
According to this model, financial hardship is comprised of material, psychosocial, and
behavioral components. Material hardship includes out-of-pocket costs, reduced/lost income, and
lack of financial resources. Feelings of distress due to care costs and worry about managing such
expenses fall into the psychosocial component; behavioral hardship includes making financial
adjustments, delaying one’s own healthcare, and altering spending/consumption patterns. The
components of financial hardship are multidirectional, and concepts across all three may impact
one’s responses in managing their finances.
52
The research team reviewed the interview guide with the program’s community advisory
council over two, 1.5-hour meetings. An abbreviated version of the interview guide can be found
in Table 3.1.
Eligibility. Eligibility criteria were Latino/Latina/Latinx ethnicity, English or Spanishspeaking, currently providing unpaid care to a person living with dementia for at least 4 hours
per week on average, and assisting with at least one activity of daily living or two instrumental
activities of daily living.
Participant Recruitment. We recruited a purposeful sample of fourteen Latino
caregivers living in California (n=7) or Texas (n=7) through services and programs offered in the
area, including community organizations, newsletters, social media, educational events, and
email invitations. Recruitment occurred in two large, urban areas. Caregivers could complete
interviews alone, or if preferred, with another family member involved in care (Table 3.2). For
context, the service environment the communities in California and Texas were similar, and
included caregiver respite, education, and information and referrals provided by community nonprofit organizations, local government, and Medicaid. Key differences between the two
recruitment areas included greater availability of Medicaid home and community-based services
in California, due to lower eligibility criteria, and the presence of a formal caregiver resource
network in California.
Interviews. Interviews were held between June and December 2020. Due to COVID-19
restrictions, interviews were held remotely via Zoom. Verbal consent was obtained from each
participant by telephone prior to conducting the interview. Most interviews were approximately
60 minutes in length, with a range of 60-90 minutes. Participants received a $15 gift card for
their participation. A bilingual member of the research team, who was also a Latino caregiver,
53
conducted the interviews. All participants agreed to have their interviews recorded and then
transcribed. The interview guide was translated into Spanish prior to conducting Spanish
interviews, and the audio transcript was generated in Spanish and then translated into English
prior to analysis. Each transcript was reviewed by a Spanish-speaking member of the research
team to ensure accuracy.
Interviews were conducted and subsequently analyzed until no new themes nor codes
emerged, indicating thematic saturation (Guest et al., 2006). Saturation was met after the
completion of the ninth interview, as the following two interviews provided no new concepts.
The research team met to discuss findings and at this point agreed that data collection could be
stopped.
Data Analysis
We applied a thematic analytic approach, as described by (Braun & Clarke, 2006).
Thematic analysis is a flexible method that allows researchers to identify and analyze patterns or
themes within qualitative data. The steps, as outlined by Braun and Clarke (2006), provide a
general framework for conducting thematic analysis and offer guidance on the critical stages
involved in the process. Our approach was further guided by the Tucker-Seeley & Thorpe
conceptual model of financial hardship (Tucker-Seeley & Thorpe, 2019). Given the overlap
between domains (material, psychological, and behavioral), we applied the model so that text
excerpts could be coded within multiple domains (i.e., excerpts could be coded as both material
and psychosocial hardship). Two members of the research team coded the transcripts
independently using NVivo 12. Differences were resolved through discussion while
simultaneously updating the codebook. New codes were added as they were identified and
retroactively applied to earlier transcripts.
54
As initial coding exposed how culture affected caregivers’ experiences with out-ofpocket care costs, a second round of coding was done with a third coder with clinical and
academic expertise in Latino cultural values and caregiving experiences. This third coder
reviewed established codes and re-coded interviews based on her knowledge of Latino family
caregiving dynamics. The new layer of coding was conducted following the same process used
in the first round. An abbreviated codebook is available in Table 3.3.
Findings
Sample
A total of 11 interviews were conducted with 14 caregivers, as three primary caregivers
chose to complete their interview with a family member. The average age of the caregivers was
60 years, and the majority (71%) were female. Caregivers were either children/children-in-law or
spouses of the person living with dementia. Seven were based in California, and seven in Texas.
Only two caregivers were employed, the rest were either unemployed or retired. Additional
participant characteristics are summarized in Table 3.2.
Types of Out-of-Pocket Costs
Study participants described a wide-range of caregiving expenses paid for out-of-pocket.
Common healthcare costs included medical equipment (e.g., wheelchairs), co-pays from medical
appointments, and medications. Personal care costs were most likely spent on incontinence
equipment, grooming materials (e.g., wipes), and clothing. Food, home modifications,
transportation (e.g., travel to/from medical appointments, buying a larger car), and covering
utility bills, were household items caregivers mentioned spending the most on. There were other
costs less easy to categorize, such as legal aid, dietary supplements, and security systems. Two
categories of expenses we did not anticipate were interest fees from credit card and loan debt
used to cover caregiving expenses and lost income due to caregiving. Nearly half of caregivers
55
noted spending out-of-pocket for home care, such as personal care assistants to help manage the
older adult’s ADLs, although this cost was commonly the first to be cut, as other care costs could
not be curtailed as easily.
Themes
Findings revealed three themes: (1) making ends meet, (2) the psychological impact of
caregiving costs, and (3) frustration with accessing resources.
Theme 1: Making Ends Meet
The first theme characterizes different types of out-of-pocket costs incurred by caregiving
families and caregivers’ responses to address these. In the context of the material-psychosocialbehavioral model, this theme primarily reflects material costs of care and caregivers’ behavioral
responses to cover costs. Subthemes were: The Cumulative Costs of Day-to-Day Expenses and
Caregivers Sacrifice Financial Well-Being to Care Recipient Needs.
Subtheme 1: The Cumulative Costs of Day-to-Day Expenses. The first subtheme
describes the cumulative costs of daily expenses related to care. Although caregivers identified
several needed, but less frequent, high-cost expenses (e.g., modifying a bathroom to
accommodate mobility needs), the emphasis was on the pervasiveness of day-to-day costs: “It’s
clothing. It’s essential hygiene product. You know, glasses” (Participant 1). Although these items
often were required due to the care recipient’s health conditions, they were not covered by health
insurance (e.g., co-pays, vitamins, incontinence care).
Despite recognizing how these costs accumulate over time, most caregivers expressed a
reluctance to be reimbursed by the care recipient. “For years, I had done things for my mother
and not bothered to try and get reimbursed,” said one caregiver, “It’s not that it’s a bad thing. I
don’t mind those things. It’s just knowing that those things can add up” (Participant 1). Another
shared: “I don’t want him to pay me back. I’m not gonna say, ‘Oh, it was $16, just write me a
56
check’” (Participant 3). These quotes reveal caregivers’ discomfort seeking reimbursement and
preference to quietly absorb costs.
For adult children who provided care, non-reimbursable daily expenses were often
incurred as part of their effort to support the older person’s preference to remain in the
community rather than in a nursing facility, where costs for many items would be covered by
Medicaid (e.g., hygiene products, food). Whereas sharing household resources and costs were
normal for spousal caregivers, this was not the case for adult children – especially when
households were combined to avoid placement in a facility. “It’s taxing,” shared one caregiver,
“but you figure, it’s worth the cost of being at home” (Participant 3). Caregivers not only saw
these costs as worthwhile, but also as a way of showing respect for their parents:
I made a promise to myself that I would never put her in a home. She doesn’t deserve it,
after all she and my father did for us. It’s respectful for her to enjoy her last years on this
earth with family members or myself. (Participant 9)
Subtheme 2: Sacrificing Financial Well-Being to Meet Care Recipient Needs.
Caregivers described making sacrifices to cover caregiving costs, included spending their own
savings and incurring interest fees from financing the costs of care. Typically, when caregiving
expenses could not be avoided and needs were urgent, caregivers took out a loan or added to
their credit card debt.
I had to use my credit card since at that time I had a good score. [My bank] approved a
credit card for me which I was utilizing at the time, at times I got backed up with
payments, but I was managing somehow. I had to take out a loan from a private
institution that I was paying due to that situation. (Participant 11)
Relying on credit cards and loans may reflect limited savings due to fewer socioeconomic
opportunities.
It’s difficult to save unless you are a professional and have good roots in this country. For
Latinos like myself that work in service jobs it’s hard or those who work in fields – it’s
not possible for them to save because they get by with what they earn. (Participant 11)
57
Even among caregivers with savings, such as a retirement account, many described spending
down and having to turn to financing to make ends meet.
Besides taking on debt to cover costs, caregivers described sacrifices related to reduced
employment that made it more difficult to cover expenses. Although the caregiver’s decision to
leave the workforce or reduce hours was often not wholly a financial choice, several caregivers
felt it was the most economical option given the expense of home care.
Well, you know, I can’t go back to work. If I went back to work, I’d be making more
money. So wouldn’t be such a financial strap, but then to pay somebody to take care of
my mother, or my father, or both, even at one point, is difficult. (Participant 2a)
Several interviews revealed opportunity costs of trading-off paid employment for unpaid
caregiving, and the subsequent difficulty of re-entering the workforce.
The first cost, obviously, is that I stopped being a full-time employee … I was an
informal caregiver and not paid, so that was an opportunity cost right there … but you
can’t live. It’s not a living wage … I would never do caregiving again. I did it for my
mother, she was my mother. But you know, that’s one of the opportunity costs, that I’ve
lost my full-time job. (Participant 9).
Theme 2: The Psychological Impact of Caregiving Costs
The second theme, which relates primarily to the psychosocial costs of the materialpsychosocial-behavioral model characterizes the impact that out-of-pocket costs of caregiving
have on caregiver well-being, including financial strain, distress, worry, and relative deprivation.
There were three subthemes: Perceived Effect of Caregiving Costs on Mental and Physical
Health, Caregivers’ Worries About the Future, and Pressure of Social Role Expectations.
58
Subtheme 1: Perceived Effect of Caregiving Costs on Mental and Physical Health.
Feelings of financial distress were prominent and included caregivers’ descriptions of how worry
over finances negatively affected their health. “The finances, it keeps me awake at night.
Stressing and worrying about how I’m going to manage that aspect” (Participant 6). Another
caregiver said:
Thinking about how you are going to pay for something can mentally drain you and
deeply affect you. Finances can be clear but the hidden thing about them is that if you are
struggling with them, they will impact you mentally and physically. (Participant 11)
Subtheme 2: Worries About the Future. Caregivers’ financial stress often stemmed
from worries about the future in two areas: their own long-term financial well-being and worry
about increased costs of care as care needs intensified due to disease progression. “I don’t know
what’s gonna happen once my savings are depleted” (Participant 8).
Although most comments about future financial well-being concerned an individual’s
ability to cover expenses and live comfortably in retirement, one caregiver pointed out the
intergenerational impact of caregiving on finances. Discussing the lasting impacts on her family,
she describes how caring for her mother undermines her ability to provide support to her
daughter.
I worry that the spending for my mother will greatly impact our ability to care for
ourselves, or how much we’ll be able to assist my daughter. Yeah, that’s, that’s, that’s the
big financial burden for us is, is what’s to come? And how do we handle it? And so,
trying to mitigate costs now and trying to kind of control them now is, is the priority.
(Participant 1)
The caregiver quoted above also points to the anxiety that accompanies uncertainty around
caregiving expenses (“what’s to come?”). Without knowing what expenses there will be in the
future, caregivers tried to curb present spending as much as possible. “I have to advance in my
budgeting,” shared one caregiver referring to how she managed this uncertainty, “and I have to
borrow money to cover any emergency or costs” (Participant 7).
59
The anxiety produced by the unknown costs of caregiving were most acutely felt around
the topic of long-term care expenses. While exact costs were unknown, many families expressed
concern about care costs as the disease progressed. “And, you know, financially, she’s had it for
five years, you don’t know how long you’re gonna have” (Participant 4a). A feeling of
impending financial doom was expressed in several interviews, where caregivers anticipated
costs would increase exponentially when the care recipient required nursing home care. “And
that day, we’re gonna have to make a really tough decision to put her somewhere. And it’s
expensive. Let’s face it, $5,000 or $6,000 a month. Where do you get that money?” (Participant
10). Another caregiver shared her concern about being able to remain in her home because of the
cost of her husband’s care.
Because of what’s coming, it makes it tough. It limits and is constant worry. Will I be
able to make it for both of us? Will I be able to stay here at the house? Will I have to sell
the house to provide for him, to meet the extra expenses? (Participant 6)
Subtheme 3: Pressure of Social Role Expectations. The third subtheme illustrates the
pressure caregivers felt due to social role expectations around caregiving, and the toll this took
on mental health. Women caregivers indicated this role was expected from them, especially if
they were the oldest daughter. “As a Hispanic oldest daughter, caregiving is seen as an
automatic” (Participant 10), said one caregiver. “And people expect you to do it,” shared another,
“Because you’re either the female or you’re the family member who’s not working so you must
have extra time to care for people” (Participant 3). At the same time, some women felt that
pressure to be the primary caregiver was internal rather than coming from others in the family: “I
thought, well, this is my responsibility, my mother, and it’s hard to get through this” (Participant
9). Such comments suggest that cultural expectations relegate financial considerations to a
second priority, even when caregiving included financial stressors.
60
Whereas women appeared obligated to provide direct care at any cost, one male caregiver
gave another perspective on stressful gendered role expectations: “As head of the family I should
be able to provide and not worry about having enough for rent, paying bills, food, or buying
clothes” (Participant 11). Caregiving, however, made it difficult for him to fulfill this role.
Notably, it was not only men who felt pressure to provide for their family. A woman who cared
for her husband described expectations she initially placed of herself. “I can do it,” she said of
her initial attitude, “I’m macho woman, you know, I can take care of it” (Participant 6).
Theme 3: Frustration with Accessing Resources
The third theme describes the experience of caregivers trying to access resources to
financially support their caregiving role. Resources include formal support, such as from
government agencies and local providers, as well as informal support from families. This theme
intersects all parts of the material-psychosocial-behavioral model. There were three subthemes:
Disappointment with Identified Resources, Not Knowing That Resources Exist or How to Access,
and Family Could Not Be Relied Upon to Help Cover Care Costs.
Subtheme 1: Disappointment with Identified Resources. Every caregiver interviewed
described wanting to access community-based financial support resources that could displace
some caregiving costs, yet when they tried to do this, many described feelings of being let down.
“I did call [local Area Agency on Aging], to see if they could help me, and what they said was
available didn’t work. Everybody says, ‘Call them, call them’ and but when I call them, I’m not
getting a whole lot of information or assistance” (Participant 1). Caregivers referenced multiple
reasons for their disappointment, including lengthy administrative processes, being offered
services that did not meet their needs (e.g., services not available in the caregiver’s geographic
region), and being ignored by service providers after reaching out. Caregivers were left with a
sense that, although resources to reduce care costs may exist on paper or in web searches, these
61
resources were not actually available: “I spend many hours on the internet, trying to find it.
Because nobody knows. It said that there [are] resources, but they’re not there” (Participant 10).
Another challenge was eligibility related to the “donut hole,” or a “blackhole,” as one
caregiver called it: “They’ve given me great agencies, but when I look, they are not in our area,
or we don’t qualify. My parents fall in that little black hole” (Participant 10). This term describes
situations where caregivers had too few resources to comfortably afford the costs of caregiving
and too many to be eligible for financial assistance in their state. This was brought up in nearly
every interview and primarily related to the caregiver’s ability to access Medicaid nursing homes
and home- and community-based supports for the care recipient. Medicaid eligibility requires
that recipients meet the criteria for being considered low-income in their state.
For many older adults who are not eligible for Medicaid long-term supports and services,
the high costs of care results in them “spending down” assets and becoming eligible. As one
caregiver put it: “What happens is, the middle class has to go into poverty before any help is
provided” (Participant 4). To many, this appeared unfair and ill-suited for their needs, “So, what
kind of help is that? You know, that’s not that’s not the kind of help we need” (Participant 5a).
This concept was shared across interviews, and consistently highlighted as a middle-class issue.
To cover the expenses, I had to withdraw monthly from my own retirement savings until
my savings get depleted to be able to qualify for any type of medical assistance. Maybe
being the middle-class, caregiver, Latina, we have to struggle more for to get assistance
from agencies because we don’t meet the criteria to qualify for MediCal benefits
(Participant 8).
Subtheme 2: Not Knowing that Resources Exist or How to Access. We asked
caregivers whether they ever hesitated to access community-based resources to help with the
costs of care. Most caregivers shared that they did not hesitate to try to access resources. Rather,
caregivers did not know how to access resources. “I have not really avoided seeking out
resources, to be honest, I don’t know where to access those resources” (Participant 7).
62
Most caregivers explained that it took time to learn the resource environment, which was
difficult to navigate, and sometimes was not worth the time and effort. “I’m sure there’s a lot of
help out there. But, you know, we’d have to spend hours and hours on the internet trying to
figure that out” (Participant 5b). Another caregiver shared, “Why should I invest my energy in
something, if it’s going to be a no?” (Participant 10).
Still, a few participants suggested that caregivers should keep looking for financial help.
“I would say knowledge is power. So, you know, educate yourself with programs, workshops,
seminars that are available”, said one caregiver (Participant 8). Another echoed this advice: “So,
I think the biggest advice is you need to go find . . . what outside resources they are. Financial
help, you know, whatever it is” (Participant 5a).
Subtheme 3: Family Could Not Be Relied Upon to Help Cover Care Costs. Many
caregivers also expressed frustration with lack of help from family and described the futility of
asking for help. “No, family hardly ever contributed. It was just my money,” (Participant 9).
Eventually, caregivers stopped asking for help from family: “You know, I’m not going to
continue with that, because everyone is well aware. And I’m not going to keep badgering people
for it. Because, honestly, I don’t have the time” (Participant 2b). Another deterrent for asking for
financial help from family was that caregivers felt like “it should naturally come from them”
(Participant 7). This suggests that financial support from family is not only dependent on the
family’s willingness to provide support when asked, but also that family members anticipate the
need and offer support without being asked. A related issue was that caregivers believed that
their family members did not have the resources to help.
Yeah, like I shared before, most of my family live in another part of the world. . . And
you know, as far as we know, the Latino families, they’re going through their own
struggles, most of them live from paycheck to paycheck. (Participant 8)
63
Discussion
The purpose of this study was to gain insights into the lived experiences of Latino
caregivers in the U.S., focusing on how they handle out-of-pocket expenses while caring for
individuals with dementia, with the aim of identifying and addressing their specific needs.
Findings showed that Latino caregivers compromise their own financial well-being to provide
care. While this finding likely also applies to many non-Latino caregivers in the U.S., it is
particularly relevant among Latino caregivers given the disproportionately high out-of-pocket
costs of care experienced by this population. This suggests that Latino caregivers would likely
benefit from financial support to help manage the material and psychosocial effects of financial
hardship and that current program and policy-level responses may not meet the needs of Latino
family caregivers. Although findings are based on a sample of U.S. caregivers, they may apply to
other socioeconomically vulnerable caregivers globally since caregiving contexts shape the costs
and consequences of caregiving.
Application of the material-psychosocial-behavioral model of financial hardship in this
analysis demonstrated that financial hardships were complex and overlapping (Tucker-Seeley &
Thorpe, 2019). For example, caregivers described how the many day-to-day caregiving expenses
not covered by health insurance accumulated over time, often leading to significant opportunity
costs as they had to forego other financial priorities or personal expenditures. This took a
psychological toll on caregivers who worried about the high costs of care. However, caregivers
typically did not ask for payment from the care recipient. Table 3.4 summarizes several of the
main financial hardships’ caregivers described, broken into their material, psychosocial, and
behavioral components.
It is notable that cultural norms about providing care and many caregivers’ internal sense
of responsibility contributed to their shouldering much of the financial costs of care. As
64
described by several participants, there is a cultural expectation to provide care out of obligation
and out of love (Martinez & Acosta Gonzalez, 2022; Mendez-Luck & Anthony, 2016). The
organization of the current long-term support and services systems, where families assume more
costs when they assume a direct care role in the community, may exploit Latino families’
cultural expectations, like the preference to provide care in the community.
Despite common conceptions that the cultural value of familialism means that Latino
caregivers have more informal support available, most caregivers indicated they did not ask
family for financial help. Many indicated that they absorb the care recipient’s daily expenses, in
part, due to a reluctance to seek repayment from the care recipient. These caregivers avoid
asking their care recipient or other family members for help, and formal services are insufficient
or difficult to navigate. Findings suggest that service organizations and policymakers need more
nuanced information in terms of the experiences of Latino caregivers to avoid stereotypes that
families “look after their own” for necessary resources to cover the costs of care (Willis et al.,
2015).
Implications
Individual Intervention. Few studies address how to help caregivers manage and lower
out-of-pocket costs of care, highlighting the need for conceptually driven intervention programs
(Patel et al., 2021). This study’s use of the material-psychosocial-behavioral model offers a
helpful framework that can be replicated in future studies investigating financial hardship
experienced by caregivers in the U.S. and globally. Our interview findings suggest that the
model fits caregivers’ experiences and offers a promising framework to guide intervention
content. For example, out-of-pocket costs of care have material, psychosocial, and behavioral
implications; rather than addressing financial concerns alone in an intervention, it would be
important to also integrate stress management content pertaining to financial strain.
65
Financial decisions are also personal decisions; interventions must acknowledge the role
of caregivers’ preferences and cultural values that impact financial decisions. We recognize that
financial decisions related to caregiving are personally guided by sociocultural influences, such
as the choice of whether to leave employment to provide care. Thus, interventions should help
provide guidance so caregivers can make informed choices given their unique personal desires
and cultural norms and values.
Lastly, interventions should help caregivers navigate community and healthcare resources
to help displace some of the out-of-pocket costs of caregiving. Our findings suggest that
perceived hesitation to use community resources may be due to caregivers’ previous negative
experiences with community agencies, rather than simply an unwillingness to seek help, and
familialism may act as a barrier in the utilization of home- and community-based services due to
cultural norms and expectations (Cruz-Saco & López-Anuarbe, 2016; Martinez et al., 2022).
Policy Intervention. At a societal- and policy-level, our results reinforce previous
findings suggesting long-term care payment systems in the U.S. are often inadequate to support
the needs of families who provide care. Caregivers in our study described paying for a wide
range of services and materials needed because of the care recipient’s chronic health condition
which was not covered by health insurers. Although participants did not seem to have eligibility
for Medicaid and other services wn among our participants, it is possible that a family’s financial
support produces a paradoxical scenario, wherein caregivers who choose to care for a person
living with dementia in the community may prevent “spending down” of the care recipient’s
assets to become eligible for Medicaid services.
Limitations
Caregivers were recruited primarily from two service organizations in California and
Texas, and thus reflect experiences of caregivers who accessed services creating a possible
66
selection bias. Still, by selecting caregivers from California and Texas, we were able to include
caregivers from multiple policy contexts within the U.S. Further, although caregivers described
their challenging experiences accessing resources prior to accessing services, interviews were
conducted during the COVID-19 pandemic, such that many caregivers encountered unusual
financial circumstances that both negatively and positively affected them, such as widespread
layoffs, greater availability of work-from-home, and stimulus checks. It is challenging to
disentangle the effects of COVID-19 from caregivers’ usual experiences of financial hardship.
Prior societal-level disruptions affecting financial well-being (e.g., the Great Recession of 2008;
Meyer et al., 2021), suggest the possibility that professionals should be prepared with knowledge
of caregivers’ experiences of financial hardship during “abnormal” periods.
Future Research
Future studies should consider building upon these qualitative findings to inform
quantitative survey research to better draw comparisons (1) among Latino caregivers and (2)
between Latino and non-Latino caregivers to better understand differences and similarities. This
would help to understand intersecting factors that create a multitude of experiences of financial
hardship amongst Latinos, such as gender, caregiver relationship (i.e., spouse/spouse,
child/parent), baseline income level prior to caregiving, nativity, and disease progression.
Comparisons between Latinos and non-Latinos could help researchers identify causal factors for
the disproportionately high out-of-pocket costs of care encountered by Latino caregivers.
Conclusion
Given the projected increase in the proportion of older Latinos and related increases in
those living with dementia in the next four decades and a preference to give and receive care
within the home, it is imperative to address the disproportionately high out-of-pocket care costs
incurred by Latino families with culturally tailored interventions. Findings suggest that
67
preference by Latino families to keep a care recipient in the home may be met with financial
disadvantage due to the high out-of-pocket costs of care. Interventions at the individual and
policy level must consider these cultural norms to ensure more equitable financial outcomes for
Latino families.
68
Table 3.1 Abbreviated Interview Guide
• Since you began to provide care for your family member, what kinds of purchases did
you need to make related to caregiving?
• What kinds of costs do you cover using your own money versus your family member’s money, who you are helping?
• What challenges have you had when trying to cover caregiving expenses? How has
COVID-19 affected this?
• How has your employment been affected by assisting your family member, if at all?
• Where do you find information on resources?
• Did you ever access community or other formal sources of financial support to help
cover caregiving costs?
• Did you ever avoid seeking out or accessing community resources to cover the costs
of caregiving, and, if yes, why is that?
• Did you ever ask for help, from other family or friends to cover caregiving costs, or to
help ease financial burden? If so, what was your experience like?
• What are your concerns for your ability to retire or live comfortably in retirement?
Are these the same as before you began to provide assistance to your family member?
• Is there anything that we haven’t asked you about that you think we should know?
69
Table 3.2 Participant Demographics
Note: If two caregivers were included, then a and b are used to show the dyad.
Participant State Age
(Years) Gender Hours of
Care/Week Language Relationship to
Care Receiver
Years
Caregiving
Employment
Status Education 1 TX 47 F 144 English Child 1 to 2 Unemployed Post-graduate
2a CA 58 F 90 English Child 2 to 5 Unemployed Some college
2b CA - M - English Spouse 2 to 5 - - 3 TX 60 F 8 English Child < 1 Retired Post-graduate
4a TX 58 F 20 English Child 2 to 5 Full-time College graduate
4b TX - M 168 English Spouse 5+ Retired High School
5a TX 63 F 168 English Daughter-in-law 2 to 5 Retired College graduate
5b TX - M 20 English N/A 2 to 5 Unemployed - 6 TX 65 F 168 English Spouse 5+ - - 7 CA 60 F 168 Spanish Child 5+ Part-time College graduate 8 CA 71 F 70 English Spouse 5+ Retired College graduate 9 CA 60 F 168 English Child 5+ Unemployed College graduate
10 CA 51 F 70 English Child 5+ Unemployed Some college
11 CA 65 M 72 Spanish Spouse 1 to 2 Unemployed College graduate
70
Table 3.3 CONFIDENCE Interviews Codebook
Code Definition
Material Cost Examples
Food Caregiver pays for food, e.g., groceries, for the care recipient
Home modification
and repair
Caregiver pays for home modification for their own or the care
recipient’s dwelling, such as grab bars, ramps, door widening
Behavioral Reponses Examples
Form of payment
Credit card Caregiver pays for the cost of care using personal credit card(s)
Loan Caregiver pays for caregiving costs by taking out a personal loan
Making ends meet
Asking for reprieve on
payments
Caregiver asks for a reprieve on payments due, such as from credit
card or loan companies
Asking friends and
family for assistance
Caregiver asks family and friends for assistance to cover
caregiving costs, and/or receives assistance from family and
friends
Accessing public
assistance programs
Caregiver accesses (or tries) to access a public assistance program
to cover the costs of care
Psychological Impact Example
Worry about own
future
Caregiver expresses worry, anxiety, or fear about their own
financial security in the future
Worry about paying
for care in the future
Caregiver expresses worry, anxiety, or fear about paying for
caregiving expenses in the future for the care recipient
Effects of COVID-19
Stimulus Caregiver reports that the stimulus payment received during
COVID-19 pandemic affected their financial situation
Unemployment
benefits
Caregiver reports receiving unemployment benefits, both
traditional and enhanced, during the COVID-19 pandemic
Relevance of Latino Culture
It’s not burden Caregiver indicates that caregiving, despite financial costs, is not a
burden and is, at times, a positive experience
Marianismo
Caregiver describes a sense of duty to provide care due to her
gender; while fulfilling this duty, there is also sense of suffering,
where care responsibilities are “put upon” the caregiver
Familial obligation Caregiver describes providing care because of a sense of
obligation to their family (familialism)
71
Table 3.4 Application of Material-Psychological-Behavioral Model to Latino Dementia
Caregivers’ Out-of-Pocket Costs
Financial
Hardship
Type
Material Example
Quote Psychological Example
Quote Behavioral Example
Quote
Using
personal
savings to
cover daily
costs
Day-to-day
expenses of
caregiving
added up
over time,
especially
for those
living with
care
recipients.
Many
times, costs
were not
covered by
health
insurers,
despite
arising
from care
recipient
health
conditions.
“It’s
clothing.
It’s
essential
hygiene
product.
You know,
glasses.”
Caregivers
reported a
sense of
responsibility
to provide care
in their home
and to take on
additional
costs this
entailed. While
described as a
choice done
out of love,
there was a
sense of
pressure to
meet role
expectations.
“It’s about
loving your
family
member,
no matter
what
situation
they’re
in…I’ve
forfeited
my
savings.”
Caregivers
absorbed the
cost of care
and did not
ask for
payment
from the care
recipient. In
some cases,
caregivers
took on costs
to reduce
stress to the
care
recipient.
“I do
bargain
shop when
it comes to
my dad
because I
don’t want
him to pay
me back.”
Sense of
urgency
Caregivers
faced
urgent and
unexpected
costs that
were
difficult to
avoid.
Caregivers
with
limited
savings
may incur
interest fees
when
needing to
finance
these
expenses to
meet
immediate
needs.
“Um, you
know, we
put it on
our credit
card and
make
payments,
you
know?”
Caregivers
expressed
concerns about
running out of
savings and
accumulating
debt to cover
care expenses.
The
unpredictable
costs of care
and
uncertainty of
how long
caregiving
would last
added to
caregivers’
stress.
“I don’t
know
what’s
gonna
happen
once my
savings are
depleted.”
Caregivers
often spent
from their
own savings
to cover
unexpected
care costs.
Once savings
were
exhausted,
caregivers
turned to
financing
options such
as loans and
credit cards.
“I had to
use my
credit
card… I got
backed up
with
payments…
I had to
take out a
loan from a
private
institution
due to that”
72
Future care
costs
Caregivers
anticipated
care needs
would
intensify
such that
paying
institutional
care would
eventually
be required.
“And that
day, we’re
gonna have
to make a
really tough
decision to
put her
somewhere.
And it’s,
it’s
expensive.”
Caregivers
worried about
the high costs
of nursing
home care,
which they
anticipated
would cost
thousands of
dollars per
month.
“Let’s face
it, $5,00 or
$6,000 a
month.
Where do
you get
their
money?”
In
anticipation
of future
costs,
caregivers
tried to cut
back on
expenses and
lower current
expenditures.
“We tried
to limit and
meet within
our
monthly
income and
not touch
our reserve
money.
That
reserve
money is
for him for
when I will
no longer
be able to
take care of
him myself
and will be
forced to
put him in
memory
care.”
Disruption
in
employment
and career
trajectory
Many
caregivers
had a
limited
income to
cover care
costs due to
leaving the
workforce
or reducing
hours.
“The first
cost,
obviously,
is that I
stopped
being a
full-time
employee.”
Caregivers
worried about
their long-term
prospects of
being able to
re-enter the
workforce
when care
ends.
“It’s a
process
coming out
of a
caregiving
situation
and it’s
hard
finding
another job
or finding
another
way to
earn
wages.”
Caregivers
ended
employment
due to a
preference to
provide
direct care
and/or
because paid
care options
were too
expensive.
“Well, you
know, I
can’t go
back to
work. If I
went back
to work, I’d
be making
more
money. So
wouldn’t be
such a
financial
strap, but
then to pay
somebody
to take care
of my
mother, or
my father,
or both,
even at one
point, is
difficult.”
Challenges
in accessing
resources
Caregivers
experienced
multiple
challenges
“I did call
[local Area
Agency on
Aging], to
Caregivers
expressed
frustration
with accessing
“They’ve
given me
great
agencies,
When
frustrated by
their
experiences,
“Why
should I
invest my
energy in
73
when trying
to access
community
resources
that might
otherwise
displace
out-ofpocket
costs,
including
1) not
knowing
where to
find
resources
and 2)
barriers
such as
limited
eligibility
criteria.
see if they
could help
me, and
what they
said was
available
didn’t
work.
Everybody
says, ‘Call
them, call
them’ and
but when I
call them,
I’m not
getting a
whole lot
of
information
or
assistance”
community
resources, as
well as
disappointmen
t with
eligibility
requirements
to “spend
down” the care
recipient’s
resources to
access
Medicaid.
but when I
look, they
are not in
our area, or
we don’t
qualify.
My parents
fall in that
little black
hole”
some
caregivers
would avoid
seeking
community
resources.
Other
caregivers
who
persisted and
were
successful at
accessing
reduced-cost
services and
advised other
caregivers to
do the same.
something,
if it’s going
to be a no?”
Role
expectations
Caregivers
were often
“on their
own” to
cover costs,
such as
when other
family
members
expected
caregivers
to provide
care,
especially
oldest
daughters.
Other
family
members
often
refused to
pitch in to
cover costs
when/if
asked.
“I know
I’m not
going to get
support for
my sister.
No, it’s not
gonna
happen.
They’re
selfish, I
guess.”
Caregivers felt
pressure from
role
expectations to
provide care,
such as to
fulfill the role
of a
“breadwinner”
or the oldest
daughter.
Consequently,
caregivers
sometimes felt
alone in this
role.
“The
Hispanic
oldest
daughter is
seen as an
automatic.”
Caregivers
stopped
asking
family
members for
help.
“You
know, I’m
not going to
continue
with that,
because
everyone is
well aware.
And I’m
not going to
keep
badgering
people for
it. Because,
honestly, I
don’t have
the time”
74
CHAPTER IV: ACCEPTABILITY OF THE CONFIDENCE INTERVENTION:
RESULTS FROM SATISFACTION SURVEY AND QUALITATIVE INTERVIEWS
Overview
Background and Objectives: Latino caregivers typically spend nearly twice as much of
their annual household income on caregiving expenses compared to non-Latino caregivers. The
Confidently Navigating Financial Decisions and Enhancing Financial Wellbeing in Dementia
Caregiving (CONFIDENCE) program, a web-based, culturally-tailored financial education
intervention, aimed to reduce expenses and financial stress among Latino caregivers. A crucial
aspect of this program was its acceptability to end-users, including its perceived value.
Research Design and Methods: We used a multi-method approach guided by Sekhon’s
Theoretical Framework of Acceptability. Thematic analysis of 14 semi-structured qualitative
interviews and descriptive analysis of 21 satisfaction survey responses were used to evaluate
acceptability.
Results: Themes identified from the interviews were: perceived need for financial
intervention, perceived effectiveness of the intervention, positive responses to participation, and
recommendations to improve the intervention. Caregivers appreciated the self-paced format and
the group setting, which allowed for interaction and learning from fellow caregivers. Survey
results indicated high satisfaction, with participants praising the program’s trustworthy and
relevant content.
Discussion and Implications: Caregivers viewed CONFIDENCE positively and reported
benefits in managing finances and financial stress. Although most caregivers said participation
required minimal effort, some noted challenges such as time constraints and scheduling conflicts.
Considering the significant economic burdens faced by Latino caregivers, it is vital to develop
and support interventions tailored to their unique needs.
75
Introduction
Overview
In the U.S., informal family caregivers provide critical support to older adults living with
chronic illness and disability. However, they often bear the brunt of economic and emotional
strain frequently overlooked by society. Of the nearly 2% of the GDP covering long-term care,
informal caregiving accounts for over one-third (Gruber & McGarry, 2023). Caregivers of
persons living with dementia experience substantial out-of-pocket expenses due to frequent
medical appointments, necessary home modifications, specialized caregiving supplies, ongoing
personal care services, and home care that are not covered by insurance, precipitating farreaching economic and psychological consequences, including financial strain and anxiety
(Broadaty & Donkin, 2009; Skufca & Rainville, 2021). Financial insecurity can have immediate
and long-term effects on caregivers’ ability to meet basic needs, career development,
generational wealth, and overall well-being (Templeman et al., 2020). Many caregivers deplete
retirement savings or accumulate debt to manage caregiving costs (NAC & AARP, 2020). Such
financial burden is particularly evident among under-resourced populations disproportionately
impacted by dementia, including Hispanic and Latino populations (herein, Latino) (Kalipeni &
Kashen, 2022).
Financial Burden and Latino Caregivers
Latinos comprise 19% of the U.S. population. Approximately 35% experience material
hardship and financial difficulties (U.S. Census Bureau, 2021). Recent studies suggest that
Latino caregivers may be particularly prone to financial burdens related to caregiving. For
example, while the average caregiver spends 26% of their annual household income on
caregiving, Latino caregivers spend nearly double (47%) (Skufca & Rainville, 2021). Despite
opting for the most affordable healthcare options, like adult day care, as opposed to formal care
76
services, like nursing facilities, and placing a heavy reliance on informal care, the total costs
Latino families of persons living with dementia spend is growing faster than non-Latino families
(Wu et al., 2016). While caregivers under greater strain are more likely to consider skilled
nursing facility placement (Spillman & Long, 2009), Latino caregivers, who provide a higher
intensity of care on average (Rote & Moon, 2018), are historically less likely to choose this
option. Familial obligation and beliefs about inadequate care in facilities (Jaldin et al., 2023),
contribute to a preference to provide care in the community and in multigenerational households
(Landale et al., 2006).
The reasons behind higher spending by Latino caregivers remain unclear. Cultural values,
like familialism (i.e., prioritizing the family’s welfare over individual desires), may influence
spending patterns (Adames et al., 2014; Jaldin et al., 2023; Mage et al., 2023). The preference for
cohabitation, along with the influence of cultural values, may also contribute to Latino families
shouldering additional caregiving costs (e.g., paying for household groceries, hygiene products).
High familialism can also contribute to career compromises that may reduce potential earnings,
such as when a caregiver provides direct care rather than using formal care services (Jaldin et al.,
2023). Consequently, a larger share of Latino family members’ income may be devoted to
caregiving expenses. Cultural values regarding gender roles, e.g., marianismo—the
characterization of women as family-centered and selfless, may also influence Latino caregiving
experiences (Mendez-Luck & Anthony, 2016; Jaldin et al., 2023). Cultural values regarding
gender roles may also contribute to reduced household income by prioritizing unpaid care roles
over paid labor force participation. Thus, understanding Latino cultural values and norms is
critical in addressing caregiving needs and developing support programs, particularly focused on
financial well-being.
77
In addition to cultural factors, structural factors can contribute to the financial impacts of
caregiving among Latinos in the U.S. The significant wealth gap in the U.S., in which Latinos
have considerably lower generational wealth than the general U.S. population, exacerbates the
challenges in dementia care and contributes to spending a higher proportion of income on
caregiving among Latino caregivers. In 2020, the median net worth of Latino households was
$52,190—compared to a median income of $195,600 for non-Latino households (U.S. Census
Bureau, 2021). This financial situation, marked by a lack of wealth transfer across generations,
emphasizes the profound impact of economic disparities on the Latino community (Campbell &
Kaufman, 2006). Consequently, when a Latino caregiver encounters an unexpected cost, it can
severely strain their financial resources, leading to increased stress and potentially compromising
the quality of care they can provide.
Financial Strain Interventions for Caregivers
Despite research highlighting significant financial challenges for caregivers of older
adults, there is a notable gap in intervention studies addressing this topic (Zhu et al., 2015). More
recently, the National Strategy to Support Family Caregivers identified strengthening the
financial security of caregivers as a top priority (ACL, 2022). Proper training can significantly
improve caregivers’ well-being and potentially reduce their care recipient’s need for services
(Nuckols et al. (2017). Financial and educational training has been found to significantly lower
levels of depression and caregiver burden (Lezko, 2019). Studies have shown the positive impact
of psychosocial interventions in easing caregivers’ burdens and mitigating the distress they
experience (Adelman et al., 2014; NASEM, 2018); however, there are limited intervention
studies focused on examining interventions to reduce financial strain among family caregivers.
78
The CONFIDENCE Intervention
Interventions and support services designed to alleviate caregivers’ financial burden and
strengthen their ability to adapt could involve offering educational and training programs that
facilitate access to local community resources. The Confidently Navigating Financial Decisions
and Enhancing Financial Wellbeing in Dementia Caregiving (CONFIDENCE) program was
developed with this in mind. The purpose of the CONFIDENCE program is to lower the out-ofpocket dollar spent on caring for persons living with dementia. Broader goals include (1)
promoting overall financial well-being and (2) reducing financial strain. The program is designed
to achieve its goals by displacing out-of-pocket spending with community and informal
resources and facilitating help-seeking behaviors.
CONFIDENCE utilizes effective intervention methods from nursing and gerontological
research to decrease caregiving expenses and avoid financial difficulties for low-income family
caregivers. The program is informed by the self-efficacy theory (Bandura, 1977) and the
Resourcefulness and Quality of Life Theory (Zauszniewski, 2016). Psychoeducational
techniques are integrated throughout the sessions. For example, there are opportunities to
practice using didactic information learned during the sessions and receiving peer feedback on
applying knowledge and addressing challenges that other peers may experience. This program is
delivered as a service program at the University of Southern California (USC) Family Caregiver
Support Center (FCSC) and was supported by an AARP Foundation grant. Case Western
Reserve University led the evaluation of the program to test its preliminary efficacy and
feasibility (Meyer et al., in review).
In brief, CONFIDENCE is a 5-week, Zoom-based program. It is led by facilitators either
with experience in caregiver intervention or by someone trained with this experience. Sessions
are approximately 1.5 hours and are held once per week, with up to 1-hour of take-home
79
activities each week. Each session focuses on a different topic to help caregivers displace out-ofpocket care costs and reduce financial strain (e.g., seeking community resources to replace outof-pocket spending). It is a hybrid model, blending weekly web-based group interactions with
the flexibility of asynchronous content delivery. The intervention aims for caregivers who
participate to report increased levels of resourcefulness and self-efficacy after completing the
intervention compared to their pre-intervention scores. In addition, the CONFIDENCE
intervention hopes to improve outcomes related to monthly out-of-pocket caregiving costs and
financial anxiety/worry.
Evaluating Acceptability
Ensuring that an intervention is well-received by the target population is an integral part
of acceptability. Interventions tailored to meet participant needs, preferences, and values increase
satisfaction and engagement (Bowen et al., 2009; Diepeveen et al., 2013). Stage 1 of the NIH
Stage Model includes creation, refinement, and pilot testing (Onken & Shoham, 2014). This
stage includes two phases: designing the intervention to engage the target audience (1A) and
testing its preliminary efficacy and feasibility (1B). Categorizing this study as ‘Stage 1B’
highlights the importance of gauging acceptability for broader applications.
Evaluating acceptability helps identify factors affecting adherence, execution, and
outcomes, facilitating necessary adjustments to the intervention’s design to boost its practicality
and acceptance (Sekhon et al., 2017). Given the lack of literature on defining or assessing the
acceptability of healthcare interventions, Sekhon and colleagues (2017) developed a multiconstruct Theoretical Framework of Acceptability to apply to such circumstances. This
framework can be used prospectively and retrospectively from the perspectives of both those
who deliver the intervention and those who receive it. This dissertation focuses on the
retrospective acceptability of caregiver participants following the completion of the intervention.
80
Sekhon and colleagues (2017) describe acceptability as a multifaceted concept, judging
an intervention’s appropriateness through direct or anticipated experiences. Their Theoretical
Framework of Acceptability suggests intervention acceptance can be understood through seven
constructs of acceptability in healthcare interventions: affective attitude, burden, ethicality,
intervention coherence, opportunity costs, perceived effectiveness, and self-efficacy (detailed in
Appendix A). Breaking down acceptability into validated theoretical constructs is essential to
evaluating complex interventions (Sekhon et al., 2017). These components provide a
comprehensive framework to understand the multidimensional nature of acceptance within the
broader concept of acceptability in healthcare interventions. They represent different dimensions
of acceptance, encompassing emotional, cognitive, practical, and ethical considerations. By
considering these constructs, researchers can gain insights into the factors influencing acceptance
and tailor or modify interventions to enhance acceptability.
Sekhon’s framework has effectively informed qualitative and quantitative studies
evaluating the acceptability of behavioral interventions (Timm et al., 2022; Meyer et al., 2023).
The theoretical underpinning of using qualitative and quantitative methods lies in its ability to
capitalize on the strengths of both qualitative and quantitative research, providing both depth and
breadth in understanding (Clark & Ivankova, 2016). A multi-method approach enables a more
robust and holistic understanding of an intervention’s effectiveness and acceptability (Greene et
al., 1989). It allows interventionists to tailor adjustments to meet participant needs and
expectations, enhancing acceptability (Yardley et al., 2015).
A multi-method approach aligns with the pragmatic paradigm, positing that the research
method should follow the research question. Methodological triangulation allows for multiple
ways of understanding the complex realities of the research questions (Morse, 1991; Tashakkori
81
& Teddlie, 2003). Early-stage qualitative research offers the potential to provide deep insights
into participant’s views, values, and nuanced experiences, providing rich data (Graneheim &
Lundman, 2004; Elo & Kyngäs, 2008; DeJonckheere & Vaughn, 2019) crucial for understanding
and improving feasibility, considering cultural, social, and environmental aspects (Ayala &
Elder, 2011). As seen in similar web-based interventions (Meyer et al., 2023), qualitative
interviews can assess participant acceptability (Sekhon et al., 2017). In contrast, quantitative
measures, such as satisfaction surveys, systematically measure and validate these experiences
across a broader participant base. Assessing participants’ valuation of an intervention can inform
areas for improvement and refinement to increase acceptability (Al-Abri & Al-Balushi, 2014).
The Present Study
Using the Theoretical Framework of Acceptability (Sekton et al., 2017), the purpose of
the present study was to examine the perceptions of Latino caregivers of persons living with
dementia participating in the CONFIDENCE intervention on the program’s acceptability. As
there are limited thoroughly evaluated interventions aimed at improving financial well-being
interventions for caregivers of persons living with dementia, it was essential to assess
CONFIDENCE’s acceptability before further implementation. This study retrospectively
examined the acceptability of the pilot program via qualitative and quantitative methods guided
by Sekhon’s framework (Sekhon et al., 2017). Analysis of post-intervention data through this
lens will be used to assess the perceived value of the intervention, identify skills and benefits
gained according to participants, and collect participant feedback on the intervention’s
suitability. The research question guiding this study was: Do Latino caregivers of PLWD find the
CONFIDENCE psychoeducational financial program to be an acceptable intervention in helping
lower out-of-pocket costs of care and the management of financial situations? This objective
82
aligns with the fourth goal of the National Strategy priorities, which is to strengthen caregiver
financial security (Administration for Community Living, 2022).
Methods
Study Design
This study employed qualitative and quantitative approaches to examine the acceptability
of the CONFIDENCE intervention among Latino caregivers. It used in-depth, semi-structured
qualitative interviews (N = 14) and a 14-question satisfaction survey (N = 21) taken after
program completion. The Sekhon’s framework informed the study design (interview guide,
coding, and interpretation). This framework is a suitable assessment tool as it can evaluate
individual, interpersonal, and community-level interventions (Sekhon et al., 2017).
Data Collection
Eligibility and Recruitment. Participants were eligible to participate if they met the
following criteria: 1) self-identified as Latino, 2) provided care for a PLWD, 3) was 18 years or
older, and 4) attended at least one session of the CONFIDENCE intervention. In total, there were
69 participants in the CONFIDENCE pilot program. Participants included those who attended
the program only (n = 49) and those who attended CONFIDENCE as part of a pre-and post-test
intervention trial (n = 20). Detailed information about the clinical trial can be found at
ClinicalTrial.gov (NCT 05292248, 2023). This approach enabled the researchers to assess
acceptability among a broader group of caregivers than those who chose to participate in the
clinical trial. A purposeful sample of 14 caregivers was recruited for qualitative interviews to
support the inclusion of caregivers from different genders and engagement with the intervention
based on attendance. Participants were invited to join by email invitation. For the quantitative
component, all caregivers who completed the intervention were asked via email to complete a
14-item satisfaction survey.
83
Interview Guide. The qualitative interview guide included open-ended questions
informed by recent literature on Latino caregivers (Mage et al., 2023). In addition, to ensure that
appropriate questions were asked to ascertain participant feedback on the intervention related to
acceptability, Sekhon’s framework of acceptability was used (Sekhon et al., 2017). The research
team reviewed the interview guide, which asked about the program’s purpose, the skills they
acquired by participating, how the program helped them protect their financial well-being as a
caregiver, and which parts of the program were most helpful to them as well as barriers and
challenges to participation. For interviews conducted in Spanish, the interview guide was
translated into Spanish by a native speaker. A copy of the English interview guide can be found
in Appendix B.
Interviews. Interviews were approximately 45 minutes and held virtually via Zoom.
Verbal consent was obtained from participants by telephone before completing the interview.
Research team members conducted the interviews in Spanish or English based on participant
preference. Interviews were recorded and later transcribed. Spanish-based interviews were
conducted by a native speaker, translated into English, and then reviewed by a bilingual team
member to confirm accuracy and preservation of meaning. Final transcripts were imported into
NVivo 1.7.1. The interview method followed Baker and Edwards’ (2012) recommendations to
interview at least 12 caregivers and were held until no new themes or codes emerged, reaching
thematic saturation (Guest et al., 2006). The research team felt saturation had been met after the
completion of the tenth interview, as the following four interviews provided no new concepts.
Satisfaction Survey. Satisfaction was assessed with a 14-item survey sent to all
participants who completed at least one of the five CONFIDENCE sessions. The survey covered
aspects of the intervention that captured the components of acceptability (Sekhon et al., 2017),
84
gauging overall perception of the program and explicitly focusing on participants’ impressions of
the information presented. The survey questions can be found in Table 4.1. Satisfaction levels
were rated on a Likert scale ranging from 1 to 5 (1 = strongly disagree, 2 = disagree, 3 = neutral,
4 = agree, and 5 = strongly agree). For each question, responses were categorized as “satisfied” if
the participant agreed or strongly agreed with the prompt.
Data Analysis
We applied a thematic analytic approach to analyze interview transcripts (Braun &
Clarke, 2006) guided by the seven domains of acceptability: Affective Attitude, Burden,
Ethicality, Intervention Coherence, Opportunity Costs, Perceived Effectiveness, and SelfEfficacy (Sekhon et al., 2017). The codebook (Table 4.2) gives examples of caregiver portrayals
of each component (i.e., Intervention Coherence: Caregiver shows an understanding of the
intervention and how it works). Using NVivo 12, three research team members (SM, RA, DS,
KM) independently coded the transcripts and then met to review the codes. Discrepancies were
resolved through discussion. Aspects of Latino culture emerged during coding, which were
incorporated and then applied retrospectively to previous transcripts, see Table 4.2. Means and
percentages of participant responses to each survey question were calculated to describe
participant satisfaction.
Ethical Considerations
The CONFIDENCE study was first approved by the University of Texas Health Science
Center at San Antonio Institutional Review Board (IRB; 20210794HU) and then Case Western
Reserve University (STUDY20221010) IRB following the transfer of the research site. The
parent study is registered on ClinicalTrials.gov (NCT 05292248). The University of Southern
California (UP-23-00020) approved a second IRB protocol to perform the qualitative secondary
analysis of the caregiver interviews, and anonymity was maintained for all participants.
85
Narrative Findings
Sample Characteristics
Sixty-nine caregivers participated in CONFIDENCE between May 2022 and September
2023. Fourteen consented to participate in the qualitative study (Table 4.3). The average age of
participants was 59. Most were women (n=13, 95%). Eleven interviews were held in English
(79%), and three were in Spanish (21%). Nearly two-thirds of the caregivers attended at least
three CONFIDENCE sessions (64%); almost half (44%) completed all five sessions.
Thematic Insights
Analysis of the semi-structured interviews revealed four key themes: (1) the perceived
need for financial intervention, (2) perceived effectiveness of the intervention, (3) positive
responses to participation, and (4) recommendations to improve the intervention.
Theme 1: The Perceived Need for Financial Intervention. Thematic analysis revealed
a perceived need for a program like CONFIDENCE to address financial well-being and lower
out-of-pocket care costs; “I was looking for something like this,” said one caregiver (Participant
7).
Caregivers Found the Content Important and Relevant to their Situation. Caregivers
appreciated building financial management skills through CONFIDENCE, recognizing its
relevance (‘intervention coherence,’ Sekhon et al., 2017): “It’s to help caregivers, especially
those of us who have not managed our finances on our own, teach us and guide us on how to
begin the process of taking over some of the skills of managing our finances. (Participant 3).
They expressed eagerness for such a program. “It’s the class that I was hoping for a long time,”
shared one participant, “It was my New Year’s resolution to be more financially confident.”
(Participant 4). Awareness of dementia’s uncertain financial implications was also a concern. It
underscored the importance of saving money given the uncertainty of what care may look like on
86
the future: “I need to pull through despite my husband’s illness, and we also have to provide
financially. We have to find ways to make money last.” (Participant 13).
Dementia can go on for many years. It doesn’t matter your financial situation, there’ll
always be a lot of juggling. People have no clue how long it runs, what home aid costs, or
the legality of financial issues and assets if you were to need placement. (Participant 14)
CONFIDENCE is relevant to Latino family caregivers. In interviews, caregivers noted
the program’s particular benefit for Latino families due to a perceived gap in financial
knowledge related to division of household tasks between men and women (Participant 13).
They emphasized its potential value to women, often expected to be caregivers within these
families:
It is, and on a very personal level, for us Mexican-Americans, typically, the man takes
over the finances…so this program is very important…whether it’s the wife or the
daughter, so she can learn how to handle their finances. (Participant 3)
One caregiver highlighted that the program aims “to help primarily Hispanic families to deal
with strategies for why our out-of-pocket expenses are so much higher than other groups.”
(Participant 11). They valued the program’s approach, which respects multiple ways of providing
care rather than questioning their care choices based on the financial cost (Participant 11).
I mean, there is a reason why we pay more out-of-pocket than other people. It’s a
different mindset, and [CONFIDENCE] doesn’t say, “Stop doing that.” “Why are you
doing what you’re doing?” Instead, it gives strategies and ideas. (Participant 11).
Theme 2: Perceived Effectiveness of the Intervention. The concept of ‘perceived
effectiveness’ is crucial to the acceptability of an intervention, as participants are unlikely to
accept something they do not believe will be effective (Sekhon et al., 2017). The second theme
covers such benefits of participation, including increased knowledge, new skills, and mental
health enhancements.
Caregivers Felt the Program Improved their Knowledge, Especially of Community
Resources. Participants felt the program enhanced their financial knowledge and management
87
skills. One participant shared increased spending awareness (Participant 2), while another
praised CONFIDENCE for making financial well-being information accessible and boosting
their confidence to manage finances (Participant 3).
This information is amazing. It’s here for us to dive in and just have the confidence to
explore it. And this class did that; it gave me the confidence. (Participant 3).
Caregivers, especially those new to managing household finances, found that
CONFIDENCE led them to think of innovative solutions to financial hurdles.
It actually helped because it opens up the door. It’s like, oh my God, I didn’t even think
about that, but that’s so true…and when they share their solution, oh my God, that’s
right. ‘Cause you don’t think about it. (Participant 10)
Caregivers learned about the breadth of available resources. “I was very surprised finding
out how many resources are available for a caregiver,” shared one caregiver (Participant 6). “I
learned that there are many programs; there’s an enormous amount of programs that are out
there,” said another (Participant 1). Many participants expressed that their newness to the
caregiving role led to unawareness of available resources: “I’m fairly new in where I’m at right
now in relation to the caregiving aspect of it. ‘Cause I’m pretty uneducated when it comes to
what those are, and where they are, and how to find them, use them where they can help you.
(Participant 9).
We didn’t know that [resources] were available, and, unfortunately, we didn’t know this
was part of the stress that all caregivers experience when the sick person depends on you
or your family. (Participant 8).
Caregivers reported reaching out to programs they learned about, i.e., paid family leave
and In-Home Supportive Services (IHSS) programs (Participant 5), adult day care centers
(Participant 1), and local senior center Medicaid workshops (Participant 12). New knowledge of
community resources helped caregivers, in some cases, to offset the costs of caregiving:
I really liked receiving the papers that said that you can save a certain percentage of your
electric bill. Sometimes, you don’t believe these things. You think it’s just a flyer, and
88
you don’t take these things seriously. Through this program, you realize that these things
do exist. So, there are benefits in taking the time to make phone calls and ask about these
things. (Participant 13)
I got so much help with providing [equipment] for my mom that we qualified for. I got a
chair for the bath and grab hold bars. I wasn’t aware that I qualified for $250 to buy stuff
for my mom. (Participant 5)
Caregivers Felt the Program Improved the Skills they Needed to Manage their
Financial Well-Being. The CONFIDENCE program equipped caregivers with financial
management skills to reduce care-related costs. Strategies offered included tracking expenses,
using a budget to make care-related decisions, and asking for help from formal and informal
resources.
It gave different strategies that I can modify for what I need. Everybody is gonna be
different, but the great thing that it gave was strategies and tips, and you use what you
can. I think I came from a pretty high place, but this put me over the top. (Participant 11).
Caregivers noted these skills significantly improved their financial habits. “It has helped me a lot
to manage or divide my expenses more reasonably,” shared one caregiver (Participant 7).
Another highlighted increased spending awareness by documenting purchases, recognizing
potential overspending within weeks: “Now, I’m writing everything down. Like when I buy
something…and within just two weeks, I’m realizing, wait a minute, I think I’m overdoing it.”
(Participant 12).
Several caregivers credited goal-setting activities for improving their finances, noting that
clear, achievable targets fostered savings and debt reduction. One caregiver described how she
began to start saving towards her goal: “They told us how to have a plan and how to start. One of
my plans was to start saving. I started, and today I have at least $100 for my mom’s needs in the
future.” (Participant 6) Another caregiver discussed how she applied the lessons to reduce debts:
89
I got my tax return. Paid off a credit card. Paid down two credit cards. Put money in my
emergency thing. So, I knocked off three goals. It was like I had already planned on it,
why I was doing it, and what it meant to me. Had I not done that …I might have maybe
done something, and it wouldn’t have been as gratifying. It was so awesome to break
down goals in a way where I knew for sure what I was gonna do and how it was going to
make me feel as a result. (Participant 5)
Caregivers Described Learning Communication Skills to Get their Needs Met.
Caregivers found that enhanced communication skills helped effectively access support from
various resources. They learned about community resources and strategies for engaging with
service organizations to offset care-related expenses.
This class gave me the ability to retool how I can speak to someone who would be able to
help me with different resources to help my mom and me and language better to outside
resources to help us as I move forward with her. (Participant 4)
The program taught caregivers techniques for effectively discussing support needs with
their social circle. Many caregivers successfully sought more family assistance after learning to
comfortably ask for help through the program: “It helped me to plan that I had to get help from
my family…And so, I did speak to my family, and now I got a little bit more help from them.”
(Participant 6).
I started writing, okay, this person, and this person, and just not being afraid to ask. I’m
actually going to ask people, “Hey, can you spend an hour with [care recipient], go
walking or whatever?” So, that was a good tool. (Participant 12)
The financial discussion training was especially beneficial for the Latino caregivers, who
noted cultural reticence around money talk. One caregiver pointed out a stigma in Latino
households against discussing finances (Participant 4). At the same time, another linked it to
perceived pride and desire to avoid negative cultural stereotypes around the use of state
programs.
90
There’s this sense of pride. Like you’re not supposed to ask for resources. ‘Cause you
don’t wanna sponge off the state…A lot of that is just engrained in you that you just
don’t want, you know, ‘cause your family is so proud. Like my mom’s so proud to be an
American now, proud to be here and contribute constantly, you know, that you don’t
want to be a burden in a sense. (Participant 5)
Caregivers Felt the Program Improved their Mental Health. Caregivers reported that
the CONFIDENCE program alleviated financial stress, improving their mental and emotional
well-being. “Most people like myself live paycheck-to-paycheck. The financial stress takes its
toll,” said one caregiver, who found relief through the program’s savings and money
management strategies (Participant 10). Another mentioned the anxiety of future uncertainties:
“‘Cause I don’t know what is coming, and I’m not sure what I’m gonna have to deal with. And,
when I get there, I’m not sure what I’m gonna do. (Participant 9).” Many noted positive
emotional changes as they engaged with the program.
I was sobbing so much. Then, once I started applying, you know, doing the little
exercises and reading the material, it shifted something in me. Something had gone to
sleep for a while… And what it just did was it – it recharged it. It awoke that problemsolving part of my brain again. (Participant 5)
CONFIDENCE bolstered caregivers’ mental health by reinforcing their self-confidence
and providing assurance even when the information was already known. “It reassured me, yeah,
you are going in the right direction,” said one caregiver (Participant 10). Another echoed this
sentiment: “It helped me to reassure me, ‘Hey, you have these skills. You can do that.’”
(Participant 12). Caregivers felt validated in their decision-making and more equipped to handle
surprises and assert their needs. This affirmation helped them to recognize and trust in their
existing abilities.
It’s reinforcing what needs to be done and how to go about it and to think about it. And
even though you do it every day, we were discussing the importance of doing it.
(Participant 14).
91
Theme 3: Positive Responses to Participation. Participants had a favorable ‘affective
attitude’ towards the intervention (Sekhon et al., 2017). They liked the flexibility of the
asynchronous learning format and the collaborative dynamic of the group sessions, emphasizing
the overall positive impact of the program.
Caregivers Liked the Program. Caregivers expressed high satisfaction with the
CONFIDENCE program, appreciating its educational value: “I am really happy that there is this
program to educate people.” (Participant 14). “This class is incredible,” said another caregiver,
“This information is amazing. It’s amazing. It’s an amazing gift because of this class. It’s such a
gift.” (Participant 4). Others conveyed a desire to re-enroll in the program or continue with it if
possible.
Honestly, there’s really nothing negative that I would say. I’d like to take the class again
maybe after a year ‘cause there’s always new things going on. I try to take classes more
than once because I always learn something. (Participant 10)
All caregivers interviewed endorsed the program, affirming they would recommend it to
other caregivers. When asked if other caregivers would benefit from the program, one caregiver
replied, “Yes, of course” (Participant 8). They believed it aligned with their values and would
suit other caregivers well: “It was very successful for those of us that were in the class. I think
that it would be really great for anyone that is a caretaker.” (Participant 1).
Caregivers Liked the Program’s Design, which Allowed for Group Discussions and
Flexibility. Caregivers valued the solidarity they felt within the program. It benefited their
learning and self-belief and motivated them to complete program activities: “There was that
camaraderie, people having all sorts of experiences; letting others know; I have challenges with
this program, but I stuck with it, asked for help, or I was successful.” (Participant 2). They liked
discussing challenges, seeking help, and hearing about others’ financial problem-solving
strategies.
92
Somebody shared a skill that I thought was really good. Every time they get a $10 bill,
they put it away for a whole year…I started doing something like that with larger
denominations, and I’ve been able to save a few hundred dollars. (Participant 10)
During group sessions, caregivers recognized similar challenges faced by other
caregivers; they realized they were not alone: “That is what helped me the most, hearing that
many people talk about their problems. It’s like a breath, learning to listen to other people who
are also going through the same situation, and how we try to help each other and learn that we’re
not alone in this fight”. (Participant 8). Another shared a similar reflection: “I was feeling
stressed or sad because I was the only one, but hearing other stories and learning that there are
resources there to help outside, besides the family, it helped me emotionally a lot.” (Participant
6). This awareness fostered emotional support within the group, making participants more
receptive to financial guidance:
It made it even more comfortable for me because I was able to open up and not feel like
I’m the only one that’s gonna be sharing this… and all of the participants were very, very
open in terms of what they shared. (Participant 1)
Caregivers Liked the Flexibility. Caregivers responded well to the program’s hybrid
format. They liked the group sessions, “I really appreciated that there was time to learn from the
other participants” (Participant 11), and felt that the collective experience added impact,
suggesting that an individual approach might not have been as effective. “There was some
cohesiveness to the group, which helped quite a bit because if it had just been each individual
pocket, I don’t think it would’ve been as strong,” said one caregiver (Participant 9). The
simultaneous ability to access program materials at their convenience was a positive aspect: “My
mother’s dementia goes in stages. Maybe I don’t need this right now, but I am going to need it.
And, what am I going to do? I feel like I have a place to look when that moment comes.”
(Participant 7).
93
There was a [National Council on Older Adults] Benefit Checklist URL that was given.
That was amazing. I actually shared that in another support group. You may go back in
two months or three months and say, “Oh, here it is. Let me re-look at it. Maybe there’s
something I could use now.” (Participant 14).
Most caregivers valued the independent aspect of CONFIDENCE, particularly the takehome assignments. They understood their importance and found the workload manageable, with
ample time for completion: “They would give us enough homework, and it was pretty good. It
wasn’t hard, and we had six days to find some time to do our homework.” (Participant 3). One
caregiver was particularly engaged and explored topics learned in greater depth at home.
I was doing a lot of homework. I was up late, just about every night, delving into
something. (Participant 4)
Theme 4: Recommendations to Improve the Intervention. Caregivers were asked
about their experiences, encompassing group discussions, asynchronous learning, and take-home
assignments. They shared feedback on the program’s beneficial aspects, as previously discussed,
and offered insights on potential improvements.
Help Caregivers Manage the Demands on Time. Some caregivers faced logistical issues
that affected attendance, such as the need to provide care during class times and inconvenient
scheduling. “Sometimes it’s difficult to come to class because our loved ones need our care,”
shared one caregiver (Participant 4). Caregivers often had to balance other responsibilities like
work or family commitments, making participation difficult: “I would’ve loved to participate
more,” said one caregiver, “but unfortunately, my current schedule only allows me to listen
rather than participate. (Participant 8). This resulted in a sense of missed opportunity for those
who could only partially engage.
Two hours is hard for me. I can’t get that kind of time away from Mom. It would be
better, I think, like an hour and a half or even an hour, but an hour might not give you
enough time to get that energy going, you know? (Participant 11)
94
Some caregivers felt the time required for take-home assignments was burdensome,
considering the already busy schedules of caregivers. Inability to complete tasks outside the
designated course time might deter caregivers from joining subsequent sessions.
Sometimes people are just so burnt out. I think that might be what causes people to fall
out of coming, because they feel like, “Oh, I was supposed to do an assignment. And I
didn’t do it. And I’m embarrassed. I don’t wanna not have something to present.”
(Participant 5)
Facilitate Engagement During Group Sessions. While participants were enthusiastic
about interacting with fellow caregivers, some felt the facilitators could have been more
engaging: “I found that I had the experience of being more talked at than engaged. It was a lot of
reading off the presentation…I think that you have to be engaged to be engaging.” (Participant
2). Additionally, some participants observed a reluctance among peers to participate in
discussions actively. “Trying to get most of the people engaged was rough,” said one caregiver,
“but it’s always gonna be rough. Some people are gonna try to sit there and listen, and pick
things up as opposed to get involved.” (Participant 9). To improve engagement, one caregiver
proposed starting each session with a brief check-in to foster a more interactive environment
(Participant 5).
Address Issues Related to Technology. As the program was web-based, caregivers who
lacked technological proficiency experienced challenges affecting their participation ability.
“Since I still haven’t learned to use a computer very well, I missed several sessions,” shared one
participant (Participant 13). Other technological barriers affected program delivery, like poor
audio quality during video-sharing, which impeded some caregivers’ ability to engage fully.
The regeneration of the video and audio is very poor. And it’s hard, right? Because these
are real caregivers who’ve not only put in their time and their thoughts. It’s emotional,
and it’s helpful. It’s beneficial. We want to get every piece that they’re saying and
discussing. So, if the audio is poor, it loses it. (Participant 4)
95
Satisfaction Survey Results
Sample
Of the total participants, 21 (30%) completed satisfaction surveys following the
intervention. Most were female (n=16; 76%), and two-thirds lived with the care recipient (n=14;
67%). Sampled caregivers were the care recipient’s child/child-in-law (n=16; 76%) or
spouse/partner (n=5; 24%). Almost half (n=9; 43%) reported providing over 14 hours of care
weekly. Of the 21 respondents, 11 caregivers were employed (38%). Most caregivers had some
college education (n=19; 90%), and of those, and 10 (47%) completed college. Seventeen
caregivers (81%) had been the primary caregivers of the person living with dementia for over
two years; of these, nearly half (n=10; 47%) had been providing care for over five years.
Additional respondent characteristics can be found in Table 4.4.
Results
Consistent with findings from qualitative interviews, caregivers reported high satisfaction
with the intervention’s content, setting, and delivery (Figure 4.1). All caregivers (n=21; 100%)
agreed (responding “Agreed” or “Strongly Agreed”) that they would recommend CONFIDENCE
to other caregivers and specifically to Latino caregivers. All caregivers (n=21; 100%) likewise
agreed that the information presented during the sessions applied to their caregiving situation and
was trustworthy. All (n=21; 100%) also felt comfortable sharing personal experiences and
financial details. Nearly all caregivers enjoyed participating in the program (n=20; 95%) and
found the content within specific domains easy to understand (n=20; 95%), easy to access (n=19;
90%), and convenient to attend (n=18; 86%). Most found that the take-home assignments added
to their learning (n=19; 90%).
96
Discussion
Overview
The present study investigated the acceptability of a financial psychoeducation program
for Latino caregivers of persons living with dementia by asking about its perceived value
(effectiveness) and participants’ overall satisfaction. Feedback was collected on the program’s
structure, relevance, and most beneficial aspects, as well as suggestions for improvements. The
findings from this study supported the acceptability of the program. Caregivers positively
endorsed CONFIDENCE, noting an increase in financial awareness and high satisfaction levels
with the program’s content and delivery. Quantitative survey data corroborated these findings,
supporting that the caregivers found the intervention engaging, understandable, relevant, and
trustworthy (Figure 4.1). Both survey responses and interviews reflected comfort and willingness
to discuss their caregiving roles and financial situations. In addition, caregivers were able to shed
light on areas of the intervention that needed improvement or modification.
How Findings Align with the Literature
Financial Interventions for Caregivers. Caregiver interventions seldom address
financial well-being (Glenn et al., 2021). Most caregivers are unprepared for future healthcare
expenses not covered by Medicare or Medicaid, though some populations may be
disproportionately affected. The literature notes financial limitations as a difficulty associated
with accessing resources for caregivers of persons living with dementia (Alhasan et al., 2021).
Notably, Latino caregivers experience higher levels of financial strain in the U.S. (Skufca &
Rainville, 2021); the care costs may exacerbate structural barriers affecting educational and
career achievements. The CONFIDENCE financial psychoeducational intervention was built to
support its acceptability; the program was designed to be effective and enhance participants’
perceived value or effectiveness, a fundamental construct of acceptability (Sekhon et al., 2017).
97
CONFIDENCE did this by integrating proven strategies like service systems and resource
navigation, financial education, and asset-building to mitigate financial strain and bolster
financial well-being (Glenn et al., 2021).
Psychoeducation Interventions for Caregivers. Psychoeducational interventions have
been found to outperform information-only approaches in enhancing caregiver skills and
reducing emotional distress (Pinquart & Sörensen, 2006; Farran et al., 2007; Tang et al., 2018).
By improving disease understanding and problem-solving capabilities and bolstering social
support, these interventions have been found to successfully alleviate caregiver burden (Kally et
al., 2014l Tang & Chan, 2016). According to Tang and Chan (2016), caregivers of persons living
with dementia benefit from interventions that integrate skill-building techniques that help them
formulate realistic goals. Our study supports this approach.
Despite different content and aims, the satisfaction reported aligns with findings from
Samia et al. (2012), highlighting the benefits of interactive problem-solving as it relates to
preparing for the future, identifying and reorganizing the support team, and self-care. Findings of
high satisfaction could indicate the efficacy of interactive problem-solving and the subsequent
boost in caregiver confidence, resonating with results from other group-based psychoeducational
interventions with this population (White et al., 2022; Samia et al., 2012; Meyer et al., 2023).
Communication skills training has been deemed essential for caregivers, helping to deepen
emotional connections between other caregivers, family, and friends (Van’t Leven et al., 2013).
Including such training within the CONFIDENCE intervention may have fostered improved
relationships and understanding between the caregivers and other group members, as well as
with their friends and family outside of the intervention. Active participation and skill-building
98
have been linked to enhanced financial and self-confidence among caregivers, supporting the
framework proposed by Sekhon and colleagues (2017).
Previous studies have established the appeal of online interventions (Hopwood et al.,
2018; Meyer et al., 2023; White et al., 2022). Although typical challenges of web-based
interventions, i.e., time constraints and scheduling conflicts, were reported, the overall design
was met with broad satisfaction. CONFIDENCE, like other online group-based
psychoeducational interventions, such as TeleSavvy, prioritized mental health (Hepburn et al.,
2021), which successfully created a positive learning environment. Mirroring the advantages of
group psychoeducational programs (Adelman et al., 2014), our hybrid model blended web-based
group interactions with the flexibility of asynchronous content delivery. Our research supports
findings that peer support is beneficial for managing the complexities of caregiving, as it
encourages open discussions on financial issues, enhancing the group’s collective problemsolving capacity (Samia et al., 2012; White et al., 2022). The program’s flexible format, allowing
caregivers to engage with materials at their own pace, was well-received and suited to varying
schedules. The design facilitated independent learning, underscoring the effectiveness and
practicality of self-paced learning models.
Culturally Tailored Interventions for Latinos. Our findings indicate that
CONFIDENCE offers a satisfactory culturally tailored financial education program to support
this demographic, who often spend more out-of-pocket on care costs and are more likely to have
limited formal financial engagement (Skufca & Rainville, 2021; Blanco et al., 2015). Due to the
rapid growth in the Latino population living with dementia, coupled with lower utilization of
formal care services and barriers to accessing care, overall expenses for Latino individuals living
with dementia and their caregivers are expected to increase at a faster rate compared to those of
99
non-Latino whites (Wu et al., 2016). Latino caregivers in the U.S. face unique financial strains,
often shouldering out-of-pocket expenses not covered by Medicare or Medicaid (Herrera et al.,
2013; Jaldin et al., 2023; Rote & Moon, 2018). These families often opt for more cost-effective
long-term care options, e.g., adult day care, and rely on informal care more frequently than nonLatino white families, who tend to utilize formal care services like nursing homes and hospice
care to a greater extent (Wu et al., 2016).
To address the higher levels of out-of-pocket financial demand found among many
Latinos, there is a need for culturally targeted financial well-being programs (Rote et al., 2019;
Skufca & Rainville, 2021; Mage et al., 2023). Language barriers may further prevent caregivers
from accessing and receiving resources (Alhasan et al., 2021). Research acknowledges the
importance of culturally-informed support for caregivers, particularly in Latino communities
where caregiving is heavily influenced by ethnic identity and cultural values (Napoles et al.,
2010; Adames et al., 2013; Jaldin et al., 2023). However, many existing programs fail to meet
the unique needs of diverse ethnic groups (Wennberg et al., 2015). Prior literature indicates a
need for home and community-based solutions adapted to cultural needs to enhance the limited
caregiver support, particularly for the Mexican American community (Rote et al., 2019). Latina
women who provide care to persons living with dementia may be disproportionately affected by
the costs of care due to deep-rooted societal expectations and cultural norms that intensify their
caregiving responsibilities and financial insecurity (Napoles et al., 2010; Jaldin et al., 2023).
Preparing families to navigate available resources and financial decisions could mitigate
financial risks while aligning with cultural norms about caregiving within the Latino community
(Jaldin et al., 2023). The CONFIDENCE intervention addresses the unique challenges of
100
juggling caregiving with financial duties while acknowledging the preference of many Latino
families for in-home care.
Improving Future Intervention Delivery
Despite the initial enthusiasm for the CONFIDENCE program, we observed lower-thanexpected attendance and completion rates, highlighting the prevalent time management issue for
caregivers engaging in interventions (Meyer et al., 2023). Previous research suggests that live-in
caregivers, burdened with extensive caregiving duties, often lack time for virtual interventions
(Samia et al., 2012). Streamlining session lengths could increase participation and commitment.
The appreciated flexibility of combining virtual group sessions with asynchronous work was not
without challenges, paralleling other web-based studies, where technical difficulties, audio
issues, and schedule clashes impacted user experience and potential program adoption (Meyer et
al., 2023). Caregivers also encountered logistical challenges and tight schedules, hampering their
ability to complete assignments. Addressing these technical hurdles and reinforcing the optional
nature of the tasks could foster greater program acceptance. Participant satisfaction often
correlates with expectations (Peck et al., 2001). Examining participants’ expectations before
delivering the program may benefit future implementations of CONFIDENCE.
Limitations
While many caregivers expressed interest in participating in the intervention, not all fully
engaged and completed the follow-up satisfaction surveys. This is a notable limitation of our
study; incomplete survey responses might skew our understanding of the intervention’s
acceptability. Despite high acceptance levels among respondents, the low completion rate, with
only one-third (N = 21, 30%) answering satisfaction survey questions, hinders a comprehensive
assessment of caregiver experiences. Future studies should prioritize strategies to enhance survey
101
completion rates for a more representative analysis of the intervention’s impact and
acceptability.
The demographic composition of our sample also presents limitations. Most participants
were female, potentially leading to an underrepresentation of male perspectives. Additionally,
the preference for English among participants raises concerns regarding the inclusion and
insights from Spanish-speaking caregivers. This language disparity could have influenced
attrition rates and subsequently impacted the conclusions drawn from the study. A deeper
analysis of language preferences could provide valuable insights. Coding in Spanish might also
uncover subtleties that might otherwise go unnoticed by English-speaking researchers, thus
capturing nuances lost in translation and enriching the depth of our findings.
While web-based delivery offers the benefit of reaching caregivers across various
geographic regions, it imposes a constraint by requiring a certain level of technological
proficiency and restricting who can participate. Our study may not capture caregivers’
perspectives without online access, whose perspectives on financial circumstances may differ
significantly. Furthermore, unclear feedback on session duration and frequency complicates the
identification of optimal intervention schedules, limiting the ability to provide precise
recommendations for future interventions.
Conclusions
The present study adds to the small but growing body of research on financial
interventions to help caregivers, particularly those caring for persons living with dementia. Our
findings underscore the acceptability of the CONFIDENCE program to Latino caregivers of
persons living with dementia seeking to enhance financial well-being and mitigate out-of-pocket
caregiving expenses, with Sekhon’s framework (2017) providing a valuable tool for assessing
intervention acceptability. Caregivers found the program relevant and helpful for their unique
102
financial situations. Overall, they enjoyed participating in the intervention and felt its delivery
was satisfactory, although some hiccups arose due to scheduling and technological logistics.
Considering the significant economic burdens faced by Latino caregivers, it is vital to
develop and support interventions tailored to their unique needs. As researchers, we must devise
innovative means to support this invaluable yet often overlooked caregiver demographic, who
are at risk of compromising their financial health while providing care, particularly amidst the
escalating rates of dementia among U.S. Latinos (Quiroz et al., 2022). Participant feedback
emphasizes the importance of maintaining the program’s focus on imparting knowledge and
resources to alleviate the financial burdens associated with caregiving. By leveraging culturally
relevant psychoeducational interventions, we can foster financial resilience and address the
disproportionate costs borne by Latino caregivers. While our study centers on Latino caregivers
in the U.S., its implications extend to a broader audience. They can inform caregiver support
strategies internationally, emphasizing the critical role of intervention acceptability in
determining effectiveness.
103
Table 4.1 Satisfaction Survey Questions Related to the Seven Domains in Sekhon’s
Theoretical Framework of Acceptability (Sekhon et al., 2017)
Construct of the Theoretical
Framework of Acceptability
Question(s) asked
Affective attitude: how an
individual feels about the
intervention
I felt comfortable and included in the CONFIDENCE
program.
I felt comfortable sharing about my caregiving experience
and personal finances during the CONFIDENCE program.
I enjoyed participating in the CONFIDENCE program.
I trusted the information I received in the CONFIDENCE
program.
Burden: the perceived amount
of effort that is required to
participate in the intervention
It was easy to understand the information presented during
the CONFIDENCE program.
The pace of the program was just right (i.e., not too fast and
not too slow).
I found it easy to access the CONFIDENCE program
online, including using Zoom
Ethicality: the extent to which
the intervention has good fit
with the individual’s value
system.
The information presented in the CONFIDENCE program
applied to my caregiving situation.
Intervention coherence: the
extent to which the participant
understands the intervention
and how it works
I knew who to contact if I had any questions about the
CONFIDENCE program.
Overall, I found the program to be interactive.
Opportunity costs: the extent to
which benefits, profits, or
values must be given up to
engage in the intervention
Overall, I found the program to be convenient to attend.
Perceived effectiveness: the
extent to which the intervention
is perceived as likely to achieve
its purpose
I learned from the other caregivers whom I attended the
program with.
I would recommend for specifically other
Latino/Latinx/Hispanic caregivers to participate in the
CONFIDENCE program.
Self-efficacy: the participant’s
confidence that he/she can
perform the behaviors required
to participate in the intervention
I found that take-home assignments added to my learning.
104
Table 4.2 Codebook for Qualitative Analysis
Codebook Definition
Affective attitude Caregiver expresses how they feel about the intervention.
Burden Caregiver describes the perceived amount of effort that was
required to participate in the intervention.
Ethicality Caregiver indicates that the intervention is a good fit with
their value system.
Intervention Coherence Caregiver shows an understanding of the intervention and
how it works.
Opportunity Costs Caregiver reports that they had to give up benefits, profits, or
values to engage in the intervention.
Perceived effectiveness Caregiver perceives the intervention as likely to achieve its
purpose.
Self-Efficacy Caregiver’s confidence that they can perform the behaviors
required to participate in the intervention.
Relevance of Latino cultural
and traditional values
Caregiver describes caregiving in relation to a sense of duty
to their family (i.e., Familialism) or traditional gender roles.
105
Table 4.3 Qualitative Interview Participant Demographics (N = 14)
Age (Years) Gender Below 250%
FPL Language Sessions
Attended
52 Female Yes English 4
66 Female No English 1
62 Female No English 5
56 Female Yes English 4
56 Female No English 5
54 Female No English 4
57 Female Yes Spanish 5
46 Female Spanish 5
63 Female English 2
73 Male No English 3
59 Female Yes Spanish 2
63 Female English 4
63 Female English 4
68 Female Yes English 5
Note: A blank cell indicates no response to the survey question.
106
Table 4.4 Satisfaction Survey Participant Demographics
Gender State Marital
Status Education Employment
Status
Relationship to
CR
Live
with CR
Hours of
Care/Week
Years
of Care
Female CA Partner Some
college
Working (Selfemployed)
Parent or PIL No 4 2-5
Male AZ Married College or
more
Retired Spouse or Partner Yes 8 1-2
Female CA Never
married
College or
more
Working (Paid
Employee) Parent or PIL Yes 6 5+
Female CA Divorced Some college
Not workinglooking for
work
Parent or PIL Yes 24 2-5
Male CA Married College or
more
Retired Parent or PIL No 13 1-2
Female CA Married College or
more
Working as a
paid employee Parent or PIL No 2 5+
Male TX Never
married
College or
more
Not working -
other Parent or PIL Yes 24
Female TX Married College or
more
Retired Spouse or Partner Yes 18 5+
Female CA Divorced College or
more
Working, selfemployed Parent or PIL Yes 24 2-5
Female CA Married Some
college
Full-time
student/trainee Parent or PIL No 12 5+
Female CA Married Some
college
Working as a
paid employee Parent or PIL Yes 6 2-5
Female CA Separated Some
college
Working, selfemployed Parent or PIL Yes 17 5+
Female Never
married
Some
college
Working as a
paid employee Parent or PIL No 12 2-5
Male CA Married HS or less Retired Spouse or Partner Yes 24 2-5
Female CA Widowed Some
college
Working as a
paid employee Parent or PIL Yes 16 1-2
Female Never
married
Some
College Disabled Parent or PIL Yes 15 5+
Female CA Married College or
more
Working as a
paid employee Parent or PIL No 2 5+
Female CA Married College or
more
Retired Spouse or Partner Yes 16 5+
Male CA Married Some
college
Working as a
paid employee Parent or PIL No 4 2-5
Female Married Some
college Retired Spouse or Partner Yes 5 2-5
Note: A blank cell indicates no response to the survey question.
107
Figure 4.1 Satisfaction Survey Results
Note: ‘Strongly Disagree’ was not selected for any question, so it is not included in this figure.
108
CHAPTER V: CONCLUSION
Family caregivers play a central, but often overlooked, role in the U.S. healthcare and
long-term services and supports (LTSS) systems. The empirical research presented in Chapters 2,
3, and 4 of this dissertation provides insight into some of the many financial challenges
experienced by family caregivers. I focused specifically on spousal caregivers and members of
the Latino community who are caring for older adults living with dementia, as these are two
populations that the literature suggests have high needs. Utilizing quantitative and qualitative
data, I explored the scope and effects of financial hardships faced by spousal caregivers and
Latino caregivers of older adults with dementia. The findings described below underscore the
critical need to protect and enhance financial security for these groups, as well as for all family
caregivers.
Key findings in Chapter 2 indicate that spousal caregivers experience greater subjective
financial strain than non-caregivers. Current spousal caregivers reported less satisfaction with
their present financial situation and were more likely to experience difficulty meeting their and
their household’s monthly expenses. The data also indicate that outcomes vary by spousal
caregiver type, i.e., new caregivers were more likely to experience worse financial strain than
ongoing caregivers and non-caregivers. The research included in Chapters 3 and 4 focused on the
Latino caregiving experience. Chapter 3 elucidates the reasons behind why these caregivers may
incur higher out-of-pocket expenses than other caregivers. Findings from this work informed the
development of a targeted financial intervention for Latino caregivers, the CONFIDENCE
Intervention. CONFIDENCE is an online psychoeducational program designed to alleviate
financial hardship and lower out-of-pocket care costs among low-income Latino families who
care for an older adult living with dementia. In Chapter 4, the acceptability of this intervention is
109
assessed among the Latino community. Findings indicate that CONFIDENCE is generally wellsupported among the Latino caregivers who participated and that they found it to be overall
acceptable in reducing out-of-pocket costs and helping with financial management.
In this final chapter, I start by presenting a brief overview of the preceding chapters’
methods and key findings. Then, I discuss the implications of the research for addressing policy
gaps in the caregiving field. Findings support the need identified by others (Levitsky, 2014) for
using data to elevate caregiving as a policy problem. I also include examples of U.S. policies that
have the potential to support family caregivers. The research presented in this dissertation adds
to the growing body of literature supporting the need for greater recognition and support of
family caregiving in the policy agenda. I end this concluding chapter with a discussion of its
implications and potential areas for additional research to further our understanding and support
for the expanding family caregiver population.
Overview
The chapters included in this dissertation describe how family caregiving is associated
with financial strain, build on the extensive knowledge base of caregiver burden, add to the
growing literature on the financial burden of care, and discuss how culturally tailored
interventions can be a resource for diverse caregivers experiencing financial strain.
The introduction (Chapter 1) examines the literature on the financial impact of
caregiving, detailing key components of the financial challenges faced by caregivers in the U.S.
It underscores the substantial economic value of unpaid caregiving, the diverse demographics of
caregivers, the escalating demand for caregiving due to an aging population and other
demographic changes, and the significant financial strain endured by specific groups such as
spousal and Latino caregivers, as well as those providing care for older adults with ADRD. This
sets the groundwork for the ensuing three empirical studies (Chapters 2-4). The introduction
110
describes the need for supportive policies and interventions to mitigate financial burdens and
enhance caregivers’ overall financial well-being. The current and concluding chapter, Chapter 5,
summarizes key findings, discusses how these findings are linked to the broader literature on the
need for caregiver financial security, offers program and policy recommendations, and suggests
next steps for research to continue to inform how to improve family caregivers’ financial wellbeing.
Chapter 1 introduces the financial challenges faced by family caregivers in the U.S.,
emphasizing their significant economic contribution and the growing demand for caregiving due
to an aging population. I highlight the diverse demographics of caregivers, noting that many are
women and belong to racial and ethnic minorities, and discuss caregiver burden, including
emotional, social, and financial strains. Chapter 1 details specific financial burdens like out-ofpocket costs and income loss, which can lead to long-term economic insecurity. Chapter 1
identifies the disparities faced by Latino caregivers, who spend a higher percentage of their
income on caregiving. The chapter outlines the dissertation’s objectives: to examine the financial
well-being of spousal caregivers, explore the financial challenges of Latino caregivers of persons
living with dementia, and evaluate the acceptability of a financial intervention to reduce out-ofpocket costs for Latino caregivers. The introduction sets the stage on the necessity of researching
the financial aspects of caregiving and creating supportive policies and interventions for this
population.
Chapter 2 analyzed subjective financial strain among a nationally representative sample
of spousal caregivers using data from the HRS (2008-2018). I investigate the connection between
spousal caregiving and financial strain by assessing two key indicators: satisfaction with one’s
current financial situation and the ability to meet monthly household bill payments. Two waves
111
of data were used in the analysis: Wave 1 (survey years 2012-2014) and Wave 2 (survey years
2016-2018). Hypotheses were that spousal caregivers 1) would experience worse subjective
financial well-being in Wave 1 than non-caregivers, 2) would experience worse subjective
financial well-being over time (in Wave 2) than non-caregivers, 3) who were new to the
caregiving role would experience worse subjective financial health than both ongoing- and noncaregivers in Wave 1, and 4) who were new to the caregiving role would experience worse
subjective financial health than both ongoing- and non-caregivers over time (in Wave 2).
Hypotheses 1 and 3 were supported by cross-sectional analysis, indicating significant
associations between spousal caregiving and the measures of subjective financial strain and that
new caregivers fared worse than other caregivers and non-caregivers. However, longitudinal
results did not support hypothesis 2, that financial burden would worsen over time among
spousal caregivers, and hypothesis 4, that those new to caregiving would experience worse
financial strain over time compared to patterns for ongoing or non-caregivers. These findings
suggest that subjective financial strain for spousal caregivers, while higher than for noncaregivers, remains relatively stable over time.
Chapter 3 explored the lived experience of Latino caregivers of older adults living with
dementia. It examined how caregivers manage out-of-pocket care costs and navigate available
resources by conducting and analyzing 11 in-depth, qualitative interviews with Latino
caregivers. Thematic analysis of interview transcripts was applied to better understand and
interpret findings building on previous research showing that Latino caregivers spend more
money in proportion to their annual income than caregivers of other race/ethnic groups. Three
central themes emerged from the analysis. The first theme, “Daily needs and costs,” detailed the
various out-of-pocket expenses faced by caregiving families and the strategies caregivers
112
employed to manage these costs. The second theme, “Psychological distress caused by financial
issues,” explored the psychosocial impact of caregiving expenses on caregiver well-being,
highlighting the financial strain, distress, and worry experienced. The third theme, “Stressful
barriers to accessing family and societal support,” examined the challenges caregivers encounter
when seeking resources to financially support their caregiving responsibilities. Further,
interviews revealed how culture may influence spending patterns, cost management, and
expectations of care. Findings show how Latino families’ preference for caring for a family
member living with dementia in the home may be met with a financial disadvantage due to the
high out-of-pocket costs of care coupled with a lack of knowledge on available resources. The
work included in this chapter helped inform the development of the CONFIDENCE intervention.
Chapter 4 assessed the acceptability of CONFIDENCE’s pilot program installation using
qualitative and quantitative data. The experience of Latino caregivers participating in
CONFIDENCE was examined via analyses of post-intervention in-depth, qualitative 1:1
interview transcripts and 14-question participant satisfaction surveys. Applying the Theoretical
Framework of Acceptability (Sekhon et al., 2017) demonstrated that the CONFIDENCE
intervention is retrospectively acceptable to Latino caregivers. The intervention was generally
well-received, with participants reporting benefits in managing finances and financial stress.
However, some challenges were identified, including managing tight time constraints and
balancing participation in the intervention while providing care. Results from satisfaction survey
responses mirrored the themes revealed by the qualitative analysis. These findings support the
continued implementation of the CONFIDENCE intervention and can be used when developing
interventions for other racial/ethnic groups or socioeconomically vulnerable caregiver
populations.
113
Overall, this dissertation’s findings contribute to the understanding of the caregiving
experience by taking a deeper look into the diverse landscape of caregivers in the U.S. By
focusing on populations more at risk for financial insecurity, specifically spousal caregivers and
caregivers belonging to the Latino community, this work allows for a better understanding of
their unique challenges and highlights the greater financial—and subsequent emotional and
physical—strains they encounter compared to other caregivers. Although many research studies
have focused on physical and mental health outcomes of caregiving, it is becoming increasingly
important to include financial health, especially for Latino caregivers, who spend more money
out-of-pocket on caregiving costs than other caregivers, and spousal caregivers, who may be
more prone to subjective financial strain than other caregiver types; both populations are the
focus of this dissertation. Centering on the financial burdens that disproportionately affect
different caregivers brings about new group-specific knowledge that can be used to develop
culturally relevant financial interventions. One such program, CONFIDENCE, aimed at reducing
costs and enhancing financial well-being for Latino caregivers, was informed by Chapter 3
findings. Chapter 4 assessed its acceptability and found it overall acceptable for Latino
caregivers.
Policies Supporting Caregivers
Addressing Policy Gaps in the Caregiving Field
A consistently reported and understudied challenge in caregiving research is the
economic repercussions of caregiving, including managing the out-of-pocket care costs (Zhu et
al., 2015). Despite being acknowledged as a policy concern, the financial burden of caregiving
has yet to be addressed with the same urgency as many other major policy issues in the U.S.
(Shilton, 2006). However, identifying the barriers to enactment and using data to problematize
caregiving can lead to more effective policies supporting caregivers. For example, while various
114
interventions are designed to aid caregivers, only a limited number of evidence-based
interventions have been implemented within a community setting (Gitlin et al., 2015; Czaja et
al., 2018). Evidence-based programs refer to interventions or programs thoroughly researched
and proven effective based on rigorous study designs and measurable outcomes (Hailemariam et
al., 2019). Although fidelity to tested standards should be a goal—to achieve the best results,
psychosocial interventions should be tailored to the unique needs of different groups of
caregivers (Olazaran et al., 2010). Interventions should consider caregiver backgrounds and
cultural influences, as factors like familial obligation and traditional gender roles may affect
caregiver adversity risk (Jaldin et al.,2023).
This dissertation’s third and fourth chapters demonstrate how qualitative and quantitative
research can be utilized to fill in knowledge gaps regarding various caregiving experiences. Like
those from Chapter 3, findings can help inform and tailor culturally appropriate financial support
programs for a target population, such as CONFIDENCE, also discussed in Chapter 4. My
assessment of this pilot program, informed by Sekhon and colleagues’ Theoretical Framework of
Acceptability (2017), offers guidance for researchers aiming to ensure that their interventions
establish culturally sensitive support systems for the intended caregiver population. It is equally
important to study the specific circumstances of these diverse populations to prepare best to
support their needs as caregivers. Highlighting specific challenges faced by caregivers, such as
the reluctance of Latino caregivers to seek financial assistance from family or the tendency of
spousal caregivers to manage the caregiving role independently, to policymakers and key
stakeholders could better frame caregiving as a policy issue. Given the demands of the role of
caregiver, concerns have been raised about the availability of caregivers to work toward more
115
supportive programs and policies. This shift in framing could occur even if caregivers are not
actively seeking a policy response (Levitsky, 2014; Meyer et al., 2018).
Identifying Barriers and Needs to Supporting Caregivers
Recognizing and addressing caregivers’ burdens and needs is crucial to support their
financial well-being. Caregivers are diverse in age, racial and ethnic background, the needs of
their care recipient, and caregiving arrangement, but many would benefit from similar kinds of
help. Most want accessible and affordable respite care in and outside the home, education,
training, and support. These needs are greater for caregivers providing care to persons from
diverse and underserved communities and for those caring for persons living with dementia.
Many caregivers face challenges when trying to obtain community-based resources and benefits
that could help cover out-of-pocket caregiving expenses. It is not uncommon for caregivers to
report stepping into their caregiver role, feeling unprepared and unsure of where to go for
information, services, and support (Reinhard et al., 2019). Even if resources, benefits, or
programs exist, they are often hard to access or find. Even after identifying a service, a caregiver
may encounter barriers (e.g., they may need help accessing the service, or they may find that the
support offered is too expensive or does not offer what they need).
Although policies to better support family caregivers are slowly emerging in the U.S.,
they are so far inadequate to address the fast-changing societal contexts that risk caregivers’
health and financial well-being. The result is a growing gap between the needs of family
caregivers and currently available policy and program supports, referred to as “policy drift”
(Levitsky, 2014; Rocco, 2017). Recent attempts to understand the causes of “policy drift” within
caregiving center on several overlapping themes focused on the costs of such policies and
personal and policy values.
116
The first key barrier is the high price of many policy solutions proposed to support
caregivers. An empirical analysis of caregiving legislation introduced from 1995 to 2016 found
that decrees with lower associated costs had higher odds of advancing through Congress by
passing in one or both houses (Rocco, 2017). Lower-cost legislation included one-time updates
to the Older Americans Act Title III, Part E - National Family Caregiver Support Program, to
enable the delivery of more units of respite and education services to caregivers. In contrast,
there is higher cost legislation, such as proposing to expand benefits programs to caregivers, such
as Medicaid-billed services to support family caregivers. Legislation to expand benefits
programs to support family caregivers has been described as a “pandora’s box” due to its
potential for runaway costs (Lipson, 2015). Compounding the impact of cost as a barrier to
policies to support caregivers, there is limited research demonstrating cost-savings that could be
achieved by offsetting expenses from expanding family caregiver supports, such as through
delay of nursing home placement among care recipients (Lepore & Chattopadhyay, 2020).
Another barrier to passing policies to better support family caregivers stems from cultural
beliefs about who is responsible for providing care and what families should expect from the
government. In the early 2000s, political sociologist Sandra Levitsky applied Gramsci’s (1971)
concept of cultural hegemony to explain the lack of political demand to support family
caregivers. Her book describes how the limited infrastructure in place to support caregivers
deterred caregivers from making novel policy demands since they did not imagine government
support for caregivers (Levitsky, 2014). A more recent interview study conducted in Canada had
similar findings: even when caregivers described themselves as policy advocates and recognized
the need for system change, they primarily focused on the care recipient’s needs rather than their
own needs independent of the care recipient (Funk & Hounslow, 2019). The persistent belief that
117
the challenges experienced by caregivers are private family matters rather than public policy
problems—or else that caregiver needs are secondary to those of care recipients—dampens
policy advocacy initiatives required to advance policy solutions designed to better to support
family caregivers.
Using Data to Elevate Caregiving as a Policy Problem
Caregivers have historically not effectively advocated for themselves. This is often due to
the overwhelming exhaustion and the time-consuming nature of their caregiving duties, which
leave them with little energy or time to champion their needs. Additionally, many caregivers are
unaware that they are part of a larger community facing similar challenges, and the transient
nature of the caregiving role—where responsibilities end once caregiving is no longer needed—
further discourages sustained advocacy efforts. This lack of awareness and continuity hinders
their ability to unite and collectively push for better support and resources (Levitsky, 2014).
However, collecting and reporting on caregiving data, like that from large datasets and
qualitative data reflecting the lived experiences of caregivers, is a valuable strategy to advance
both caregiving science and policies that support caregivers. This approach can provide a more
comprehensive understanding of caregivers’ needs and challenges, ultimately leading to more
effective and targeted interventions (Meyer et al., 2018; Goodwin et al., 2024). In other words,
researchers can use such data to inform advocacy efforts on behalf of caregivers.
Researchers can help identify caregiving as a policy problem by collecting and reporting
on objective caregiver data (Meyer et al., 2018). Well-presented studies can help problematize
caregiving by (1) gathering evidence to identify the financial and emotional costs to family
caregivers in order to support a policy agenda that meets their needs, (2) illustrating the extent of
the problem and the specific challenges that caregivers face in the U.S., and (3) highlighting the
cost of inaction. Additional details are provided below.
118
Gathering Evidence to Support a Policy Agenda. The Shilton model of effective
advocacy (2006) poses that the first of three steps toward successful advocacy is ‘Evidence’, the
“Why Advocate?” step. This step involves searching for, gathering, and translating the most
pertinent evidence that can be used to develop an advocacy agenda and presenting such evidence
as ‘urgent.’ This dissertation builds this initial step, highlighting an acute need for caregiver
financial assistance. This evidence can be used to develop a strategic action plan to address the
problems that have been identified. This is the second step; “What to Advocate?”. The third and
final step— “How to Advocate?”—entails the implementation strategy, involving disseminating
the advocacy messages and engaging with policymakers and stakeholders to move forward with
policy change (Shilton, 2006).
According to Shilton, advocating for an issue should be considered a priority ‘whenever
the volume of evidence regarding the health and community benefits exceeds the level of
funding and policy commitments to that issue’ (Shilton, 2006). To illustrate how published
evidence can precede policy change, he gives the example of tobacco control in the U.S. In the
seventies, efforts led by tobacco control advocates influenced and helped implement progressive
policies and programs via advanced actions in presenting evidence against tobacco use.
Presenting caregiver data in similar fashions can help establish why we should advocate for
caregivers, what should be advocated, and how the advocacy should be implemented (Meyer et
al., 2023).
Identifying Caregiving as a Problem. Although there is wide acknowledgment
identifying informal family caregivers as a core value of long-term care service delivery,
multiple barriers to creating supporting policies keep caregiving off the political agenda.
Kingdon (1984) suggests in his model of policymaking that the governmental agenda is set
119
according to problems, not conditions. Factors that affect agenda setting and the specification of
alternatives - or solutions - are active participants and the visibility of the problem. This suggests
increasing the visibility of the need for family caregivers in combination with framing shortages
of family caregivers as a policy problem (Meyer et al., 2018). Without the link between problems
and policy solutions, caregiving will continue to drift further from the national policy agenda. It
should be noted, however, that policies related to long-term services and supports are generally
under the purview of state governments, and some states are showing leadership in developing
policies to better support caregivers (Reinhard et al., 2023).
The use of objective information, like that presented in this dissertation, can help advance
the issues surrounding caregiving in the U.S. Caregiving data can present two specific types of
evidence: it can illustrate (1) the scope of the problem by showing the prevalence of and reliance
on caregivers in the nation and (2) the challenges specific to caregivers. The high prevalence and
scope of challenges experienced by caregivers can be used to show how caregiving goes beyond
being a private family matter to a public health problem that should be of great interest to
policymakers and their constituents (e.g., as in the National Alliance for Caregiving (NAC) and
AARP’s joint report, ‘Caregiving in the U.S. 2020’). Shilton (2006) calls such consensusbuilding a way for society to act on behalf of individuals who may lack the self-identification
and advocacy skills needed to promote change, a quality commonly associated with caregivers
(Levitsky, 2014).
Highlighting the Cost of Doing Nothing. National reports illustrate the need for
additional financial and workplace support for caregivers (NASEM, 2016; NAC & AARP,
2015). In addition to uncovering existing problems within caregiving, caregiver data can help
researchers and policymakers recognize the costs and economic implications of ‘doing nothing.’
120
For example, ignoring the need for effective support could increase healthcare costs over time.
Inaction may lead to a greater number of caregivers experiencing burnout, reducing their ability
to provide quality care and leading to more frequent hospitalizations and emergency room visits
(Schulz & Eden, 2016; NAC & AARP, 2020). As discussed previously, the financial hardship of
care is associated with increased caregiver burden, lower quality of life, and overall worsened
physical and mental health. Longitudinal data and data comparing caregivers to non-caregivers,
like those presented in Chapter 2, illustrate this point. Representative survey data about
caregivers in a particular state, like the regularly collected caregiver module in the California
Health Interview Study (CHIS, 2020-2021), can uncover specific health and financial challenges
among caregivers and facilitate the design of detailed policy responses.
Current U.S. Policies Supporting Caregivers
The following section provides some examples of policy initiatives and developments
that could influence family caregivers’ financial stability and security. These policies include
federal legislation, healthcare benefits, employment protections, and financial support programs
explicitly designed to address the unique challenges those who provide unpaid care to family
members face.
Older Americans Act of 1965. The U.S. Administration on Aging (AOA) was created
under the Older Americans Act of 1965 (United States, 1978) to oversee and coordinate aging
services. Now part of the Administration for Community Living (ACL), the AOA has played a
helpful role in translating caregiver research into services that aid and support caregivers. Home
and Community-Based Services (HCBS), funded partly by the Older Americans Act, aim to help
individuals with functional limitations who require assistance with daily activities remain at
home instead of moving to a care facility or memory clinic. HCBS provides health and human
services to older adults and supports caregivers via services to help them care for the care
121
recipient, including training, meal delivery, and respite opportunities (e.g., personal care services
and adult day care). Although HCBS has been shown to benefit caregivers, many caregivers do
not take advantage of HCBS (Bangerter et al., 2021).
Paid Family Leave. Paid Family Leave (PFL) provides partial wage-replacement
benefits to caregivers who need time off to care for an older adult. Eligible employees receive
paid leave at a percentage of their average weekly wage, with the amount of time and percentage
varying by state. This type of leave can help caregivers manage their responsibilities more
effectively, reducing their mental and physical health strain without the added stress of financial
loss. However, historically, these policies have been structured to support women and, more
recently, both parents during and after childbirth. This narrow focus often leaves out caregivers
of aging parents or other family members. Caregivers, many of whom frequently juggle
employment with caregiving responsibilities, need access to paid leave tailored to their needs,
too. The national average for PFL varies widely because it lacks a federal mandate. Despite
numerous attempts, comprehensive PFL at the federal level has yet to be successfully enacted,
resulting in a varied landscape of state-level programs; only 13 states and the District of
Columbia have enacted PFL policies (Boyens et al., 2022). Significant federal legislation was
introduced in 1993 with the Family and Medical Leave Act (FMLA). The FMLA guarantees
eligible employees up to 12 weeks of unpaid, job-protected leave annually for specific family
and medical reasons (FMLA, 1993). However, the legislation does not offer wage replacement,
which is a significant limitation. Expanding PFL to include all caregivers would acknowledge
the diverse caregiving roles individuals undertake and provide necessary relief, fostering a more
inclusive and supportive workplace environment.
122
Medicaid. Medicaid offers several programs and services to support caregivers,
recognizing their crucial role in providing care to older adults. Medicaid, a Federal/state
partnership offers varying income limits by state and specific Medicaid categories. Generally,
individuals must have income at or below a certain percentage of the Federal Poverty Level
(FPL). There are significant disparities in Medicaid coverage across the U.S., influenced by each
state’s decision on Medicaid expansion and other policy choices. Under the 2010 Affordable
Care Act (ACA), many states expanded Medicaid to cover all adults with incomes up to 138% of
FPL, or $27,234 for a household of two, but in some states, the income limits are much lower.
For example, Texas only covers adults with incomes up to 17% of the FPL, or $3,352. Despite
the significant disparities in coverage, Medicaid has the potential to help caregivers and alleviate
the financial burdens associated with providing care. Some of these ways are:
• Home and Community-Based Services (HCBS) Waivers: One of the primary goals of
HCBS waivers is to provide cost-effective care. These waivers allow states to offer a
variety of services that help individuals remain in their homes or communities rather than
institutional settings. Many waivers include support for caregivers, including respite care,
training, and counseling. Services can include personal care, respite care, and caregiver
training and education. For example, Personal Care Services (PCS) is a Medicaid benefit
in (put how many) states that covers home services for older adults who want to remain
in their homes. These services provide help with activities of daily living (ADLs), like
eating, dressing, and bathing. HCBS waivers are state-administered, but each waiver
program must be approved by the Federal Government’s Centers for Medicare &
Medicaid Services (CMS). This allows states to tailor programs to meet the specific
needs of their populations and have the flexibility to offer a wide range of services under
123
HCBS Waivers. Beneficiary eligibility for HCBS Waivers varies by state but typically
includes income and asset limits, as well as requirements related to the level of care
needed. Beneficiaries typically need a level of care that would otherwise require
placement in an institution.
• Medicaid Spousal Impoverishment Laws: Spousal impoverishment laws, part of the
Medicaid program, aim to ensure that one spouse receives necessary care without leaving
the other destitute. Like Medicaid, spousal impoverishment provisions vary by state. In
general, these provisions are designed to prevent a healthy spouse (referred to as the
“community spouse”) from becoming impoverished when their partner (referred to as the
“institutionalized spouse”) requires long-term care and applies for Medicaid. According
to the spousal impoverishment protections under Medicaid (42 U.S.C. § 1396r-5, 2024),
the community spouse is allowed to retain a certain amount of the couple’s combined
resources, known as the Community Spouse Resource Allowance (CSRA), and receive
part of the institutionalized spouse’s income, referred to as the Minimum Monthly
Maintenance Needs Allowance (MMMNA). The couple’s home is generally not
considered an asset if the community spouse continues to reside there. Additionally, the
community spouse has the right to request a fair hearing if the allowances allocated to
them are deemed insufficient.
Medicare Advantage Primarily Health-Related Supplemental Benefits. While
traditional Medicare does not pay for long-term services nor typically cover the costs of in-home
care or adult day services for caregivers, it does offer some limited coverage through Medicare
Advantage (Medicare, Part C). Medicare Advantage plans have introduced several revisions that
could significantly benefit caregivers of older adults. Health-related supplemental benefits,
124
introduced in 2019, are designed to cover services and items that help diagnose, prevent, or treat
an illness or injury, compensate for physical impairments, ameliorate the impact of health
conditions, or reduce avoidable healthcare utilization. These benefits are recent, and it is not
clear to what extent Medicare Advantage Plans will actually offer them or how extensive they
will be. While it is still too early to determine the full impact on caregivers and identify which
benefits will prove most effective, the potential for these supplemental benefits to significantly
enhance our nation's caregivers' financial well-being and security is undeniable. Some examples
of these are:
• In-Home Support Services: These include services that help older adults manage their
ADLs, which can enable them to stay in their homes longer and reduce the need for
costly nursing home care. Family caregivers may be eligible for payment through InHome Support Services (IHSS) under certain conditions. The specifics vary by state and
the Medicare Advantage plan the older adult is enrolled in.
• Adult Day Health Services: Adult Day Health Services (ADHS) offer health, therapeutic,
and social services to older adults needing supervised care during the day. While ADHS
are not free, they are generally more affordable compared to hiring in-home care or
placing a care recipient in a nursing home. Some Medicare Advantage plans may cover
these services as a supplemental benefit. ADHS help reduce the overall financial burden
on caregivers by providing a cost-effective daytime care option. These programs offer
respite for caregivers and financial benefits, as employed caregivers are less likely to
miss work, reduce their hours, take paid leave, or leave the workforce entirely to provide
care. This stability allows caregivers to maintain a consistent income, which is crucial for
their financial well-being.
125
• Non-Medical Benefits (Transportation, Meals, and Home Modifications): Medicare
Advantage plans can offer improved access to a range of non-medical supplemental
benefits, including medical transportation, home-delivered meal services, and home
modifications. By providing medical transportation, these plans can save caregivers both
time and money that would otherwise be spent on arranging and paying for
transportation. This can be particularly beneficial for caregivers who might need to take
time off work or incur costs associated with driving long distances. Similarly, homedelivered meals ensure that older adults receive nutritious meals without the need for
caregivers to spend extra time and money on meal preparation and grocery shopping.
Home modifications, like grab bars, can reduce the risk of falls and other accidents,
leading to reduced costly emergency room visits and hospitalizations. By making the
home environment more accessible, modifications can also enable older adults to remain
in their homes longer, delaying or avoiding the need for costly long-term care facilities.
This can save caregivers significant amounts of money that would otherwise be spent on
nursing home or assisted living facility fees. Overall, these services contribute to
improved caregiver well-being and financial stability by alleviating some of the logistical
and economic challenges associated with caregiving.
• Home-Based Palliative Care: This benefit provides specialized medical care for people
living with serious illnesses, focusing on relief from symptoms and stress. Home-based
palliative care can save caregivers money in several ways, including reducing hospital
visits, delivering cost-effective care, offering additional supportive services such as
counseling and respite care, managing medications effectively, and coordinating overall
care for older adults. Home-based palliative care can significantly alleviate the financial
126
burden on caregivers by addressing the medical, emotional, and logistical needs of
patients at home.
• Training for Family Caregivers: Medicare includes a billing code that allows providers to
receive payment for training family caregivers. This training will be conducted by
professionals such as nurse practitioners, physicians, and therapists. Although this
initiative does not offer a direct financial benefit to caregivers, there are several indirect
financial benefits that have the potential to help caregivers: Caregiver training could
equip caregivers with skills that might otherwise require hiring professional help;
Creating a billing code for caregiver training means that healthcare providers can offer
‘free’ training to caregivers, making it more feasible for caregivers to receive training
without bearing the full financial burden of paying themselves; Properly trained
caregivers can better manage the care recipient’s health conditions, potentially preventing
costly hospitalizations and emergency room visits; Training on self-care and managing
caregiver burnout can help caregivers manage their own health and well-being, reducing
the likelihood of needing medical care for stress-related conditions.
• Health Equity and Cultural Competence: Medicare Advantage plans are now mandated to
enhance their cultural and linguistic competencies. This includes improving provider
directories to better serve non-English speakers and incorporating efforts to reduce health
disparities into their quality improvement programs. These measures can significantly
reduce the risk of miscommunication and medical errors, potentially lowering the need
for costly repeat visits or treatments. By focusing on health equity, these programs aim to
ensure that underserved populations receive high-quality care, often along with
increasing access to preventative services. This proactive approach can improve health
127
outcomes, prevent costly medical conditions through early intervention, and ultimately
reduce the frequency of expensive hospitalizations and emergency visits.
• Telehealth and Digital Health Education: Medicare Advantage plans are now required to
offer digital health education to enhance access to telehealth services. This initiative
addresses the digital divide, particularly among older adults, and ensures that
beneficiaries can effectively utilize telehealth benefits. Improved access to healthcare
providers via telehealth allows caregivers to manage medical issues before they escalate,
thereby preventing costly emergency room visits and hospital admissions. Additionally,
telehealth and digital health education provide financial benefits to caregivers by offering
more flexible scheduling for virtual visits, reducing the need to take time off work, and
saving on travel-related expenses such as transportation, parking, and accommodation
when providers are far away.
• Special Supplemental Benefits for the Chronically Ill: Under the CHRONIC Care Act,
starting in 2020, Medicare Advantage plans can offer additional benefits tailored to the
specific needs of individuals with chronic conditions. Special Benefits for the Chronically
Ill (SSBCI) go beyond traditional healthcare services and can include a range of nonmedical services, e.g., meal delivery, transportation to and from medical appointments,
pest control, home modifications, and other services that support daily living and help
manage chronic conditions. These benefits have the potential to offer financial support
and services for caregivers of older adults living with chronic conditions by reducing outof-pocket expenses and easing the burden of care provision. Many of the ways in which
these services can help money and reduce care costs have been discussed above.
128
Implications & Future Research
This dissertation incorporates quantitative and qualitative research to identify multiple
areas of unmet needs, specifically around financial well-being for caregivers, with implications
for potential service categories that could enhance caregivers’ current and future financial
security. These include:
(1) Financial Strain and Daily Costs: Caregivers often face significant out-of-pocket
expenses for daily needs and healthcare costs, such as medical equipment,
medications, and personal care supplies like incontinence products and grooming
materials. These expenses may accumulate over time, causing financial strain –
including not being able to pay monthly household bills. (Informed by findings from
Chapters 2, 3 and 4).
(2) Psychological Distress Due to Financial Issues: The financial burden of caregiving
leads to psychological distress, affecting caregivers’ mental and physical health.
Worrying over finances is associated with anxiety, depression, and sleep disturbances
(Informed by Chapters 3 and 4).
(3) Barriers to Accessing Resources and Support: Caregivers encounter difficulties
accessing financial support and community resources. Challenges include lengthy
administrative processes, geographic inaccessibility, and lack of awareness about
available resources. (Informed by Chapters 3 and 4).
(4) Impact on Employment and Income: Many caregivers experience a loss of income
due to the need to reduce work hours or leaving the workforce entirely to provide
care. This reduction in income exacerbates financial insecurity and makes it harder to
cover household costs and related caregiving expenses. (Informed by Chapters 2, 3
and 4).
129
(5) Cultural Influences on Financial Management: Cultural factors influence how
caregivers manage costs and perceive their caregiving role. For instance, Latino
caregivers may prioritize family caregiving despite the financial disadvantage,
reflecting cultural values of familial obligation and respect. (Informed by Chapters 3
and 4).
(6) Need for Culturally Relevant Interventions: Interventions tailored to the cultural and
socioeconomic contexts of diverse caregiver populations are needed. This includes
those for spousal and Latino caregivers. For example, the CONFIDENCE
intervention (informed by Chapter 3 and discussed in Chapter 4), was developed to
provide financial education and support specifically for Latino caregivers of older
adults living with dementia. (Informed by Chapters 2, 3, and 4).
These unmet needs highlight the importance of developing comprehensive support
systems and policies that address the financial, psychological, and social challenges faced by
caregivers. Understanding the financial experience of caregiving can provide insight into what
best benefits the most caregivers and protect their financial security. State policies could focus
on broadening access to affordable healthcare services, resources, and other forms of support to
alleviate out-of-pocket expenses. This can be achieved through measures such as expanding
Medicaid coverage income limits and enhancing Medicare Advantage supplemental benefits.
Regarding the latter, many of the services offered within Medicare Advantage’s Primarily
Health-Related Supplemental Benefits, discussed above, have only been introduced in recent
years, specifically since 2019. Consequently, significant uncertainty remains regarding the extent
of coverage and the specific benefits provided under these new offerings.
130
Given the substantial promise these benefits hold, it is crucial to closely monitor their
implementation and utilization. Continuous assessment will help to identify gaps in coverage,
measure the effectiveness of various benefits, and provide insights into how these services can be
optimized to better support caregivers. Furthermore, it is essential that caregivers are wellinformed about the supplemental benefits available to them through Medicare Advantage. Clear
communication and outreach efforts are needed to ensure that caregivers understand how to
access these benefits and utilize them to alleviate some of the financial burdens associated with
caregiving. By keeping a close eye on the rollout and performance of these supplemental
benefits, policymakers and healthcare providers can make necessary adjustments and
improvements. This proactive approach will help maximize the positive impact on caregivers,
ultimately contributing to their economic stability and overall well-being. Ensuring that
caregivers are aware of and can effectively use these benefits will be a key factor in realizing the
full potential of these recent policy innovations.
These efforts are particularly crucial for underserved groups, who often
disproportionately experience higher financial burdens and economic challenges due to their
caregiving responsibilities. By addressing these disparities, state policies can ensure a more
equitable distribution of healthcare resources, ultimately improving the financial stability and
overall well-being of these vulnerable populations. Policymakers can consider findings like those
presented in this dissertation, along with other relevant research, to endorse legislation that
supports the economic well-being of caregivers, including measures that can be implemented in
the workplace. Such legislation could help protect caregivers from financial insecurity while they
fulfill their critical societal role. By providing financial protection and support, policymakers can
enhance the quality of life for caregivers, ensuring they are not forced to sacrifice their economic
131
security. This approach would not only benefit caregivers but could also have broader social
implications. For example, keeping caregivers in the workplace can improve their current and
future financial security and potentially reduce their dependence on social welfare programs.
Differences among race/ethnic groups and caregiver types show that some caregivers
may have increased needs for financial support compared with other caregivers. It is important to
consider these factors during the development and implementation of culturally tailored
educational financial interventions that can equip caregivers with the necessary tools and skills
they need to manage their economic situation more effectively. As explored in Chapter 4,
interventions that are specifically tailored to align with the needs, preferences, and values of the
target population, like CONFIDENCE, tend to be considerably more effective than generic
approaches. When participants find an intervention satisfying and relevant to their situation, they
are more likely to actively engage with it and perform the required tasks. Conversely, if the
intervention fails to resonate with their expectations or address their specific concerns, their
engagement levels may decrease, resulting in poor outcomes. Therefore, the design and
implementation of interventions must prioritize a deep understanding of the target population to
ensure meaningful and sustained impact (Sekhon et al., 2017).
The decade of the 2030s is poised to reflect and accelerate significant demographic shifts.
It is anticipated that, for the first time in U.S. history, individuals aged 65 and above will
outnumber those younger than 18 (U.S. Census Bureau, 2018). This anticipated change suggests
impending challenges related to caregiving as an increasing number of Americans will continue
to reach older age, heightening the risk for chronic conditions and related demands for care in the
community. Family caregivers are likely to bear much of this caregiving responsibility.
Furthermore, the complexity and frequency of care may escalate as an aging population
132
confronts various health issues that are episodic or chronic, like ADRD. Individuals are often
thrust into the caregiving role without training or preparation, and the responsibility of caring for
ill family members can negatively impact their financial and overall well-being. The U.S. will
need to better meet the needs of its diverse and growing population of caregivers through
leadership, advocacy, partnership, and a shared vision by a more inclusive group of caregiver
stakeholders.
Family caregivers provide invaluable care to our nation’s older adults—but who takes
care of the caregivers? Their well-being must be viewed as non-negotiable; caring for an older
adult should not come at the expense of their own quality of life.
133
REFERENCES
AARP. (2021). 2021 Home and Community Preferences Survey: A National Survey of Adults
Age 18-Plus. Retrieved from https://www.aarp.org/research/topics/community/info2021/2021-home-community-preference-survey.html.
AARP. (2023). Valuing the Invaluable 2023 Update: Strengthening Supports for Family
Caregivers. Retrieved from https://www.aarp.org/pri/topics/ltss/familycaregiving/valuing-the-invaluable-2015-update/
AARP & National Alliance for Caregiving. (2020). Caregiving in the U.S. 2020.
https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-theunited-states-01-21.pdfAdames, H. Y., Chavez-Duen, N. Y., Fuentes, M. A., Salas, S. P.,
& Perez-Chavez, J. G. (2014). Integration of Latino/a cultural values into palliative health
care: A culture centered model. Palliative and Supportive Care, 12, 149–157.
https://doi.org/10.1017/S147895151300028X
Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver
burden: A clinical review. JAMA, 311(10), 1052-1060.
https://doi.org/10.1001/jama.2014.304
Administration for Community Living (ACL). (2022). 2022 National Strategy to Support Family
Caregivers. Retrieved from https://acl.gov/CaregiverStrategy
Al-Abri, R., & Al-Balushi, A. (2014). Patient satisfaction survey as a tool towards quality
improvement. Oman Med Journal, 29(1), 3-7. https://doi.org/10.5001/omj.2014.02
Alhasan, D. M., Hirsch, J. A., Jackson, C. L., Miller, M. C., Cai, B., & Lohman, M. C. (2021).
Neighborhood characteristics and the mental health of caregivers cohabiting with care
recipients diagnosed with Alzheimer’s disease. International Journal of Environmental
Research and Public Health, 18(3), 913. https://doi.org/10.3390/ijerph18030913
Almgren, G. (2018). Health Care, Politics, Policy, and Services: A Social Justice Analysis. New
York, NY: Springer Publishing Company.
Altonji, J. G., & Doraszelski, U. (2005). The Role of Permanent Income and Demographics in
Black/White Differences in Wealth. The Journal of Human Resources, 40(1), 1-30.
http://www.jstor.org/stable/4129562
Alzheimer’s Association. (2021). Caregiver Stress. Retrieved from https://www.alz.org/helpsupport/caregiving/caregiver-health/caregiver-stress
Alzheimer’s Association. (2023). 2023 Alzheimer’s Disease Facts and Figures. Retrieved from
https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
134
Andren, S., & Elmstahl, S. (2007). Relationships between income, subjective health and
caregiver burden in caregivers of people with dementia in group living care: a crosssectional community-based study. International Journal of Nursing Stud, 44(3), 435-446.
https://doi.org/10.1016/j.ijnurstu.2006.08.016
Aneshensel, C. S., Pearlin, L. I., & Schuler, R. H. (1993). Stress, Role Captivity, and the
Cessation of Caregiving. Journal of Health and Social Behavior, 34(1), 54-70.
https://doi.org/10.2307/2137304
Assari, S. (2019). Race, Depression, and Financial Distress in a Nationally Representative
Sample of American Adults. Brain Sci, 9(2), 29. https://doi.org/10.3390/brainsci9020029
Ayala, G. X, & Elder, J. P. (2011) Qualitative methods to ensure acceptability of behavioral and
social interventions to the target population. Journal of Public Health Dent, 71(1), S69-
79. https://doi.org/10.1111/j.1752-7325.2011.00241
Baker, S. E., & Edwards, R. (2012) How many qualitative interviews is enough? Expert voices
and early career reflections on sampling and cases in qualitative research. National
Centre for Research Methods Reviews. Southampton, UK.
Bandura, A. (1977). Self-efficacy: Toward a Unifying Theory of Behavioral Change.
Psychological Review, 84 (2), 191–215. https://doi.org/10.1037/0033-295X.84.2.191
Bandura, A. (1997). Self-efficacy: the Exercise of Control. New York: W.H. Freeman Company.
Bangerter, L. R., Liu, Y., Kim, K., & Zarit, S. H. (2021). Adult day services and dementia
caregivers’ daily affect: The role of distress response to behavioral and psychological
symptoms of dementia. Aging & Mental Health, 25(1), 46–52. https://doi.org/10.1080/
13607863.2019.1681934
Beach, S. R., Schulz, R., Donovan, H., & Rosland, A. M. (2021). Family caregiving during the
COVID-19 pandemic. The Gerontologist, 61(5), 650-660.
https://doi.org/10.1093/geront/gnab049
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.
https://doi.org/10.1016/s0883-9417(03)00057-8
Bernal, G. (2006) Intervention development and cultural adaptation research with diverse
families. Family Processes, 45(2), 143-151. https://doi.org/10.1111/j.1545-
5300.2006.00087.x
Blanco, L. R., Ponce, M., Gongora, A., & Duru, O. K. (2015). A Qualitative Analysis of the Use
of Financial Services and Saving Behavior Among Older African Americans and Latinos
in the Los Angeles Area. SAGE Open, 5(1). https://doi.org/10.1177/2158244014562388
135
Bowen, D. J., Kreuter, M., Spring, B., Cofta-Woerpel, L., Linnan, L., Weiner, D., Bakken, S.,
Kaplan, C. P., Squiers, L., Fabrizio, C., & Fernandez, M. (2009). How we design
feasibility studies. American journal of Preventive Medicine, 36(5), 452-457.
https://doi.org/10.1016/j.amepre.2009.02.002
Boyd, K., Winslow, V., Borson, S., Lindau, S. T., & Makelarski, J. A. (2022). Caregiving in a
Pandemic: Health-Related Socioeconomic Vulnerabilities Among Women Caregivers
Early in the COVID-19 Pandemic. The Annals of Family Medicine, 20(5), 406-413.
https://doi.org/10.1370/afm.2845
Boyens, C., Smalligan, J., & Shabo, V. (2022). Evolution of federal paid family and medical
leave policy. Urban Institute; New America. Retrieved from
https://www.urban.org/research/publication/evolution-federal-paid-family-and-medicalleave-policy
Bradley, C. J., Kitchen, S., & Owsley, K. M. (2023). Working, Low Income, and Cancer
Caregiving: Financial and Mental Health Impacts. Journal of Clinical Oncology, 41(16),
2939-2948. https://doi.org/10.1200/JCO.22.02537
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in
Psychology, 3(2), 77-101. https://dx.doi.org/10.1191/1478088706qp063oa
Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in
Clinical Neuroscience, 11(2), 217-228.
https://doi.org/10.31887/DCNS.2009.11.2/hbrodaty
Burton, L. C., Zdaniuk, B., Schulz, R., Jackson, S., & Hirsch, C. (2003). Transitions in spousal
caregiving. The Gerontologist, 43(2), 230–241. https://doi.org/10.1093/geront/43.2.230
Cantor, M. H. (1983). Strain Among Caregivers: A Study of Experience in the United States. The
Gerontologist, 23(6), 597-604. https://doi.org/10.1093/geront/23.6.597
Campbell, L. A., & Kaufman, R. L. (2006). Racial differences in household wealth: Beyond
Black and White. Research in Social Stratification and Mobility, 24(2), 131-152.
https://doi.org/10.1016/j.rssm.2005.06.001
Caro, F. G., & Blank, A. E. (1988). Consequences of Helping for Informal Caregivers. Home
Health Care Services Quarterly, 9(2-3), 141-156. https://doi.org/10.1300/J027v09n02_09
Carmona, T. (2003.). Understanding Latino wealth to address disparities and design better
policies. Brookings. Retrieved from https://www.brookings.edu/articles/understandinglatino-wealth/
Carstensen, L. L. (2021). Socioemotional Selectivity Theory: The Role of Perceived Endings in
Human Motivation. Gerontologist, 61(8), 1188-1196.
https://doi.org/https://doi.org/10.1093/geront/gnab116
136
Cavanaugh, J. (2010). Aging in America. Caregiving and Health. Santa Barbara, Calif:
Praeger/ABC-CLIO.
Centers for Disease Control and Prevention (CDC). (2019). Dementia. Retrieved from
https://www.cdc.gov/aging/dementia/index.html
Chen, J. E., Lou, V. W., Jian, H., Zhou, Z., Yan, M., Zhu, J., Li, G., & He, Y. (2018). Objective
and subjective financial burden and its associations with health-related quality of life
among lung cancer patients. Supportive Care in Cancer, 26(4), 1265–1272.
https://doi.org/10.1007/s00520-017-3949-4
Chan, D., Livingston, G., Jones, L., & Sampson, E. L. (2012). Grief reactions in dementia carers:
A systematic review. International Journal of Geriatric Psychiatry, 28(1), 1–17.
https://doi.org/10.1002/gps.3795
Choi, L. (2009). Financial stress and its physical effects on individuals and communities.
Community Development Innovation Review, Federal Reserve Bank of San Francisco, 3,
120-122.
Clark, V.L.P., & Ivankova, N.V. (2016). Mixed Methods Research: A Guide to the Field.
https://doi.org/10.4135/9781483398341
ClinicalTrials.gov. Identifier: NCT05292248. CONFIDENCE Financial Education for
Caregivers. Retrieved from
https://clinicaltrials.gov/study/NCT05292248?id=NCT05292248&rank=1
Cohen, S. A., Sabik, N. J., Cook, S. K., Azzoli, A. B., & Mendez- Luck, C. A. (2019).
Differences within differences: Gender inequalities in caregiving intensity vary by race
and ethnicity in informal caregivers. Journal of Cross-Cultural Gerontology, 34(3), 245-
263. https://doi.org/10.1007/s10823-019-09381-9
Cooper, C., Balamurali, T. B., & Livingston, G. (2007). A systematic review of the prevalence
and covariates of anxiety in caregivers of people with dementia. International
Psychogeriatrics, 19, 175–195. https://doi.org/10.1017/S1041610206004297
Czaja, S. J., Lee, C. C., Perdomo, D., Loewenstein, D., Bravo, M., Moxley, J. H., & Schulz, R.
(2018) Community REACH: An Implementation of an Evidence-Based Caregiver
Program, The Gerontologist, 58(2), e130–e137, https://doi.org/10.1093/geront/gny001
Cruz-Saco, M. A., & López-Anuarbe, M. (2016). Ageing and Long-Term Care Planning
Perceptions of Hispanics in the USA: Evidence from a Case Study in New London,
Connecticut. Ageing International, 42(4), 488-503. https://doi.org/10.1007/s12126-016-
9249-3
DaDalt, O., Burstein, A., Kramer, B., D’Ambrosio, L. A., & Coughlin, J. F. (2016). Dementia
and financial incapacity: A caregiver study. Working with Older People, 20(2), 66–75.
https://doi.org/10.1108/wwop-07-2015-0015
137
DeJonckheere, M., & Vaughn, L.M. (2019) Semistructured interviewing in primary care
research: a balance of relationship and rigour. Fam Med Community Health, 8, 7(2),
e000057. https://www.doi.org/10.1136/fmch-2018-000057
Diepeveen, S., Ling, T., Suhrcke, M., Roland, M., & Marteau, T. M. (2013). Public acceptability
of government intervention to change health-related behaviours: a systematic review and
narrative synthesis. BMC Public Health, 13(1), 756. https://www.doi.org/10.1186/1471-
2458-13-756.
Dijkstra-Kersten, S. M., Biesheuvel-Leliefeld, K. E., van der Wouden, J. C., Penninx, B. W., &
van Marwijk, H. W. (2015). Associations of financial strain and income with depressive
and anxiety disorders. Journal of Epidemiology & Community Health, 69(7), 660–665.
https://doi.org/10.1136/jech-2014-205088
Dimock, M. (2019). Defining generations: Where Millennials end and Generation Z begins. Pew
Research Center. Retrieved from https://www.pewresearch.org/facttank/2019/01/17/where-millennials-end-and-generation-z-begins/
Duncan, K. A., Shooshtari, S., Roger, K. S., Fast, J., & Han, J. Y. (2020). The cost of caring:
out‐of‐pocket expenditures and financial hardship among Canadian carers. International
Journal of Care and Caring, 4(2): 141–166.
https://doi.org/10.1332/239788220X15845551975572
Dunkle, R.E., Feld., S. Lehning, A.J., Kim, H., Shen, H., and Kim, M. H. (2013) Does Becoming
an ADL Spousal Caregiver Increase the Caregiver’s Depressive Symptoms? Research on
Aging. 36(6), 655-682. https://doi.org/10.1177/0164027513516152
England, P., Levine, A., & Mishel, E. (2020). Progress toward gender equality in the United
States has slowed or stalled. Proceedings of the National Academy of Sciences of the
United States of America, 117(13), 6990-6997. https://doi.org/10.1073/pnas.1918891117
Estes, C. L. (2014) The Future of Aging Services in a Neoliberal Political. Generations: Journal
of the American Society on Aging, 38(2), 94-100. https://www.jstor.org/stable/26556056
Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced
Nursing, 62(1), 107-115. https://doi.org/10.1111/j.1365-2648.2007.04569.x
Family Caregiver Alliance. (n.d.). Caregiver depression: A silent health crisis. Family Caregiver
Alliance. Retrieved from https://www.caregiver.org/resource/caregiver-depression-silenthealth-crisis/
Family and Medical Leave Act of 1993, Pub. L. No. 103-3, 107 Stat. 6 (1993). Retrieved from
https://www.congress.gov/bill/103rd-congress/house-bill/1
Fan, Q., DuBose, L., Ory, M. G., Lee, S., Hoang, M.-N., Vennatt, J., Kew, C. L., Doyle, D., &
Falohun, T. (2023). Financial, legal, and functional challenges of providing care for
people living with dementia and needs for a digital platform: Interview Study Among
Family Caregivers. JMIR Aging, 6: e47577. https://doi.org/10.2196/47577
138
Farran, C. J., Gilley, D. W., McCann, J. J., Bienias, J. L., Lindeman, D. A., & Evans, D. A.
(2007). Efficacy of behavioral interventions for dementia caregivers. Western Journal of
Nursing Research, 29(8), 944–960. https://doi.org/10.1177/0193945907303084
Feinberg, L. R., & 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.
https://doi.org/10.1093/ppar/prz006
Fonseca, R., Mullen, K. J., Zamarro, G., & Zissimopoulos, J. (2012). What Explains the Gender
Gap in Financial Literacy? The Role of Household Decision Making. Journal of
Consumer Affairs, 46(1), 90-106. https:///.doi.org/10.1111/j.1745-6606.2011.01221
French, D., & Vigne, S. (2019). The causes and consequences of household financial strain: a
systematic review. International Review of Financial Analysis, 62, 150–156.
https://doi.org/0.1016/j.irfa.2018.09.008
French, E. B., McCauley, J., Aragon, M., Bakx, P., Chalkley, M., Chen, S. H., Christensen, B. J.,
Chuang, H., Côté-Sergent, A., De Nardi, M., Fan, E., Échevin, D., Geoffard, P. Y,
Gastaldi Ménager, C., Gørtz, M., Ibuka, Y., Jones, J. B., Kallestrup-Lamb, M., Karlsson,
M., Klein, T. J., de Lagasnerie, G., Michaud, P. C., O’Donnell, O., Rice, N., Skinner, J.
S., van Doorslaer, E., Ziebarth, N. R., & Kelly E. (2017). End‐of‐life Medical Spending
in Last Twelve months of Life is Lower than Previously Reported. Health Aff, 36(7),
1211‐1217. https://doi.org/10.1377/hlthaff.2017.0174
Friedman, E. M, Shih, R. A., Langa, K. M., & Hurd, M. D. (2015) U.S. prevalence and
predictors of informal caregiving for dementia. Journal of Health Affairs, 34(10),1637-
1641. https://doi.org/10.1377/hlthaff.2015.0510
Funk, L. M., & Hounslow, W. J. (2019). How do daughters interpret care as a public issue?
Exploring identity, emotion and discourse in the narratives of activist-inclined carers of
older parents. Community, Work & Family, 24(4), 455-470.
https://doi.org/10.1080/13668803.2019.1681939
Garrido, M. M., Balboni, T. A., Maciejewski, P. K., Bao, Y., & Prigerson, H. G. (2015). Quality
of life and cost of care at the end of life: The role of advance directives. Journal of Pain
and Symptom Management, 49(5), 828-835.
https://doi.org/10.1016/j.jpainsymman.2014.09.015
Gasiorowska, A. (2014). The relationship between objective and subjective wealth is moderated
by financial control and mediated by money anxiety. Journal of Economic Psychology,
43, 64–74. https://doi.org/10.1016/j.joep.2014.04.007
George, L. K., & L. P., Gwyther. (1986). Caregiver well-being: A multidimensional examination
of family caregivers of demented adults. The Gerontologist, 26: 253–259.
https://doi:10.1093/geront/26.3.253
139
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. The
Gerontologist, 55(2), 210-226. https://doi.org/10.1093/geront/gnu123
Glenn, N. M., Scott, L. A., Hokanson, T., Gustafson, K., Stoops, M. A., Day, B., & Nykiforuk,
C. I. J. (2021). Community intervention strategies to reduce the impact of financial strain
and promote financial well-being: A comprehensive rapid review. Global Health
Promotion, 28(1), 42-50. https://doi.org/10.1177/1757975920984182
Goodwin, R. M., Utz, R. L., Elmore, C. E., Ornstein, K. A., Tay, D. L., Ellington, L., Smith, K.
R., & Stephens, C. E. (2024). Leveraging existing datasets to advance family caregiving
research: Opportunities to measure what matters. Journal of Aging & Social Policy, 1–19.
Advance online publication. https://doi.org/10.1080/08959420.2024.2320043
Gordon, P. (2018). Caregivers of Alzheimer’s Disease Patients: A Qualitative Study of
Caregiver’s Perceptions on the Financial Stressors of Caregiving [Doctoral dissertation,
Northcentral University]. ProQuest Dissertations Publishing.
Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research:
Concepts, procedures, and measures to achieve trustworthiness. Nurse Education Today,
24(2), 105-112. https://doi.org/10.1016/j.nedt.2003.10.001
Greene, J. C., Caracelli, V. J., & Graham, W. F. (1989). Toward a Conceptual Framework for
Mixed-Method Evaluation Designs. Educational Evaluation and Policy Analysis, 11(3),
255-274. https://doi.org/10.3102/016237370110032
Greenfield, J. C., Hasche, L., Bell, L. M., & Johnson, H. (2018). Exploring how workplace and
social policies relate to caregivers’ financial strain. Journal of Gerontological Social
Work, 61(8), 849-866. https://doi.org/10.1080/01634372.2018.1487895
Gruber, J., & McGarry, K. M. (2023). Long-term Care in the United States. NBER Working
Papers 31881, National Bureau of Economic Research, Inc.
Guest, G., Bunce, A., & Johnson, L. (2006). How Many Interviews are Enough? an Experiment
with Data Saturation and Variability. Field Methods, 18(1), 59–82.
https://doi.org/10.1177/1525822X05279903
Gundersen, C., & Ziliak, J. P. (2015). Food Insecurity And Health Outcomes. Health Aff, 34(11),
1830-1839. https://doi.org/10.1377/hlthaff.2015.0645
Hailemariam, M., Bustos, T., Montgomery, B., Barajas, R., Evans, L. B., & Drahota, A. (2019).
Evidence-based intervention sustainability strategies: A systematic review.
Implementation Science, 14: 57. https://doi.org/10.1186/s13012-019-0910-6
Hamel, L., & Montero, A. (2023) The Affordability of Long-Term Care and Support Services:
Findings from a KFF Survey. Retrieved from https://www.kff.org/report-section/theaffordability-of-long-term-care-and-support-services-findings-from-a-kff-surveyfindings/
140
Hastert, T., Kyko, J., Ruterbusch, J., Robinson, J., Kamen, C., Nair, M., Thompson, H., &
Schwartz, A. (2022). Caregiver costs and financial burden in caregivers of African
American cancer survivors. Journal of Cancer Survivorship, 18(1), 1-10.
https://doi.org/10.1007/s11764-022-01271-3
Health and Retirement Study, public use dataset. (2023). Produced and distributed by the
University of Michigan with funding from the National Institute on Aging (grant number
NIA U01AG009740). Ann Arbor, MI.
Healthy People. (2020). Social Determinants of Health. Office of Disease Prevention and Health
Promotion. Retrieved from https://www.healthypeople.gov/2020/topicsobjectives/topic/social-determinants-of-health
Hepburn, K., Nocera, J., Higgins, M., Epps, F., Brewster, G. S., Lindauer, A., Morhardt, D.,
Shah, R., Bonds, K., Nash, R., Griffiths, P. C. (2021). Results of a Randomized Trial
Testing the Efficacy of Tele-Savvy, an Online Synchronous/Asynchronous
Psychoeducation Program for Family Caregivers of Persons Living with Dementia. The
Gerontologist, 62(4), 616–628. https://doi.org/10.1093/geront/gnab029
Hogan, D. B., Jetté, N., Fiest, K. M., Roberts, J. I., Pearson, D., Smith, E. E., Roach, P., Kirk, A.,
Pringsheim, T., & Maxwell, C. J. (2016). The prevalence and incidence of frontotemporal
dementia: A systematic review. Canadian Journal of Neurological Sciences, 43(Suppl 1),
S96-S109. https://doi.org/10.1017/cjn.2016.25
Hogstel, M. O, Curry, L. C., & Walker, C. (2006). Caring for Older Adults: The Benefits of
Informal Family Caregiving. Journal of Theory Construction & Testing, (9)2, 55-60.
https://doi.org/10.1177/0733464817750274
Hopwood, J., Walker, N., McDonagh, L., Rait, G., Walters, K., Iliffe, S., Ross, J., & Davies, N.
(2018). Internet-based interventions aimed at supporting family caregivers of people with
dementia: Systematic review. J Med Internet Res, 20(6), e216.
https://doi.org/10.2196/jmir.9548
Huang, C. Y., Sousa, V.D., Perng, S.J., Hwang, M.Y., Tsai, C.C., Huang, M.H., & Yao, S.Y.
(2009). Stressors, social support, depressive symptoms and general health status of
Taiwanese caregivers of persons with stroke or Alzheimer’s disease. Journal of Clinical
Nursing, 18, 502–511. https://doi.org/10.1111/j.1365-2702.2008.02443.x
Huang, S.S, Lee, M.C., Liao, Y.C., Wang, W.F., & Lai, T.J. (2012). Caregiver burden associated
with behavioral and psychological symptoms of dementia (BPSD) in Taiwanese elderly.
Archives of Gerontology and Geriatrics, 55 (1), 55–59.
https://doi.org/10.1016/j.archger.2011.04.009
Hurd, M. D., Martorell, P., Delavande, A., Mullen, K. J., & Langa, K. M. (2013). Monetary costs
of dementia in the United States. New England Journal of Medicine, 368(14), 1326-1334.
https://doi.org/10.1056/NEJMsa1204629
141
Jaldin, M. A., Balbim, G. M., Colin, S. J., Marques, I. G., Mejia, J., Magallanes, M., Rocha, J. S.
& Marquez, D. X. (2023). The influence of Latino cultural values on the perceived
caregiver role of family members with Alzheimer’s disease and related dementias.
Ethnicity & Health, 28(4), 619-633. https://doi.org/10.1080/13557858.2022.2115018
Jutkowitz, E., Pizzi, L. T., Popp, J., Prioli, K. K, Scerpella, D., Marx, K., Samus, Q., Piersol, C.
V. & Gitlin, L. N. (2021). A longitudinal evaluation of family caregivers’ willingness to
pay for an in-home nonpharmacologic intervention for people living with dementia:
results from a randomized trial. Int Psychogeriatr, 33(4),419-428.
https://doi.org/10.1017/S1041610221000089
Kahn, J. R., & Pearlin, L. I. (2006). Financial strain over the life course and health among older
adults. Journal of Health and Social Behavior, 47(1), 17–31.
https://doi.org/10.1177/002214650604700102
Kalipeni, J., & Kashen, J. (2022). Building Our Care Infrastructure for Equity, Economic
Recovery and Beyond. Retrieved from: https://caringacross.org/wpcontent/uploads/2020/09/Building-Our-Care-infrastructure_FINAL.pdf
Kally, Z., Cote, S. D., Gonzalez, J., Villarruel, M., Cherry, D. L., Howland, S., Higgins, M.,
Connolly, L., & Hepburn, K. (2014). The Savvy Caregiver Program: Impact of an
evidence-based intervention on the well-being of ethnically diverse caregivers. Journal of
Gerontological Social Work, 57(6-7), 681-693.
https://doi.org/10.1080/01634372.2013.850584
Karlawish, J. H., Casarett, D. J., James, B. D., Tenhave, T., Clark, C. M., & Asch, D. A. (2003).
Why would caregivers not want to treat their relative’s Alzheimer’s disease? Journal of
American Geriatric Society,51(10),1391-1397. https:///doi.org/10.1046/j.1532-
5415.2003.51456.x
Kaufman, J. E., Lee, Y., Vaughon, W., Unuigbe, A., & Gallo, W. T. (2019). Depression
Associated With Transitions Into and Out of Spousal Caregiving. The International
Journal of Aging and Human Development, 88(2), 127–149.
https://doi.org/10.1177/0091415018754310
Kelley, A. S., McGarry, K., Gorges, R., & Skinner, J. S. (2015). The burden of health care costs
for patients with dementia in the last 5 years of life. Annals of Internal Medicine,
163(10), 729-736. https://doi.org/10.7326/M15-0381
Khandelwal, N., Engelberg, R. A., Hough, C. L., Cox, C. E., & Curtis, J. R. (2020). The Patient
and Family Member Experience of Financial Stress Related to Critical Illness. Journal of
Palliative Medicine, 23(7), 972–976. https://doi.org/10.1089/jpm.2019.0369
Khatutsky, G., & Greene, M.E. (2019) How Many Long-Term-Care Surveys and Polls Do We
Need? Generations, (43)1, 23-30.
http://www.ingentaconnect.com/contentone/asag/gen/2019/00000043/00000001/art00005
142
Kim, Y., & Schulz, R. (2008). Family caregivers’ strains: comparative analysis of cancer
caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health, 20(5),
483-503. https://doi.org/10.1177/0898264308317533
Kingdon, J. (1984). Agendas, Alternatives, and Public Policies. Boston, USA: Little, Brown.
Lai, D. W. L. (2012). Effect of financial costs on caregiving burden of family caregivers of older
adults. SAGE Open, October-December 2012, 1–14.
https://doi.org/10.1177/2158244012470467
Landale, N. S., Oropesa, R. S., & Bradatan, C. (2006). Hispanic families in the United States:
Family structure and process in an era of family change. In M. Tienda & F. Mitchell
(Eds.), Hispanics and the Future of America (pp. 138-178). National Research Council
(US) Panel on Hispanics in the United States, National Academies Press.
Lashley, T., Rohrer, J. D., Mead, S., & Revesz, T. (2015). Review: An update on clinical,
genetic, and pathological aspects of frontotemporal lobar degenerations. Neuropathology
and Applied Neurobiology, 41, 858-881. https://doi.org/10.1111/nan.12250
Lavela, S. L., & Ather, N. (2010). Psychological health in older adult spousal caregivers of older
adults. Journal of Chronic Illness, 6, 67-80. https://doi.org/10.1177/17423953093569
Lee, Y., Tang, F., Kim, K. H., & Albert, S. M. (2014). The vicious cycle of parental caregiving
and financial well-being: A longitudinal study of women. Journals of Gerontology,
Series B: Psychological Sciences and Social Sciences, 70(3), 425–431.
https://doi.org/10.1093/geronb/gbu001
Lee, Y., & Zurlo, K. A. (2014). Spousal Caregiving and Financial Strain Among Middle-Aged
and Older Adults. The International Journal of Aging and Human Development, 79(4),
302–321. https://doi.org/10.1177/0091415015574181
Legare, F., Ratte, S., Stacey, D., Kryworuchko, J., Gravel, K., Graham, I. D., & Turcotte, S.
(2010). Interventions for improving the adoption of shared decision making by healthcare
professionals. Cochrane Database of Systematic Reviews, 5, CD006732
https://doi.org/10.1002/14651858.CD006732.pub2
Leggett, A. N., Sonnega, A. J., and Lohman, M. C. (2020). Till Death Do Us Part: Intersecting
Health and Spousal Dementia Caregiving on Caregiver Mortality Journal of Aging
Health 32(7-8), 871-879. https://doi.org/10.1177/0898264319860975
Lepore, M., & Chattopadhyay, J. (2020). Political Impediments to Aging in Place: The Example
of Informal Caregiving Policy. Public Policy & Aging Report, 30(2), 56-61.
https://doi.org/10.1093/ppar/praa002
Lepore, M. J., Rochford, H. (2019). Addressing food insecurity and malnourishment among
older adults: the critical role of older Americans act nutrition programs. Public Pol.
Aging Rep, 29 (2), 56–61. https://doi.org/10.1093/ppar/prz003
143
Leszko, M. (2019). The Effectiveness of Psychoeducational and Financial Intervention to
Support Caregivers of Individuals With Alzheimer’s Disease in Poland. Innov Aging,
3(3), igz026. https://doi.org/10.1093/geroni/igz026
Levitsky, S.R. (2014). Caring for Our Own – Why There is No Political Demand for New
American Social Welfare Rights. Oxford University Press.
Lipson, D. (2015). Chapter 9 - The Policy and Political Environment of Family Caregiving: A
Glass Half Full. In J. Gaugler & R. Kane (Eds.), Family caregiving in the new normal
(pp. 137-152). Elsevier. https://doi.org/10.1016/B978-0-12-417046-9.00009-X
Lopez, M. H., Krogstad, J., & Passell, J. S. (2022). Who is Hispanic? Retrieved from
https://www.pewresearch.org/fact-tank/2022/09/15/who-is-hispanic/
Li, Y., Burr, J. A., & Miller, E.A. (2017). Pension Plan Types and Financial Literacy in Later
Life. The Gerontologist, 59(2), 260-270. https://doi.org/10.1093/geront/gnx135
Liu, J. (2021). Spouse and Adult-Child Dementia Caregivers in Chinese American Families:
Who Are More Stressed Out? Journal of the American Medical Directors Association,
22(7), 1512–1517. https://doi.org/10.1016/j.jamda.2020.12.012
Liu, R., Chi, I., and Wu, S. (2023) Impacts of Caregiving on Health of New Spousal Caregivers
to Older Adults in the United States: A Coarsened Exact Matching Analysis. The
Journals of Gerontology 78(7), 1257-1268. https://doi.org/10.1093/geronb/gbad064
Liu, Y., Dokos, M., Fauth, E. B., Lee, Y. G., & Zarit, S. H. (2019). Financial Strain,
Employment, and Role Captivity and Overload Over Time Among Dementia Family
Caregivers. Gerontologist, 59(5), e512-e520. https://doi.org/10.1093/geront/gnz099
Logue, B. J. (1991). Women at risk: predictors of financial stress for retired women workers.
Gerontologist; 31(5), 657-665. https://doi.org/10.1093/geront/31.5.657
Macy, J. T., Chassin, L., & Presson, C. C. (2013). Predictors of health behaviors after the
economic downturn: A longitudinal study. Social Science & Medicine, 89, 8–15.
https://doi.org/10.1016/j.socscimed.2013.04.020
Mage, S., Benton, D., Gonzalez, A., Zaragoza G., Wilber, K., Tucker-Seeley, R., & Meyer, K.
(2023). “I Lay Awake at Night”: Latino Family Caregivers’ Experiences Covering Out-ofPocket Costs When Caring for Someone Living With Dementia. The Gerontologist,
gnad011. https://doi.org/10.1093/geront/gnad011
Martinez, I. L., & Acosta Gonzalez, E. (2022). Care v. Caring: Obligation, Duty, and Love
Among Latino Alzheimer’s Family Caregivers. Journal of Applied Gerontology,
7334648221084998. https://doi.org/10.1177/07334648221084998
144
Martinez, I. L., Acosta Gonzalez, E., Quintero, C., & Vania, M. J. (2022). The Experience of
Alzheimer’s Disease Family Caregivers in a Latino Community: Expectations and
Incongruences in Support Services. J Gerontol B Psychol Sci Soc Sci, 77(6), 1083-1093.
https://doi.org/10.1093/geronb/gbab170
Marshall, S., McGarry K, & Skinner J. (2010) The risk of out‐of‐pocket health care expenditure
at end of life. National Bureau of Economic Research. Working Paper 16170.
https://doi.org/10.3386/w16170
McCabe, M., You, E., & Tatangelo, G. (2016). Hearing their voice, a systematic review of
dementia family caregivers’ needs. The Gerontologist, 56, 70–88.
https://doi.org/10.1093/geront/gnw078
McKeith, I. (2004). Dementia with Lewy bodies. Dialogues in Clinical Neuroscience, 6(3), 333-
341. https://doi.org/10.31887/DCNS.2004.6.3/imckeith
McMahan, R. D., Tellez, I., & Sudore, R. L. (2021). Deconstructing the complexities of advance
care planning outcomes: what do we know and where do we go? A scoping review.
Journal of the American Geriatrics Society, 69(1), 234-244.
https://doi.org/10.1111/jgs.16801
Mehdipanah, R., Briceno, E. M., Gonzales, X. F., Heeringa, S. G., Levine, D. A., Langa, K. M.,
Garcia, N., Longoria, R. & Morgenstern, L. B. (2021). Dementia care needs for
individuals and caregivers among Mexican Americans and non-Hispanic Whites. Aging
& Mental Health, 26(8), 1630-1641. https://doi.org/10.1080/13607863.2021.1925222
Mendez-Luck, C. A., & Anthony, K. P. (2016). Marianismo and Caregiving Role Beliefs Among
U.S.-Born and Immigrant Mexican Women. Journal of Gerontol B Psychol Sci Soc Sci,
71(5), 926-935. https://doi.org/https://doi.org/10.1093/geronb/gbv083
Merrill Lynch & Age Wave. (2017). The journey of caregiving: Honor, responsibility and
financial complexity. Life Stage Series: Caregiving.
images.em.bankofamerica.com/HOST-03-19-0704/AgeWaveCaregivingWhitepaper.pdf
MetLife Mature Market Group, National Alliance for Caregiving, University of Pittsburgh
Institute on Aging. (2011). The MetLife Study of Working Caregivers and Employer
Health Costs: Double Jeopardy for Baby Boomers Caring for their Parents.
https://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-workingcaregivers.pdf
Meyer, K., Rath, L., Gassoumis, Z., Kaiser, N., & Wilber, K. (2019). What Are Strategies to
Advance Policies Supporting Family Caregivers? Promising Approaches From a
Statewide Task Force. Journal of Aging & Social Policy, 31(1), 66-84.
https://doi.org/10.1080/08959420.2018.1485395
Meyer, K., Gassoumis, Z., & Wilber, K. (2021). A comparison of negative financial events
experienced by carers and non-carers following onset of the great recession. International
Journal of Care and Caring. https://doi.org/10.1332/239788221X16215259065673
145
Meyer, K., Gonzalez, A., & Benton, D. (2023). Qualitative Evaluation of Family Caregivers’
Experiences Participating in Knowledge and Interpersonal Skills to Develop Exemplary
Relationships (KINDER): Web-Based Intervention to Improve Relationship Quality.
JMIR Form Res, 7:e42561. https://doi.org/10.2196/42561
Meyer, K., Zachmeyer, M., Paccione, J., Cardenas, C., Zernial, C., & Smith, C. (2023). A
Community Initiative to Engage Employers to Support Caregiving Employees and Build
an Advocacy Alliance. Journal of Aging & Social Policy, 1-15
Meyer, K., Mage, S., Gonzalez, A., Zauszniewski, J., Rhodes, S., Puchalt, J.P., Wilber, K., Song,
L., Puga, F., & Benton, D. (2024). A Pilot Study of a Culturally Tailored Financial WellBeing Intervention Among Latino Family Caregivers. Submitted.
Morse, J. M. (1991). Approaches to Qualitative-Quantitative Methodological Triangulation.
Nursing Research, 40(2), 120-123.
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. https://doi.org/10.1016/j.gerinurse.2016.06.017
Nam, I. (2016). Financial Difficulty Effects on Depressive Symptoms Among Dementia Patient
Caregivers. Community Mental Health Journal, 52(8), 1093-1097.
https://doi.org/10.1007/s10597-016-0033-3
Napoles, A. M., Chadiha, L., Eversley, R., & Moreno-John, G. (2010). Reviews: Developing
Culturally Sensitive Dementia Caregiver Interventions: Are We There Yet? American
Journal of Alzheimer’s Disease & Other Dementias.
https://doi.org/10.1177/1533317510370957
National Academies of Sciences, Engineering, and Medicine (NASEM). (2016). Families Caring
for an Aging America. Washington, DC: The National Academies Press.
https://doi.org/10.17226/23606
National Academies of Sciences, Engineering, and Medicine (NASEM). (2021). Meeting the
Challenge of Caring for Persons Living with Dementia and Their Care Partners and
Caregivers: A Way Forward. T. N. A. Press.
National Academies of Sciences, Engineering, and Medicine (NASEM). (2018). Considerations
for the design of a systematic review of care interventions for individuals with dementia
and their caregivers: Letter report. Washington, DC: The National Academies Press.
https://doi.org/10.17226/25326
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
146
National Alliance for Caregiving (NAC) & Alzheimer’s Association. (2017). Dementia
Caregiving in the U.S.
http://www.caregiving.org/wp‐content/uploads/2017/02/DementiaCaregivingFINAL_WE
B.pdf
National Alliance for Caregiving (NAC) and the AARP Public Policy Institute (AARP). (2020).
Caregiving in the U.S. Retrieved from https://www.aarp.org/ppi/info-2020/caregiving-inthe-united-states.html
National Institute on Aging. (n.d.). Understanding types of dementia. U.S. Department of Health
and Human Services, National Institutes of Health. Retrieved from
https://www.nia.nih.gov/sites/default/files/understanding-types-dementia_0.pdf
National Institute on Aging. (2023). Caring for a Person with Alzheimer’s Disease: Your Easyto-Use Guide from the National Institute on Aging. Retrieved from
https://www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease/aboutguide
National Institute of Mental Health. (2022). Major Depression. Retrieved from
https://www.nimh.nih.gov/health/statistics/major-depression.
Netemeyer, R. G., Warmath, D., Fernandes, D., & Lynch, J. G. (2018). How am I doing?
Perceived financial well-being, its potential antecedents, and its relation to overall wellbeing. Journal of Consumer Research, 45(1), 68–89. https://doi.org/10.1093/jcr/ucx109
Ng, W., & Diener, E. (2014). What matters to the rich and the poor? Subjective well-being,
financial satisfaction, and postmaterialist needs across the world. Journal of Personality
and Social Psychology, 107(2), 326–338. https://doi.org/10.1037/a0036856
Norris, T., Adjaye-Gbewonyo, D., & Bottoms-McClain, L. (2023). Early release of selected
estimates based on data from the 2023 National Health Interview Survey. National Center
for Health Statistics, U.S. Department of Health and Human Services.
Nuckols, T. K., Keeler, E., Morton, S., Anderson, L., Doyle, B. J., Pevnick, J., Booth, M.,
Shanman, R., Arifkhanova, & A., Shekelle. (2017). Economic Evaluation of Quality
Improvement Interventions Designed to Prevent Hospital Readmission. JAMA Internal
Medicine, 177: 975. https://doi.org/10.1001/jamainternmed.2017.1136
Olazaran, J., Reisberg, B., Clare, L., Cruz, I., Pena-Casanova, J., Del Ser, T., Woods, B., Beck,
C., Auer, A., Lai, C., Spector, A., Fazio, S., Bond, J., Kivipelto, M., Brodaty, H., Rojo, J.
M., Collins, H., Teri, L., Mittelman, M., Orrell, M., Feldman, H. H., & Muniz, R. (2010).
Nonpharmacological therapies in Alzheimer’s disease: A systematic review of efficacy.
Dementia and Geriatric Cognitive Disorders, 30(2), 161-178.
https://doi.org/10.1159/000316119
O’Neill, S., Kreif, N., Grieve, R., Sutton, M., & Sekhon, J. S. (2016). Estimating causal effects:
considering three alternatives to difference-indifferences estimation. Heal Serv Outcomes
Res Methodology. 2016;16(1-2), 1-21. https://doi.org/0.1007/s10742-016-0146-8
147
Onken, L. S., & Shoham, V. (2015). Technology and the Stage Model of Behavioral Intervention
Development. Behavioral Health Care and Technology: Using Science-Based
Innovations to Transform Practice (New York, 2014; online edn, Oxford Academic, 1
Mar. 2016). https://doi.org/10.1093/med/9780199314027.003.0001
Ornstein, K. A., Wolff, J. L., Bollens-Lund, E., Rahman, O., & Kelley, A. S. (2019). Spousal
Caregivers Are Caregiving Alone In The Last Years Of Life. Health Affairs, 38(6), 964-
972. https://doi.org/10.1377/hlthaff.2019.00087
Parker, L. J., Marx, K. A., Nkimbeng, M., Johnson, E., Koeuth, S., Gaugler, J. E., & Gitlin, L. N.
(2023). It’s More Than Language: Cultural Adaptation of a Proven Dementia Care
Intervention for Hispanic/Latino Caregivers. The Gerontologist, 63(3), 558–567.
https://doi.org/10.1093/geront/gnac120
Patel, M. R., Jagsi, R., Resnicow, K., Smith, S. N., Hamel, L. M., Su, C., Griggs, J. J., Buchanan,
D., Isaacson, N., & Torby, M. (2021). A Scoping Review of Behavioral Interventions
Addressing Medical Financial Hardship. Population Health Manag, 24(6), 710-721.
https://doi.org/10.1089/pop.2021.0043
Pearson, C. F., Quin, C. C., Loganathan, S., Datta, A. R., Mace, B. B., & Grabowski, D. C.
(2019). The Forgotten Middle: Many Middle-Income Seniors Will Have Insufficient
Resources For Housing And Health Care. Health Affairs, 38(5), 851-859.
https://doi.org/10.1377/hlthaff.2018.05233
Peck, B. M., Asch, D. A, Goold, S. D, Roter, D. L., Ubel, P.A., McIntyre, L.M., Abbott, K. H.,
Hoff, J.A., Koropchak, C. M., & Tulsky, J. A. (2001). Measuring patient expectations:
does the instrument affect satisfaction or expectations. Med Care, 39(1),100-108.
https://doi.org/10.1097/00005650-200101000-00011
Percheski, C., & Gibson-Davis, C. (2020). A Penny on the Dollar: Racial Inequalities in Wealth
among Households with Children. Socius, 6. https://doi.org/10.1177/2378023120916616
Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in
psychological health and physical health: a meta-analysis. Psychol Aging, 18(2), 250-267.
http://doi.org/10.1037/0882-7974.18.2.250
Pinquart, M., & Sörensen, S. (2007). Correlates of physical health of informal caregivers: a
meta-analysis. Journal of Gerontol B Psychol Sci Soc Sci, 62(2), 126-137.
https://doi.org/10.1037/0882-7974.18.2.250
Pinquart, M., & Sörensen, S. (2011). Spouses, adult children, and children-in-law as caregivers
of older adults: a meta-analytic comparison. Psychol Aging, 26(1),1-14.
www.https://doi.org/10.1037/a0021863
148
Ploeg, J., Northwood, M., Duggleby, W., McAiney, C. A., Chambers, T., Peacock, S., Fisher, K.,
Ghosh, S., Markle-Reid, M., Swindle, J., Williams, A., & Triscott, J. A. C. (2020).
Caregivers of older adults with dementia and multiple chronic conditions: Exploring their
experiences with significant changes. Dementia, 19(8), 2601–2620.
https://doi.org/10.1177/1471301219834423
Powerful Tools for Caregivers (PTC). (2013). Retrieved
from: https://www.powerfultoolsforcaregivers.org/about
Quiroz, Y. T., Solis, M., Aranda, M. P., Arbaje, A. I., Arroyo-Miranda, M., Cabrera, L. Y.,
Carrasquillo, M. M., Corrada, M. M., Crivelli, L., Diminich, E. D., Dorsman, K. A.,
Gonzales, M., González, H. M., Gonzalez-Seda, A. L., Grinberg, L. T., Guerrero, L. R.,
Hill, C. V., ... Sexton, C. (2022). Addressing the disparities in dementia risk, early
detection and care in Latino populations: Highlights from the second Latinos &
Alzheimer’s Symposium. Alzheimer’s & Dementia, 18(9), 1677–1686.
https://doi.org/10.1002/alz.12589
Rainville, C., Skufca, L., & Mehegan, L. (2016). Family Caregiving and Out-of-Pocket Costs,
2016 Report.
http://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2016/familycaregiving-cost-survey-res-ltc.pdf
Reaves, E. L., & Musumeci, M. B. (2015). Medicaid and Long-Term Services and Supports: A
Primer. Kaiser Family Foundation. Retrieved from http://www.kff.org
Reid, E., Ghoshal A, Khalil A, et al. (2002). Out‐of‐pocket costs near end of life in low‐ and
middle‐income countries: a systematic review. PLOS Glob Public Health. 2(1),
e0000005. https://doi.org/10.1371/journal.pgph.0000005
Reinhard, S. C., Feinberg, L. F., Houser, A., Choula, R., & Evans, M. (2019). Valuing the
invaluable, 2019 update charting a path forward. AARP Public Policy Institute.
https://doi.org/10.26419/ppi.00082.001
Reinhard, S. C., Young, H. M., Levine, C., et al. (2019). Home alone revisited: Family
caregivers providing complex care. AARP Public Policy Institute. Retrieved from
https://www.aarp.org/content/dam/aarp/ppi/2019/04/home-alone-revisited-familycaregivers-providing-complex-care.pdf
Reinhard, S. C., Caldera, S., Houser, A., and Choula, R. B. (2023). Valuing the Invaluable: 2023
Update, Strengthening Supports for Family Caregivers. AARP Public Policy Institute.
Retrieved from https://www.aarp.org/content/dam/aarp/ppi/2023/3/valuing-theinvaluable-2023-update.doi.10.26419-2Fppi.00082.006.pdf
Riffin, C., Van Ness, P. H., Wolff, J. L., & Fried, T. (2019). Multifactorial examination of
caregiver burden in a national sample of family and unpaid caregivers. Journal of the
American Geriatrics Society, 67(2), 277-283. https://doi.org/10.1111/jgs.15664
149
Rigby, T., Ashwill, R. T., Johnson, D. K., & Galvin, J. E. (2019). Differences in the experience
of caregiving between spouse and adult child caregivers in dementia with Lewy Bodies.
Innovation in Aging, 3(3). https://doi.org/10.1093/geroni/igz027
Rocco, P. (2017). Informal Caregiving and the Politics of Policy Drift in the United States.
Journal of Aging Social Policy, 29(5), 413-432.
https://doi.org/10.1080/08959420.2017.1280748
Rocha, C. G., Perrenoud, B., & Ramelet, A.-S. (2022). Perceptions of Burden and Preparedness
for Caregiving among the Family Caregivers of Hospitalised Older Adults: A CrossSectional Study. Geriatrics, 7(19). https://doi.org/10.3390/geriatrics7010019
Rose, K. C. & L. N. Gitlin (2017). Background characteristics and treatment-related factors
associated with treatment success or failure in a non-pharmacological intervention for
dementia caregivers. International Psychogeriatrics 29(6), 1005-1014.
https://doi.org/10.1017/S1041610217000205
Rote, S. & Moon, H. (2018). Racial/Ethnic Differences in Caregiving Frequency: Does
Immigrant Status Matter? The Journals of Gerontology, Series B: Social Sciences, 73(6),
1088-1098. https://doi.org/10.1093/geronb/gbw106
Rote, S. M., Angel, J. L., Moon, H., & Markides, K. (2019). Caregiving Across Diverse
Populations: New Evidence From the National Study of Caregiving and Hispanic EPESE.
Innovation in Aging, 3(2). https://doi.org/10.1093/geroni/igz033
Roth, D. L., Perkins, M., Wadley, V.G., Temple, E. M., & Haley, W.E. (2009) Family caregiving
and emotional strain: associations with quality of life in a large national sample of
middle-aged and older adults. Qual Life Res, 18(6), 679-688.
https://doi.org/10.1007/s11136-009-9482-2
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.
https://doi.org/10.1093/geront/gnu177
Ryu, S., & Fan, L. (2023). The Relationship Between Financial Worries and Psychological
Distress Among U.S. Adults. Journal of Family and Economic Issues, 44(1), 16-33.
https://doi.org/10.1007/s10834-022-09820-9
Samia, L. W., Hepburn, K., & Nichols, L. (2012). “Flying by the seat of our pants”: What
dementia family caregivers want in an advanced caregiver training program. Research in
Nursing & Health, 35, 598-609. https://doi.org/10.1002/nur.21504
Savoy, E. J., Reitzel, L. R., Nguyen, N., Advani, P. S., Fisher, F. D., Wetter, D. W., Cuevas, A.
G., & McNeill, L. H. (2014). Financial strain and self-rated health among Black adults.
American Journal of Health Behavior, 38(3), 340–350.
https://doi.org/10.5993/AJHB.38.3.3
150
Scharlach, A. E., Kellam, R., Ong, N., Baskin, A., Goldstein, C., & Fox, P. J. (2006). Cultural
attitudes and caregiver service use: lessons from focus groups with racially and ethnically
diverse family caregivers. Journal of Gerontological Social Work, 47(1-2), 133-156.
https://doi.org/10.1300/J083v47n01_09
Schulz, S., and Martire, L. M. (2004). Family Caregiving of Persons With Dementia: Prevalence,
Health Effects, and Support Strategies. American Journal of Geriatric Psychiatry 12(3),
240-249. https://doi.org/10.1176/appi.ajgp.12.3.240
Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M, & Monin, J. K. (2020). Family Caregiving
for Older Adults. Annu Rev Psychol, 71, 635-659. https://doi.org/10.1146/annurev-psych010419-050754
Sekhon, M., Cartwright, M., & Francis, J. J. (2017) Acceptability of healthcare interventions: an
overview of reviews and development of a theoretical framework. BMC Health Serv Res
17, 88. https://doi.org/10.1186/s12913-017-2031-8
Sheehan, O. C, Haley, W. E., Howard, V. J, Huang, J., Rhodes, J. D., Roth, D. L. (2021). Stress,
Burden, and Well-Being in Dementia and Nondementia Caregivers: Insights From the
Caregiving Transitions Study. The Gerontologist 61(5), 670-679.
https://doi.org/10.1093/geront/gnaa108
Shilton, T. (2006). Advocacy for physical activity--from evidence to influence. Promot Educ,
13(2), 118-26. https://doi.org/10.1177/10253823060130020106
Semple, S. J. (1992). Conflict in Alzheimer’s Caregiving Families: Its Dimensions and
Consequences. The Gerontologist, 32(5), 648-655.
https://doi.org/10.1093/geront/32.5.648
Skufca, L., & Rainville, C. (2021). Caregiving Out-of-Pocket Costs.
https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2021/familycaregivers-cost-survey-2021.doi.10.26419-2Fres.00473.001.pdf
Sorensen, S., Duberstein, P., Gill, D., & Pinquart, M. (2006). Dementia care: mental health
effects, intervention strategies, and clinical implications. The Lancet Neurology, 5, 961-
973. https://doi.org/10.1016/s1474-4422(06)70599-3
Spillman, B. C., & Long, S. K. (2009). Does high caregiver stress predict nursing home entry?
Inquiry, 46(2), 140-161. https://doi.org/https://doi.org/10.5034/inquiryjrnl_46.02.140
Spillman, B. C., Allen, E. H., & Favreault, M. (2020). Informal caregiver supply and
demographic changes: Review of the literature. Prepared for Office of Behavioral Health,
Disability, and Aging Policy, Office of the Assistant Secretary for Planning and
Evaluation, U.S. Department of Health and Human Services.
Strough, J., Wilson, J., & Bruine de Bruin , W. (2020). Aging and Financial Decision Making. In
T. Zaleskiewicz & J. Traczyk (Eds.), Psychological Perspectives on Financial Decision
Making. https://doi.org/https://doi.org/10.1007/978-3-030-45500-2_8
151
Sun, F., Hilgeman, M. M., Durkin, D. W., Allen, R. S., & Burgio, L. D. (2009). Perceived
income inadequacy as a predictor of psychological distress in Alzheimer’s caregivers.
Psychol Aging, 24(1), 177-183. https://doi.org/10.1037/a0014760
Szanton, S. L., Allen, J. K., Thorpe, R. J., Jr., Seeman, T., Bandeen-Roche, K., & Fried, L. P.
(2008). Effect of financial strain on mortality in community-dwelling older women.
Journal of Gerontology: Series B, Psychological Sciences and Social Sciences, 63(6),
S369–S374. https://doi.org/10.1093/geronb/63.6.s369
Tang, H., Chio, I., Chang, H., Mao, F., Chen, H., Yip, K., & Hwang, P. (2018). Caregiver active
participation in psychoeducational intervention improved caregiving skills and
competency. Geriatrics & Gerontology International, 18(5), 750-757.
https://doi.org/10.1111/ggi.13246
Tang, W. K., & Chan, C.Y.J. (2016). Effects of psychosocial interventions on self‐efficacy of
dementia caregivers: a literature review. International Journal of Geriatric Psychiatry 31,
475–493. https://doi.org/10.1002/gps.4352
Tashakkori, A., & Teddlie, C. (2003). Handbook of Mixed Methods in Social & Behavioral
Research. Thousand Oaks, CA: Sage Publications.
Templeman, M. E., Badana, A. N., & Haley, W. E. (2020). The relationship of caregiving to
work conflict and supervisor disclosure with emotional, physical, and financial strain in
employed family caregivers. Journal of Aging and Health. 32(7-8), 698-707.
https://doi.org/10.1177/0898264319848579
Thomas, K. S., & Applebaum, R. (2015). Long-term Services and Supports (LTSS): A Growing
Challenge for an Aging America. Public Policy & Aging Report, 25(2), 56-62.
https://doi.org/10.1093/ppar/prv003
Timm, L., Annerstedt, K. S., Ahlgren, J. Á., Absetz, P., Alvesson, H. M., Forsberg, B. C., &
Daivadanam, M. (2022). Application of the Theoretical Framework of Acceptability to
assess a telephone-facilitated health coaching intervention for the prevention and
management of type 2 diabetes. PLoS One, 17(10), e0275576.
https://doi.org/10.1371/journal.pone.0275576
Torres, V. N., Williams, E. C., Ceballos, R. M., Donovan, D. M., & Ornelas, I. J. (2020).
Participant Satisfaction and Acceptability of a Culturally Adapted Brief Intervention to
Reduce Unhealthy Alcohol Use Among Latino Immigrant Men. American Journal of
Men’s Health, 14(3). https://doi.org/10.1177/1557988320925652
Tucker-Seeley, R. D., Li, Y., Subramanian, S. V., & Sorensen, G. (2009). Financial hardship
and mortality among older adults using the 1996–2004 Health and Retirement Study.
Annals of Epidemiology, 19(12), 850–857.
https://doi.org/10.1016/j.annepidem.2009.08.003
152
Tucker-Seeley, R. D., & Thorpe, R. J. (2019). Material-Psychosocial-Behavioral Aspects of
Financial Hardship: A Conceptual Model for Cancer Prevention. Gerontologist, 59(Suppl
1), S88-S93. https://doi.org/10.1093/geront/gnz033
Turner, R. M., Hinton, L., Gallagher-Thompson, D., Tzuang, M., Tran, C., & Valle, R. (2015).
Using an emic lens to understand how Latino families cope with dementia behavioral
problems. American Journal of Alzheimer’s Disease and Other Dementias, 30(5), 454–
462. https://doi.org/10.1177/153331751456611
United States. (1978). Older Americans Act of 1965, as amended. Washington, D.C.
Administration on Aging, Office of Human Development Services, U.S. Department of
Health, Education, and Welfare.
United States Census Bureau. (2018). Hispanic Population Projected to More than Double by
2060. Retrieved from
https://www.census.gov/library/visualizations/2018/comm/hispanic-projected-pop.html
United States Census Bureau. (2018). Older people projected to outnumber children for first time
in U.S. history. Retrieved from https://www.census.gov/newsroom/pressreleases/2018/cb18-41-population-projections.html
United States Census Bureau. (2021). Survey of Income and Program Participation (SIPP), 2021.
U.S. Census Bureau. Retrieved from https://www.census.gov/programs-surveys/sipp.html
United States Census Bureau. (2021). QuickFacts: United States. Retrieved from
https://www.census.gov/quickfacts/fact/table/US/RHI125221
United States Code. (2024). Spousal impoverishment protections under Medicaid, 42 U.S.C. §
1396r-5.
United States Congress. (2018). RAISE Family Caregivers Act, Pub. L. No. 115-119, 132 Stat.
28. https://acl.gov/sites/default/files/about-acl/2018-10/PLAW-115publ119%20-
%20RAISE.pdf
United States Department of Health & Human Services. (n.d.). Prior HHS Poverty Guidelines
and Federal Register References. Retrieved from https://aspe.hhs.gov/topics/povertyeconomic-mobility/poverty-guidelines/prior-hhs-poverty-guidelines-federal-registerreferences
Van’t Leven, N., Prick, A. E., Groenewoud, J. G., Roelofs, P. D., De Lange, J., & Pot, A. M.
(2013). Dyadic interventions for community-dwelling people with dementia and their
family caregivers: a systematic review. International Psychogeriatrics, 25(10), 1581-
1603. https://doi.org/10.1017/S1041610213000860
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.
https://doi.org/10.3389/fpsyg.2017.00585
153
Vellone, E., Piras, G., Talucci, C., & Cohen, M. Z. (2008). Quality of life for caregivers of
people with Alzheimer’s disease. Journal of Advanced Nursing 61(2), 222-231.
https://doi.org/10.1111/j.1365-2648.2007.04494.x
Vera-Toscano, E., Ateca-Amestoy, A., & Serrano-Del-Rosal, E. (2006). Building Financial
Satisfaction. Social Indicators Research: An International and Interdisciplinary Journal
for Quality-of-Life Measurement, 77(2), 211-243. https://doi.org/10.1007/s11205-005-
2614-3
Vespa, J. (2019). The U.S. Joins Other Countries With Large Aging Populations. Retrieved
online from: https://www.census.gov/library/stories/2018/03/graying-america.html
Viola, M., Gang, J., Maciejewski, P. K., & Prigerson, H. G. (2023) Associations of financial
hardship with suicidal ideation among bereaved cancer caregivers. J Psychosoc Oncol,
41(2), 226-234. https://doi.org/10.1080/07347332.2022.2067803
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
Wallace, R. B., & Herzog, A. R. (1995). Overview of the health measures in the Health and
Retirement Study. The Journal of Human Resources, 30, S84–S107.
https://doi.org/10.2307/146279
Wakabayashi, C., & Donato, K. M. (2006). Does caregiving increase poverty among women in
later life? Evidence from the Health and Retirement Survey. Journal of Health and Social
Behavior, 47(3), 258-274.
Weida, E. B, Phojanakong, P., Patel, F., & Chilton, M. (2020) Financial health as a measurable
social determinant of health. PLoS One, 15(5), e0233359.
https://doi.org/10.1371/journal.pone.0233359
Weisshaar, K. (2018). From Opt Out to Blocked Out: The Challenges for Labor Market Re-entry
after Family-Related Employment Lapses. American Sociological Review, 83(1), 34-60.
https://doi.org/10.1177/0003122417752355
Wennberg, A., Dye, C., & Pham, H. (2015). Alzheimer’s Patient Familial Caregivers: A Review
of Burden and Interventions. Health & Social Work, 40(4), e162-e169.
https://doi.org/10.1093/hsw/hlv062
White, C. L., Barrera, A., Turner, S., Glassner, A., Brackett, J., Rivette, S., & Meyer, K. (2022).
Family caregivers’ perceptions and experiences of participating in the learning skills
together intervention to build self-efficacy for providing complex care. Geriatr Nurs, 45,
198-204. https://doi.org/10.1016/j.gerinurse.2022.04.012
154
Williams, V. F., Smith, A. A., Villanti, A. C., Rath, J. M., Hair, E. C., Cantrell, J., Teplitskaya,
L., & Vallone, D. M. (2017). Validity of a subjective financial situation measure to assess
socioeconomic status in US young adults. Journal of Public Health Management and
Practice, 23(5), 487-495. https://doi.org/10.1097/PHH.0000000000000468
Willert, B., & Minnotte, K. L. (2021). Informal caregiving and strains: Exploring the impacts of
gender, race, and income. Applied Research in Quality of Life, 16:943-964.
https:/doi.org/10.1007/ s11482-019-09786-1.
Willis, R., Khambhaita, P., Pathak, P., & Evandrou, M. (2015). Satisfaction with social care
services among South Asian and White British older people: the need to understand the
system. Ageing and Society, 36(7), 1364-1387.
https://doi.org/https://doi.org/10.1017/S0144686X15000422
Wolff, J. L., Dy, S. M., Frick, K. D., & Kasper, J. D. (2007). End-of-Life Care: Findings From a
National Survey of Informal Caregivers. Arch Intern Med, 167(1), 40–46.
https://doi.org/10.1001/archinte.167.1.40
World Health Organization (WHO). (2017). Global action plan on the public health response to
dementia 2017–2025. Geneva: World Health Organization. Licence: CC BY-NC-SA 3.0
IGO.
Wu, S., Vega, W. A., & Jin, H. (2016). Latinos and Alzheimer’s Disease: New Numbers Behind
the Crisis. (2016). USC Edward R. Roybal Institute on Aging and the Latinos Against
Alzheimer’s Network. https://www.usagainstalzheimers.org/sites/default/files/Latinosand-AD_USC_UsA2-Impact-Report.pdf
Yardley, L., Morrison, L., Bradbury, K., Muller, I., & Theodorou, M. (2015). The person-based
approach to intervention development: Application to digital health-related behavior
change interventions. Journal of Medical Internet Research, 17(1), e30. https://
doi.org/10.2196/jmir.4055
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.
https://doi.org/10.1093/geront/26.3.260
Zarit, S. H. (2006). Assessment of family caregivers: A research perspective. In Family
Caregiver Alliance (Ed.): Caregiver Assessment: Voices and views from the field (Report
from a National Consensus Development Conference, Vol. II, pp. 12-37). San Francisco,
CA: Family Caregiver Alliance.
Zarit, S. H. (2012). Positive aspects of caregiving: more than looking on the bright side, Aging &
Mental Health 16(6),673-674. https://doi.org/10.1080/13607863.2012.692768
Zauszniewski, J. A. (2016). Resourcefulness. Western Journal of Nursing Research, 38(12),
1551-1553. https://doi.org/10.1177/0193945916665079
155
Zhu, C. W., Scarmeas, N., Ornstein, K., Albert, M., Brandt, J., Blacker, D., Sano, M., & Stern,
Y. (2015). Health-care use and cost in dementia caregivers: Longitudinal results from the
Predictors Caregiver Study. Alzheimers Dementia, 11(4),444-454.
https://doi.10.1016/j.jalz.2013.12.018
156
APPENDIX A. THE SEVEN COMPONENT CONSTRUCTS OF SEKHON’S
THEORETICAL FRAMEWORK OF ACCEPTABILITY
1. Affective Attitude: This construct refers to the emotional response or subjective feelings
associated with accepting a particular intervention or behavior. Affective attitude reflects
the individual’s positive or negative emotional response towards the intervention. For
example, if someone perceives a recommended treatment as unpleasant or uncomfortable,
their attitude may be negative, affecting their acceptance.
2. Burden: The burden construct considers the perceived effort, time, or resource investment
required to adopt or engage with the intervention. It reflects how much individuals
perceive the intervention as burdensome or demanding. The higher the perceived burden,
the less likely individuals are to accept the intervention. Factors such as financial costs,
time commitment, or lifestyle changes can influence the perception of burden.
3. Ethicality: Ethicality refers to the perception of the intervention’s moral or ethical
appropriateness. It assesses whether individuals perceive the intervention as aligned with
their moral values or ethical principles. The construct of ethicality acknowledges that
people’s acceptance of an intervention may be influenced by their moral judgments. If
individuals perceive the intervention as ethically sound, they are more likely to accept it.
4. Intervention Coherence: This construct relates to how individuals understand and find the
intervention coherent, logical, or comprehensible. It reflects how well individuals can
grasp the intervention’s purpose, mechanisms, or rationale. Lack of understanding or
confusion about the intervention’s underlying principles may hinder acceptance.
5. Opportunity Costs: Opportunity costs refer to the potential sacrifices or foregone
alternatives associated with a person accepting the intervention. It involves considering
the trade-offs individuals who participate may have to make, such as giving up other
157
activities, resources, or opportunities. If the perceived opportunity costs of accepting an
intervention are high, individuals may be less willing to accept it.
6. Perceived Effectiveness: This construct evaluates an individual’s beliefs about the
expected effectiveness or efficacy of the intervention. It refers to how individuals
perceive the intervention as capable of achieving the desired outcomes. If people perceive
the intervention as highly effective, they are more likely to accept it. On the other hand, if
participants doubt its effectiveness, acceptance may be lower.
7. Self-efficacy: Self-efficacy reflects an individual’s belief in their ability to engage in the
intervention successfully. It assesses a person’s confidence in their skills, knowledge, or
competence to carry out the required tasks or behaviors associated with the intervention.
Higher self-efficacy leads to greater acceptance, as individuals believe they can overcome
challenges and achieve the desired outcomes.
158
APPENDIX B. INTERVIEW GUIDE
• What do you think was the purpose of the CONFIDENCE program?
• What kinds of skills did you learn from participating in the CONFIDENCE program, if
any?
• How did participation in CONFIDENCE affect your ability to seek out help about
financial challenges you may be facing?
• How did participation in CONFIDENCE affect your ability to problem-solve financial
challenges you may be facing?
• How did your participation in CONFIDENCE affect your ability to cope with stress from
the high costs of caregiving?
• Do you believe that you are more confident about how to protect your financial wellbeing as a caregiver? If so, how has this affected your mental health?
• How has your approach to managing your financial well-being changed since attending
CONFIDENCE?
• Please tell us your opinion if the CONFIDENCE program is or is not relevant to the
experiences and needs of Latino family caregivers.
• Which aspects of the CONFIDENCE program did you find most beneficial to you as a
caregiver and why?
• Which aspects of the CONFIDENCE program would you recommend changing and
why?
• Is there anything else you would like to share about the CONFIDENCE program that I
have yet to ask you?
Abstract (if available)
Linked assets
University of Southern California Dissertations and Theses
Conceptually similar
PDF
New directions for family caregiver interventions
PDF
The roles of social isolation and secondary caregiver support in the stress process among primary caregivers of older adults
PDF
Communication and home-based interventions in Alzheimer’s disease -- a review
PDF
Impacts of caregiving on wellbeing among older adults and their spousal caregivers in the United States
PDF
Life course implications of adverse childhood experiences: impacts on elder mistreatment, subjective cognitive decline, and caregivers' health
PDF
The economic security of an aging minority population: a profile of Latino baby boomers to inform future retirees
PDF
The role of public policy in the decisions of parents and caregivers: an examination of work, fertility, and informal caregiving
PDF
Uncovering hidden figures: disparities in dementia burden in an aging America
PDF
The effects of familism and cultural justification on the mental and physical health of family caregivers
PDF
Hidden perspectives: narratives of female family caregiver experiences
PDF
Exploring end-of-life care experiences and disparities among Hispanic populations in the United States
PDF
Thinking generatively versus acting generatively: exploring the associations of generative self-concept and generative activity with cognitive function among older adults
PDF
The role of dyadic and triadic factors on psychosocial wellbeing and healthcare interactions among childhood cancer survivors, parents, and medical providers
PDF
Adoption and implementation of innovative diagnostic tools for Alzheimer's Disease: challenges and barriers in primary care
PDF
You can’t have inclusion without music: utilizing music performance to inform caregiver-selected service outcomes for youth and adults on the Autism spectrum from communities of color
PDF
Neuroimaging markers of risk & resilience to brain aging and dementia
PDF
Integrative care strategies for older adults experiencing co-occurring substance use and mental health disorders (I-CARE)…
PDF
Using mixed methods to identify the characteristics of older fraud victims
PDF
An exploratory study of the role of religion and religious involvement among Latinos with schizophrenia and family caregivers
PDF
Phenotypic and multi-omic characterization of novel C. elegans models of Alzheimer's disease
Asset Metadata
Creator
Mage, Susanna
(author)
Core Title
The dollars and sense of caregiving: exploring the financial financial realities of providing informal care to an older adult
School
Leonard Davis School of Gerontology
Degree
Doctor of Philosophy
Degree Program
Gerontology
Degree Conferral Date
2024-05
Publication Date
07/03/2024
Defense Date
05/08/2024
Publisher
Los Angeles, California
(original),
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
Alzheimer’s disease,caregiving,dementia caregiving,disparities,financial burden,financial interventions,financial strain,financial well-being,Latino caregivers,OAI-PMH Harvest,spousal caregiving
Format
theses
(aat)
Language
English
Contributor
Electronically uploaded by the author
(provenance)
Advisor
Wilber, Kate (
committee chair
), Benton, Donna (
committee member
), Hurlburt, Michael (
committee member
), Meyer, Kylie (
committee member
)
Creator Email
mage@usc.edu
Permanent Link (DOI)
https://doi.org/10.25549/usctheses-oUC113997EU6
Unique identifier
UC113997EU6
Identifier
etd-MageSusann-13178.pdf (filename)
Legacy Identifier
etd-MageSusann-13178
Document Type
Dissertation
Format
theses (aat)
Rights
Mage, Susanna
Internet Media Type
application/pdf
Type
texts
Source
20240709-usctheses-batch-1177
(batch),
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 author, as the original true and official version of the work, but does not grant the reader permission to use the work if the desired use is covered by copyright. It is the author, as rights holder, who must provide use permission if such use is covered by copyright.
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
Repository Email
cisadmin@lib.usc.edu
Tags
Alzheimer’s disease
caregiving
dementia caregiving
disparities
financial burden
financial interventions
financial strain
financial well-being
Latino caregivers
spousal caregiving