“I Lay Awake at Night”: Latino Family Caregivers’ Experiences Covering Out-of-Pocket Costs When Caring for Someone Living With Dementia

Abstract

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. Although 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 11 qualitative interviews with 14 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 3 themes: daily needs and costs, psychological distress caused by financial issues, and stressful barriers to accessing family and societal support. Furthermore, 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 a 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 develop culturally relevant interventions to help Latino families to lower caregiving costs. This is especially important as the number of Latinos living with dementia is expected to increase over the next 4 decades and effective interventions are lacking.

The physical, emotional, and social costs of caregiving for a person living with dementia are well documented in an extensive and growing literature (Pinquart & Sorensen, 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 to 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 $6,663 per year. Many expenses assumed by family caregivers (e.g., home modifications, medications, and durable medical equipment) are not covered by Medicare or other insurance (Rainville et al., 2016). It has been estimated that in the last 5 years of life, persons living with dementia 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 and the Alzheimer’s Association (2017), two thirds of caregivers to 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, such as 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).

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 that are critical for economic security in later life, such as social security (MetLife Mature Market Institute, 2011). Furthermore, reentering 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 persons 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 & Sorensen, 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 coronavirus disease 2019 (COVID-19) pandemic exacerbated the financial strain experienced by family caregivers, leading to wider disparities between caregivers and noncaregivers (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-of-pocket costs of care for Latino caregivers have received little research attention and are not well understood. One explanation, the cultural value familialism (Mendez-Luck & Anthony, 2016; Scharlach et al., 2006), which 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-pockets 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, because 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 with non-Latino caregivers (AARP Public Policy Institute & National Alliance for Caregiving, 2020). To provide the high-intensity care that persons living with dementia require, Latino caregivers spend $1,849 more on household items (e.g., home modifications) and $1,849 more 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., 2022).

The Current Study

Few interventions exist to help caregivers manage financial hardship, let alone programs which are tailored to the needs of Latino families. Most caregiver interventions focus on stress management and the 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, though this study did not focus on family caregivers to persons living with dementia (Patel et al., 2021).

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 among 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: to better understand, first, why this group spends more money proportionate to their income on care-related costs than the average 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 the Latino caregivers population because (a) they spend a higher proportion of their income on caregiving expenses relative to non-Latino caregivers, and (b) given a projected eightfold growth in the number of Latinos living with dementia in the United States 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.

Method

Study Design

To better understand caregivers’ financial well-being while caring for a family member living with dementia, we conducted one-time, semistructured, in-depth qualitative interviews with Latino caregivers. 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 a conceptual model of financial hardship (Tucker-Seeley & Thorpe, 2019), further described subsequently.

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 multifaceted 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, and lastly, behavioral hardship includes making financial adjustments, delaying one’s own health care, and altering spending/consumption patterns. The components of financial hardship are multidirectional, and concepts across all three may affect one’s responses in managing their finances.

The research team reviewed the interview guide with the community advisory council over two, 1.5-hr meetings. An abbreviated version of the interview guide is shown in Figure 1.

Figure 1.

Abbreviated interview guide.

Eligibility

Eligibility criteria were Latino/Latina/Latinx ethnicity, English- or Spanish-speaking, currently providing unpaid care to a person living with dementia for at least 4 hr/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 14 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 2). For context, the service environment 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.

Table 2.

Participant Demographics^a

Participant	State	Age (years)	Gender	Hours of care/week	Language	Relationship to care receiver	Years caregiving	Employment status	Education
1	Texas	47	Female	144	English	Child	1–2	Unemployed	Postgraduate
2a	California	58	Female	90	English	Child	2–5	Unemployed	Some college
2b	California	—	Male	—	English	Spouse	2–5	—	—
3	Texas	60	Female	8	English	Child	<1	Retired	Postgraduate
4a	Texas	58	Female	20	English	Child	2–5	Full-time	College graduate
4b	Texas	—	Male	168	English	Spouse	5+	Retired	High school
5a	Texas	63	Female	168	English	Daughter-in-law	2–5	Retired	College graduate
5b	Texas	—	Male	20	English	Not applicable	2–5	Unemployed	—
6	Texas	65	Female	168	English	Spouse	5+	—	—
7	California	60	Female	168	Spanish	Child	5+	Part-time	College graduate
8	California	71	Female	70	English	Spouse	5+	Retired	College graduate
9	California	60	Female	168	English	Child	5+	Unemployed	College graduate
10	California	51	Female	70	English	Child	5+	Unemployed	Some college
11	California	65	Male	72	Spanish	Spouse	1–2	Unemployed	College graduate

^aIf two caregivers were included, then a and b are used to show the dyad.

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 completing the interview. Most interviews were approximately 60 min in length, with a range of 60–90 min. Participants received a $15 gift card for their participation. A bilingual member of the research team, who was also a Latino caregiver, conducted the interviews. With participant permission, interviews were recorded and then transcribed. The interview guide was translated into Spanish prior to conducting Spanish interviews, and afterward, the audio transcript was translated into English. Each transcript was reviewed prior to analysis to ensure accuracy.

Interviews were held until no new themes or codes emerged, reaching 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 and Clarke (2006), guided by the three categories in the model of financial hardship (Tucker-Seeley & Thorpe, 2019). Given the overlap between domains, 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.

As initial coding exposed how culture affected caregivers’ experiences with out-of-pocket 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 recoded 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 version of the codebook is shown in Table 1.

Table 1.

CONFIDENCE Interviews Codebook

Code	Definition
Material cost examples
Food	Caregiver pays for food, for example, 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 responses 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 a 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; whereas 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)

Note: COVID-19 = coronoavirus 2019

Findings

Sample

A total of 11 interviews were conducted with 14 caregivers as 3 primary caregivers chose to complete their interview with a family member. The average age of the caregivers was 60 years, and the majority of participants (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. Of the participants, only two caregivers were employed, with the rest being either unemployed or retired. Additional participant characteristics are shown in Table 2.

Types of Out-of-Pocket Costs

Study participants described a wide range of caregiving expenses paid for out of pocket. Common health care costs included medical equipment (e.g., wheelchairs), copays 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 and 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. One category of expenses we did not anticipate was interest fees from credit card and loan debt used to cover caregiving expenses and manage lost income due to caregiving. Nearly half of the caregivers noted spending out-of-pocket for home care, although this cost was commonly the first to be cut, as other care costs could not be curtailed.

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–psychosocial–behavioral 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., copays, vitamins, and 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 check’” (Participant 3). These quotes reveal caregivers’ discomfort in 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 and food). Whereas sharing household resources and costs were normal for spousal care partners, 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, including 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)

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 the opportunity costs of trading-off paid employment for unpaid caregiving, and the subsequent difficulty of reentering 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 Effect of Caregiving Costs

The second theme, which relates primarily to the psychosocial costs of the material–psychosocial–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.

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 earlier 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).

The anxiety produced by the unknown costs of caregiving was most acutely felt around the topic of long-term care expenses. Although 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.

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 the described expectations she initially placed on 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 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 was 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. Contrary to input from the advisory council, 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).

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: the family could not be relied upon to help cover care costs

Many caregivers also expressed frustration with the 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)

Discussion

The purpose of this study was to better understand Latino family caregivers’ experiences managing out-of-pocket costs for persons living with dementia in the United States. Findings showed that Latino caregivers compromise their own financial well-being to provide care. Although this finding likely also applies to many non-Latino caregivers in the United States, it is particularly relevant among Latinos 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 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, because 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 multifaceted and overlapping (Tucker-Seeley & Thorpe, 2019). For example, caregivers described how the many day-to-day caregiving expenses not covered by health insurance added up over time. 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 shows several of the main financial hardship caregivers described, broken into their material, psychosocial, and behavioral components.

Table 3.

Application of Material–Psychological–Behavioral Model to Latino Dementia Caregivers’ Out-of-Pocket Costs

Financial hardship type	Material		Psychological		Behavioral
	Description	Example quote	Description	Example quote	Description	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. Although 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.”
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 when trying to access community resources that might otherwise displace out-of-pocket costs, including (a) not knowing where to find resources and (b) barriers such as limited eligibility criteria.	“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.”	Caregivers expressed frustration with accessing community resources, as well as disappointment with eligibility requirements to “spend down” the care recipient’s resources to access Medicaid.	“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.”	When frustrated by their experiences, 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.	“Why should I invest my energy in 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.”

Notably, cultural norms about providing care and caregivers’ internal sense of responsibility contributed to their shouldering additional financial costs of care. As 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 supports and services systems, where families assume more costs when they assume a direct care role in the community, may exploit Latino families’ preference to provide care in the community. Consequently, formal long-term supports and services may be inequitably distributed between Latino and non-Latino caregivers.

Despite common conceptions that the cultural value of familiasmo 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. 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 United States 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.

Financial decisions are also personal decisions; interventions must acknowledge the role of caregivers’ preferences and cultural values that affect 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.

Last, 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 levels, our results reinforce previous findings suggesting long-term care payment systems in the United States 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 were not covered by health insurers. Although eligibility for Medicaid and other services was not known 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 the experiences of caregivers who accessed services and creating a possible selection bias. Still, by selecting caregivers from California and Texas, we were able to include caregivers from multiple policy contexts within the United States. Furthermore, 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 and 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 Latinos 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 preference by Latino families to keep a care recipient in the home may be met with a financial disadvantage due to the high out-of-pocket costs of care. Interventions at the individual and policy levels must consider these cultural norms to ensure more equitable financial outcomes for Latino families.

Funding

This work was supported by AARP Foundation (INC-2020-07-002), the University of Southern California Center for Changing Families, the National Center for Advancing Translational Sciences, National Institutes of Health (TL1 TR002647), and the National Institute on Aging, National Institutes of Health (P30AG066546-6187). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Conflict of Interest

None declared.

Institutional Review Board Approval

The study was approved by the University of Southern California Institutional Review Board and determined to be Exempt (Protocol # UP-21-00260).

Data Availability

Original data are not available for secondary analysis to protect participant identities. The study was not preregistered.