Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers

Abstract

Objective:

We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD).

Methods:

Participants were recruited through an agreement with the Rush Alzheimer’s Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants’ perceptions of family caregiving. Direct content analysis was performed.

Results:

Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future.

Conclusions:

The influence of gender roles seemed to play a role in caregivers’ perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving.

Keywords

Caregiving burden Alzheimer's disease and related dementias Latinos

Introduction

Alzheimer's disease and related dementias (ADRD) currently impact at least 5.7 million Americans, and it is projected to increase to 14 million by 2050.¹ In order to provide care for this increasing number of people with ADRD, the number of caregivers is expected to increase. Caregivers experience high levels of stress and depression symptoms,¹ sleeping problems,² less engagement in physical activity,³ and loneliness and social isolation,⁴ putting caregivers at increased risk of detrimental health outcomes. These poorer health outcomes ultimately lead to an increased risk of morbidity and mortality among ADRD caregivers.⁵

Rates of ADRD and family caregiving practices are different among racial/ethnic groups. Latinos have a higher rate of ADRD incidence compared to non-Latino whites,¹ and the prevalence of ADRD in Latinos is at least 50% greater than among non-Latino whites.⁶ This is due in part to higher rates of risk factors, such as obesity, metabolic syndrome, diabetes, and cardiovascular risk.⁷ Additionally, older Latinos diagnosed with dementia live on average 1 year longer with the disease than non-Latino whites,⁸ which prolongs the care period for family caregivers.

Latino family caregivers often lack knowledge and information about ADRD and therefore may seek specialized services later than non-Latino caregivers, if at all.⁹ By receiving assistance later in the process, Latino caregivers have a higher risk of developing depression and behavioral burdens compared to other ethnicities.¹⁰ A meta-analysis showed that Latino caregivers had higher levels of depression and caregiver burden than non-Latino whites.¹¹ Estimates depict that 45% of Latino caregivers experience burden due to their role, in comparison to 33% of non-Latino white caregivers.¹²

Due to socioeconomic, cultural, and systematic reasons, Latinos utilize less formal services such as nursing homes or other types of care.¹³ In the Latino culture, it is frequently frowned upon to seek help outside their family relationships.¹⁴ The role of caregiving is often taken on by family members,¹⁵ creating increasing importance of the family role in the provision of care. This reliance on family caregivers is influenced by legal status, socioeconomic conditions, and cultural preferences.¹⁶ There is a set of cultural values that can influence the provision of informal caregiving among Latino families, including familismo and marianismo.¹⁷ Familismo is characterized by prioritizing family needs over personal needs and the feeling of loyalty and solidarity with family members.¹⁸ The idea of family caregiving is normalized, and it is expected and accepted that a family member assumes the primary caregiving role and supports the care recipient.¹⁹ Marianismo is defined as the traditional Latino view of femininity in which women are assigned self-sacrifice, nurturance, caregiving, and maternal role for family survival.²⁰

Ethnic minority caregivers experience the burden of caring for a dependent older adult differently from non-Latino whites.¹¹ Burden can be accentuated among caregivers from ethnic/racial minority groups because of the disparities suffered in the social and health realms, in addition to the consequences of being a caregiver.²¹ Moreover, previous research proposed a common core of stress and coping for caregivers that understands care recipients’ behavior problems as stressors for family caregivers and consider that caregivers’ appraisal of burden plays a major role in worse mental and physical health outcomes.²² Ultimately, the appraisal and perceptions of burden and its impact on health are mediated by cultural values influencing coping styles strategies and social support. That is, understanding caregiver burden through the lens of different sociocultural aspects is warranted to grasp how caregiving affects health outcomes among Latinos caring for a loved one with ADRD.

Although Knight and Sayegh’s²² sociocultural stress and coping model for caregivers points out burden at the core of the influences on caregiver’s health, the current literature seems to lack an understanding of the general sources that contribute to Latinos’ caregiver burden. The recognition of burden at the core of stress in caregivers and the identification of a scarce literature on sources of burden in Latinos caregivers of people with ADRD lead to the purpose of this study, which is to identify the sources of caregiver burden in middle-aged and older Latino caregivers of a family member with ADRD.

Research Design

Participants

We purposively recruited participants through an agreement with the Rush Alzheimer’s Disease Center (RADC) Clinic Data Repository. An RADC staff member contacted individuals and provided a basic overview of the study. If the potential participant granted verbal consent, the RADC staff member shared their name and contact information with the University of Illinois at Chicago (UIC) research staff. The UIC staff screened 30 potential participants for eligibility via phone or in person. The inclusion criteria consisted of (1) self-reported Latino, (2) at least 50 years old, (3) currently providing care for a family member diagnosed with ADRD, and (4) cared for the family member for at least four hours per day in the last 6 months. The main reason participants were screened out was not providing enough care to be considered the primary caregiver.

Procedures and Data Collection

The study was approved by the institutional review board of UIC protocol number 2014-0821. We followed the consolidated criteria for reporting qualitative studies²³ to report our findings. We conducted interviews in the participant’s preferred language, Spanish or English, at a convenient time and location chosen by the participant. When scheduling the interviews, we provided the caregivers with a broad idea on what topics would be discussed. We also mentioned that personal and sensitive questions would be asked and that they were not obligated to answer questions they would not be comfortable. The primary preferred location was participants’ houses (n = 12), but interviews were also conducted in public spaces and coffee shops (n = 4). Those in public spaces occurred in the quietest place possible. Background noise did not affect our ability to transcribe the interviews.

The interviewers were trained female researcher assistants without a relationship with participants prior to the study. They were bilingual, bicultural, and culturally sensitive to the experiences of the participants. Interviews were conducted in Spanish (n = 8) and English (n = 8) and lasted between 20 and 60 minutes. The semistructured interview guide consisted of questions and probes to capture participant’s perceptions of family caregiving. Questions were designed to gain insights into the experience of Latino caregivers and explored topics of providing care for a loved one, their overall experience as a caregiver, caregiving duties, and how it affects their health (see Online Appendix A). Along with the interview, each participant completed a self-reported demographic questionnaire. Participants were compensated with US$20 for participating in the study.

Data Analysis

The interviews were audio-recorded and transcribed verbatim. Interviewers also took field notes while conducting the interviews. Those notes were included as part of the data collected. Bilingual and bicultural research assistants translated interviews conducted in Spanish into English for consistency in coding. Another research assistant who did not participate in the first round of translation checked the translated versions for accuracy and made corrections according to necessity. The final transcripts were imported into Atlas.ti software version 7.5.16.

A direct content analysis was performed by identifying existing research and key concepts from the literature and analyzing the suitability of prior concepts on the data generated and simultaneously identifying new codes that emerged from the transcripts.²⁴ We utilized the updated Sociocultural Stress and Coping Model²² to guide our direct content analysis (see Figure 1).

Figure 1.

The revised sociocultural stress and coping model for caregivers [adapted from Knight and Sayegh (2010)].²²

Transcripts were analyzed in four phases to ensure credibility and confirmability of the analysis process and resulting interpretations. In phase I, two investigators independently read the transcripts to familiarize themselves with the dynamics of the interviews. As committee, they discussed their insights to identify potential personal biases and drafted the first version of the codebook with the codes that emerged from the data. In phase II, the investigators identified key passages and contents that contrasted or coincided with key content shown in prior literature. Based on the triangulation of contents that emerged from phase I and contents from prior literature, investigators then discussed and agreed upon a set of themes (see Figure 2), its inclusion criteria, and created the second version of the codebook. In phase III, the two investigators used the codebook to code half of the transcripts, compared coding, and created the third version of the codebook with further details on inclusion and exclusion criteria of themes. In phase IV, all interviews were coded, the final transcript coding was compared between investigators, and a negotiated agreement was achieved. At this approach for assessing intercoder reliability, the two coders compared their coding and discussed disagreements in an effort to reconcile them and generate a final version in which we resolved the discrepancies.²⁵ The principal investigator (D.X.M.) was consulted if an agreement was not achieved at each abovementioned step. The themes were inserted into Atlas.ti, and the transcripts were coded within the themes characterized by the third version of the codebook. Data from the interviewees and themes generated were not confirmed by participants.

Figure 2.

Relationship between sociocultural stress and coping model for caregivers (adapted from Knight and Sayegh (2010)²² and sources of burden identified in the data analysis.

Results

Participants were middle-aged and older adults aged 50 to 75 years old (M = 60.0, standard deviation [SD] = 8.5). Most of the participants were female (n = 12), married (n = 10), and a majority were foreign-born (n = 11). Male caregivers were caring for their wife (n = 3), of which one was an early-onset ADRD care recipient and father (n = 1). Female caregivers were caring for their mother (n = 6), husband (n = 4), father (n = 1), and both parents (n = 1). See Table 1 for more detailed information.

Table 1.

Demographic Characteristics of Middle-Aged and Older Latinos Caregivers of a Family Member With ADRD.

Characteristics	M (SD)
Age	60.0 (8.5)
Years of school	12.2 (3.6)
	N (%)
Sex
Male	4 (25%)
Female	12 (75%)
Country of origin
United States	5 (31.3%)
Mexico	6 (37.5%)
Puerto Rico	3 (18.8%)
Others	2 (12.6%)
Annual household income
<US$40 000	9 (56.2%)
>US$40 001	3 (18.8%)
Declined	4 (25.0%)
Care recipient
Mother	6 (37.50%)
Husband	4 (25.00%)
Wife	3 (18.75%)
Father	2 (12.50%)
Both parents	1 (6.25%)

Abbreviations: ADRD, Alzheimer disease and related dementia; SD, standard deviation.

After analyzing the interviews, we identified 6 main sources of burden. The sources are presented from the most prominent to the least: (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (f) concerns about the future.

Caregiver Responsibilities

Caregiver responsibilities were described as daily obligations related to the care recipient and were the most cited source of burden. Some of these duties comprised activities of daily living. Caregivers also stated that they had to provide companionship and be attentive for fall prevention, and also were in charge of the care recipient’s medicine routine. Caregivers were also responsible for scheduling and accompanying the care recipient to physician’s visits, ensuring the care recipient stayed active throughout the day, and were well rested. Caregiver 12 (female, 50, caring for father, Mexican, 42 years in the United States, Spanish preferred language) remarked, “I have to change him, give him his medicine, turn him over, well everything is done to him.” An activity that can be considered part of Latino cultural identity is related to homemade food and cooking from scratch. Caregiver 16 (female, 57, caring for mother, American, English preferred language) said, “I cook for her. She has a strict diet. That’s why she’s so healthy.” Caregiver 2 (male, 51, caring for father, American, English preferred language) mentioned he is not able to use services that provide food as his father has a preference for traditional Mexican food: “the home delivered meals, that’s something like…hum, I don’t know what kind of meals they are but he’s the type that if it’s not Mexican food he won’t eat it.” Related to activities of daily life, caregiver 17 (female, 52, caring for father, Mexican, 38 years in the United States, Spanish preferred language) mentioned,

What I do now is, firstly, be mindful of her medications, see which ones she needs, take her to the doctor, feed her, make sure she’s sleeping well, prepare her clothes—what she’s going to wear—help her to get dressed, help her to get into her chair, take her to the bathroom, clean her, right?

Although daily responsibilities were considered stressful, some caregivers also perceived it as a blessing to care for their loved one and especially make them feel included. Caregiver 14 (female, 51, caring for mother, Mexican, 42 years in the United States, Spanish preferred language) said,

Trying to get her into activities such as playing games, doing puzzles, doing the dishes, anything simple…trying to let them know that they are still needed…just to trying to get them up and let them know that they are still important in your life.

Caregiving-Related Health Decline

Caregiving was stated as a duty that requires a lot of physical work, such as helping the person get up from the bed, dressing and bathing them, and making sure they could transfer from different surfaces properly. These activities were mentioned as possible causes of joint and back pain by caregivers. Some caregivers mentioned they were using medication to ease their pain in order to perform their tasks. Also, caregivers were affected mentally and emotionally as they developed stress, anxiety, and depression, and the use of medication for these was mentioned. Caregivers reported they often spent less time on things they enjoyed doing and had less social interaction because of the time required for the caregiving role. Also, witnessing their loved ones go through a progressive disease was emotionally harmful to caregivers. Therefore, the caregivers’ health declined in many aspects through the caregiving process. Caregiver 2 (male, 51, caring for father, American, English preferred language) stated,

You know, my back, it’s just hurting, I’m just really miserable because of my back pain and I know I won’t be able to attend to him, you know like he would have done for me. I won’t be able to help him out.

Caregiver 13 (female, 59, caring for mother, American, English preferred language) mentioned higher levels of emotional distress:

I’ve gotten on anti-anxiety pills because it [caregiving] stresses me out. It stresses me out so bad that I just don’t know which way to turn anymore.

Another caregiver (caregiver 8, female, 75, caring for husband, Mexican, 42 years in the United States, Spanish preferred language) highlighted she was not able to take part of activities she used to do before becoming a caregiver, “before I had many outdoor activities in the park, there were a lot of activities. And now, I don’t have any of that. Now I am just here.”

Lack of Support

Caregivers felt they were often neglected by friends and family during the time that they needed them the most. Many caregivers lacked support from loved ones and were always looking for help with the caregiving role. Caregivers often lacked support because their families did not have the time to help or lived far away. Caregivers mentioned they could not get simple chores done around the house because of their caregiving obligations. Caregivers often sought help for cleaning but also mentioned desiring more assistance to relieve some stress. For instance, caregiver 2 (male, 51, caring for father, American, English preferred language) stated:

It’s hard because now that the kids left home, no one’s home now, it’s hard to have somebody there to say ‘oh, we’ll take care of dad, don’t worry about it,’ ‘we got it,’ you know, my son and my daughter will say ‘somebody will be here dad, don’t worry, go ahead, go.’ But now nobody’s home; they have their own families, you know, now it’s hard to find somebody.

A potential factor that seemed to influence the perception of lack of support was a strong distinction on obligations and activities based on gender. Caregiver 14 (female, 51, caring for mother, Mexican, 42 years in the United States, Spanish preferred language) mentioned:

In my family, my dad deceased from cancer, so, the boys are like, ‘we did the job, now this is mom, and it’s your job.’ And I go ‘wait a minute, no, it should be equal.’ They go ‘Oh no, no…She’s a woman; she’s a female, we can’t…We’ll provide enough.’ Sometimes they come up and say ‘Well, we can help you financially. If you need to get someone else, we could help you financially but don’t ask us to get mom in the shower, don’t ask us to help our mom bathe, that’s something you should be doing.’

The influence of gender roles was also highlighted by the caregiver 17 (female, 52, caring for mother, Mexican, 38 years in the United States, Spanish preferred language):

I have a brother that is afraid of not being able to take care of my mom or of having to take care of my mother. But I don’t say that because he doesn’t want to do it but rather because every time he feels like, ‘What am I going to do when she has to go to the bathroom or when I have to clean her?’ Or something like that, right? ‘Or her, how will she feel?’

Financial Status

Caregivers were worried about their economic status, as most reported a low or medium income. Caregivers mentioned being responsible for paying hospital bills, utilities, medication, and groceries. Some caregivers did not have sufficient funds to care for the loved one. Therefore, they had to budget their money wisely and ask for financial assistance. This financial burden exacerbated the stress experienced in the caregiving role. Caregiver 13 (female, 59, caring for mother, American, English preferred language) stated,

Oh God it’s, it’s gotten a little harder now…just because you know I was working before and I got hurt on the job, so I’m not working, so financially that’s a big burden on me.

Nevertheless, even with the financial status being complicated, the need to keep providing the best care to the loved one was still a priority, which is illustrated by caregiver 6 (female, 70, caring for mother, Honduran, 20 years in the United States, Spanish preferred language):

When you love someone you do not care about your economic situation, you just keep going on. Because we are not in the most ideal financial situation, it has been difficult and tight.

Vigilance

Caregivers mentioned that they had to be on constant alert to prevent their loved ones from getting injured. They need to be alert to prevent care recipients’ falls or burns. In addition, when caregivers were not with their care recipient, fear for their safety was constant. Caregiver 15 (female, 59, caring for father, Guatemalan, 35 years in the United States, Spanish preferred language) and 4 (female, 70, caring for both parents, American, English preferred language), respectively, stated,

Well, before when he became to get sick he could do more. But now I watch him more because he already needs help with almost everything, to walk. He walks with a walker, but I go and stop him. I help him do that. I help him eat, bathe.

I’ve gone home sometimes, and I told my daughters ‘I’m not going back, I can’t do this no more, I just can’t.’ It’s very stressful because you worry constantly, I do, constantly. ‘Are they going to be okay? Are they going to be alright? How’s everything?’ It’s like you’re just waiting for something to happen.

Another factor that made caregiving even more difficult and demanded increased vigilance was the cold weather in the Midwestern United States. During the winter, more caution and stress was experienced by caregivers due to increased risk of falling on the ice and more time spent at home. Caregiver 13 (female, 59, caring for mother, American, English preferred language) said,

Because it’s cold out there, it’s slippery. I don’t need her to fall. If I’m gonna go make payments and she wants to go with me, it takes me at least ten minutes to get her in the car, just alone. So you know it’s like a burden to me.

Concerns About the Future

This theme was related to worries and stress caused by the insecurity of what the future holds. Caregivers had concerns about the health of the loved one, their health, and financial situation because of not knowing what to do if health or financial status started to fail. They often dealt with problems one day at a time because they could never predict what was going to happen with the care recipient the next day. Some caregivers mentioned that they had created a plan for caregiving according to disease progression and also a plan if familial caregiving became impracticable. However, many struggled with placing them in a nursing home or having someone else fulfill their role as the caregiver. Caregiver 15 (female, 59, caring for father, Guatemalan, 35 years in the United States, Spanish preferred language) said,

With my disability, I won’t be able to take care of him, I know I won’t. I mean, having to carry him, I can’t do that. I would have to find a home for him. It would hurt me so much. I mean, it did really hurt me because it seems like I failed with him.

When asked about the possibility of placing the family member in a nursing home, caregiver 4 (female, 66, caring for both parents, American, English preferred language) said,

I don’t know, I would have to take care of her. I couldn’t do it. That would be hard. Because they’re so used to their house. I think once they leave their house it’s going to be down from there […] cuz they got their house they’re at least in charge, and they got something. And that keeps them going […] Especially coming from a Mexican family, you know. We take care of our own, and that’s the way it goes.

Similarly, caregiver 11 (female, 50, caring for husband, Puerto Rican, 31 years in the United States, Spanish preferred language) remarked,

It’s not the same having him here at home versus having him at a center or a nursing home. They don’t offer the same kindness that is offered here at home.

Discussion

The current study found that Latino caregivers of a family member with ADRD experience burden due to an overload of caregiver responsibilities, caregiver’s health, lack of support, financial status, vigilance, and concerns about the future. Those sources of burden were directly related to caregiving. Caregivers were affected by physical, emotional, and financial burdens, as they were often required to care for a loved one with ADRD without sufficient support. We believe that some of the sources of burden identified can potentially be explained by Latino cultural values commonly present in Latinos.

Findings indicate that the caregiver’s responsibilities revolved around the needs of the loved one with ADRD, such as managing medicine routine, bathing/showering, putting them to sleep, dressing, cooking, feeding, scheduling and attending doctor visits, and making companionship, among others. Previous research with Latina caregivers of older adults with nonspecific diseases has reported the large number of daily activities that caregivers are responsible for, mostly activities of daily living.²⁶ These activities were noted as emotionally draining by English- and Spanish-speaking Latina caregivers.²⁷ Many of the caregiver responsibilities described as sources of burden are exacerbated by Latino cultural values. Cooking from scratch and preparing homemade meals is more prevalent among Latino households²⁸ and is part of Latino cultural identity,²⁹ and those expectations and obligations likely influence caregivers’ perception of burden. Also, providing companionship is an essential role of being a caregiver for Latino caregivers^27,30 and can be tied to the familismo cultural value and its expectations of demonstrating loyalty and solidarity with family members.¹⁸ Furthermore, it is possible that marianismo expectations over female caregivers of their nurturing role, self-sacrificing for the family and complete devotion to family,¹⁸ can play a role on activities of daily life and instrumental activities of daily life being a source of burden. Those roles can be exacerbated in middle-aged and in older Latinas who provide care for other family members other than the loved one with ADRD.

Beyond cultural values, middle-aged Latinos experience the “sandwich generation” in which they provide care for their children and/or grandchildren and their aging parents.³¹ Providing care for both children and older adults places more responsibilities and time commitments on caregivers. Reports indicate that 45% of Latino caregivers spend on average 32 hours per week taking care of an older adult or family member compared to 33% of non-Latino whites who spend 20 hours per week.¹²

An extra source of burden is related to caregivers’ health status. Caregivers reported their physical and mental health declined as a result of caregiving. In a seminal study on the impact of caregiving on caregivers’ health, Schulz and Beach found that caregivers who experience strains had mortality risks that were 63% higher than noncaregivers, and being a caregiver experiencing mental or emotional strain is an independent risk factor for mortality.³² A systematic review on psychological health in spousal caregivers corroborates the present study, showing that caregivers experienced more cognitive functioning difficulties, strain, distress, stress, loneliness, depression, anxiety, and poorer mental health than noncaregivers.⁴ Caregiver burden was recognized as the strongest predictor of caregiver’s self-reported health status among Iranian informal caregivers of older adults with dementia.³³ Specifically among Latinos, counselors expressed concerns about caregivers’ health declines in a study exploring the use and awareness of self-management principles and skills to address health among family caregiver of persons with dementia.³⁴ Additionally, caregivers expressed frustration about not having support or resources to respond adequately to care recipients’ needs, which can potentially result in increased stress and health decline.

Our results showed that Latino caregivers claimed the need for more support from their family and friends on their caregiving daily activities. Caregiving involves multiple obligations, which are likely to be overwhelming when carried out on a daily basis by a single person. Caregivers reported receiving insufficient support from friends and family, placing pressure on themselves to perform all the responsibilities. Not having the social support needs met lead to unmet health needs³⁵ and is associated with higher levels of caregiver depression and strain.³⁶ Also, it is associated with higher distress and lower perceptions about family members’ actual participation.³⁷

Although Latinos are known to demonstrate the prominent cultural value of familismo, we observed that caregivers lacked support and desired family members to be more involved with caregiving responsibilities and dealing with stress. The desire for more social support was found in other previous studies with Latinos caregivers.^38
-40 Lack of family support may be due to changing family dynamics, such as more women entering the workforce and smaller family size, resulting in families with less time and fewer people to rely on. Another reason may be due to the sense of obligation to take care of the elderly individuals not being passed on to younger generations. Further studies should investigate the role of familismo for younger generations, and how it affects the social support network for caregivers since acculturation and more time spent in the United States is linked to lower levels of familismo.⁴¹

When caregivers have support from other family members, better coping with responsibilities is observed, reducing the experienced burden.⁴² Social support from family members who engage in multiple caregiving roles might promote mutual understanding among family through shared experiences.³⁷ Nonetheless, the perception of lack of support from friends and family can be due to their unawareness of the burden caregivers’ experience.³⁵ It can also be hypothesized that caregivers do not share the negative feelings that come with acknowledgment of burden and the need of more support because it would be culturally unacceptable.⁴³

Another potential factor influencing caregivers’ perception of lack of support is related to gender roles. This is evident especially with instrumental support to carry out caregiving obligations. Cultural values tied to gender role expectations potentially explain this relationship. As mentioned before, marianismo has expectations of female caregivers having the nurturing role, self-sacrificing for the family and having complete devotion to family.¹⁸ This helps partially explain the inequality of gender roles highlighted by some caregivers. The expectation and assignment of caregiving duties fall to female family members and can even be forced upon women.¹⁸ Meanwhile, males are expected to have a protector and provider role as characteristics of machismo.⁴⁴ Those difference in expectations could explain the perception of lack of support, especially instrumental support coming from male family members.

Financial concerns were also cited as a source leading to strains. This can be explained by the fact that more than half of the participants reported an annual household income below US$40 000. Similarly, income and the pressure of responsibility were sources of burden in a study on ADRD family caregivers from Cyprus.⁴⁵ In the United States, the average costs of caregiving are about US$43 539 per year, which is usually paid out of pocket, and often the caregivers are unpaid for their caregiving services.¹ The discrepancy between caregiver’s income and projected costs of caring for someone with ADRD make clear the financial struggles that many caregivers face. Furthermore, Latinos experience severe retirement insecurity, stemming from a lack of retirement savings. Thus, caregivers are unable to rely on their recipient’s retirement savings.⁴⁶ Additionally, the National Hispanic Council on Aging found that caregivers who spend most of their time performing unpaid caregiving have a higher chance of experiencing financial strain and emotional stress.⁴⁷

For people diagnosed with ADRD, their future becomes unpredictable as the disease worsens and the expenses increase. When this occurs, caregivers should plan for the future to continue caregiving for their loved one. However, Latinos are less likely to use assisted living facilities or nursing homes.⁴⁸ Factors such as lack of insurance and lack of income to pay for the services are among the motives for the decision of not placing family members in nursing homes.⁴⁹ In the United States, the median cost of assisted living facilities was shown to be US$3750 per month, or US$45 000 per year, while the average cost for a private room in a nursing home was US$97 455 per year and for a semiprivate room was US$85 775 per year.⁵⁰ In addition to assisted living facilities and nursing home being financially burdensome, some caregivers reported that not being an option because taking care of family members and be close to the care recipient offering emotional support is part of their cultural identity. Familismo seems to play a pivotal role on the decision of not using nursing homes, in consonance with the characteristics of strong identification and attachment with their families and strong feelings of loyalty and solidarity.¹⁸ Similarly, Latino caregivers had described caregiving as a “self-sacrificing duty” due to their sense of obligation to ensure care recipients’ health and safety.³⁴

The weather was found to be an extra source of burden. Weather’s influence is partially due to the characteristic of the region where the caregivers were recruited (Chicago, Illinois), as it has cold winters. Our results demonstrated that colder weather might be a source of burden, as the care recipients often refused to go outside. Skinner et al also found the effects of weather on caregiving for children and older adults. It was found the winter season negatively affected caregiving provisions, and weather as an underestimated factor can affect caregiving.⁵¹ Therefore, external environmental factors also play a role in the process of caregiving and may add to the burden that the caregivers experience.

Despite the strengths of this study of capturing experiences from a sample of Latinos with different socioeconomic backgrounds, educational attainment, and English- and Spanish-speaking, some limitations should be addressed. First, the results should be interpreted acknowledging the potential loss of content on interviews due to the translation process, specifically with words or expressions with no direct translation to English. Second, the participants were part of the RADC Clinic Data Repository, meaning the caregivers had already reached out for services to help them during the caregiving process. Thus, these caregivers might not be representative of all ADRD caregivers. Third, the study did not take into account the stage of ADRD. Participants were caring for loved ones in the range of early ADRD to more advanced stages, and one case with early onset. This plays a role in some distinct caregiver responsibilities. Also, the data analysis did not focus on differences in the perception of sources of burden between spouse and adult children caregivers, gender, language, and other demographic differences, which should be considered in future studies. Finally, this study did not account for additional comorbidities other than ADRD.

Conclusion

We identified six main sources of caregiving burden among middle-aged and older Latino caregivers of a loved one with ADRD. Daily obligations related to the care recipient were the most cited source of burden. Those obligations involved a load of physical work that led caregivers to experience poor health. Other sources of burden were related to lack of support, constant concern about financial status, and continuous vigilance. Latino cultural values likely reinforced gender disparities in family caregiving. This study can inform future research to take into consideration the different sources of burden when designing interventions for Latino caregivers. Future studies should include interventions aiming to target different sources of burden, how it affects caregivers’ health and quality of care, and consider the existence of differences between spouse and adult children caregivers. Cultural values should always be taken into consideration when designing programs or interventions with Latino family caregivers. Our results can also be used by clinicians to inform Latino caregivers of the importance of reaching out to family members, friends, formal care, and specialized organizations for support before the responsibilities become too burdensome.

Supplemental Material

Supplemental Material, Appendix_Interview_Guide - Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers

Supplemental Material, Appendix_Interview_Guide for Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers by Guilherme Moraes Balbim, Melissa Magallanes, Isabela Gouveia Marques, Karen Ciruelas, Susan Aguiñaga, Jacqueline Guzman and David Xavier Marquez in Journal of Geriatric Psychiatry and Neurology

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research: The authors received financial support from the Department of Kinesiology and Nutrition (University of Illinois at Chicago) for the research, authorship, and/or publication of this article.

ORCID iD

Guilherme Moraes Balbim

Supplemental Material

Supplemental material for this article is available online.

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