Abstract
Despite the long-held view that Latinos’ value and reliance on family leads to greater involvement of extended family in caring for sick members and reduced perception of burden, some research reports low levels of social support and high levels of distress among Latino caregivers. We explore this seeming discrepancy in a qualitative study of 41 Latino caregivers of family members with Alzheimer’s disease, interviewing them regarding the role of familism in their caregiving experience. For some it facilitates caregiving in the traditional, expected manner. Other caregivers disavow its current relevance. Yet others feel a contrast between familism, which they may value in a general, abstract way and more personal, immediate negative feelings they are experiencing from caregiving. We discuss these complex, multidimensional findings, the variation among caregivers, and present implications for practice, policy, and research.
It is an oft-repeated tenet in the literature that Latinos’ 1 value of familismo, “a strong identification and attachment of individuals with their families (nuclear and extended), and strong feelings of loyalty, reciprocity and solidarity among members of the same family” (Sabogal et al., 1987), leads to greater actual involvement of extended family in the care of sick members and reduced perception of caregiving burden, since providing care is expected, valued, and culturally syntonic (see, e.g., John, Resendiz, & De Vargas, 1997). Value orientations subsumed by familismo include the expectation of being able to rely on family members for support, a mutual sense of obligation to care for family in need, and the use of relatives as referents to provide guidance as to how life should be lived (Knight & Sayegh, 2010; Sabogal et al., 1987).
Latino Older Adults and Their Family Caregivers
The latest U.S. Census found 50.5 million Latinos in the United States, accounting for 16.3% of the entire population, and making it the largest ethnic or racial minority in the country. The Latino population in the United States is the fastest-growing minority group, increasing by 43% since 2000. By 2050, Latinos are projected to account for 30% of the population, outnumbering the nation’s total of African Americans, Asian Americans, and American Indians combined (U.S. Census Bureau, 2010). Latinos also constitute the fastest growing subpopulation among the aged in the United States, from just under 3 million in 2008 to a projected 17.5 million in 2050, when they are expected to comprise 20% of all older adults (Federal Interagency Forum on Aging [FIFA], 2010, p. 4).
Reviews of the substantial literature on the effects of caregiving have found that caregivers experience serious mental and physical health effects from the chronic stress of providing care for aging relatives, including increased rates of depression and other psychological distress, family conflict, poorer self-rated health, alterations in immune functioning, and even increased mortality (see, e.g., Ory, Yee, Tennstedt, & Shulz, 2000; Marks, Lambert, Jun & Song, 2008; Pinquart & Sörensen, 2003).
Latino caregivers of older adults face special challenges for a variety of reasons (Aranda & Knight, 1997). First, Latino older adults tend to have significant social service needs, greater than those of other aging groups. For example, in 2007, 20% of older Latinas and 13% of older Latinos were poor, compared to 12% and 5% of older non-Hispanic White women and men, respectively (FIFA, 2010). A comparison between a national sample of non-Hispanic and Hispanic elders found that the latter fared worse on almost every measure of health and well-being, including self-reported health, satisfaction, and functional status (Andrews, Lyons, & Rowland, 1992). Several studies comparing the functional status of elderly Latinos and Whites have found that Latinos are significantly more disabled (Jette, Crawford, & Tennstedt, 1996; Tennstedt, Chang, & Delgado, 1998).
A second challenge is that Latinos tend to underutilize formal services when compared to other groups (Burnette, 1999; Tennstedt, Chang, & Delgado, 1998) for complex socioeconomic, cultural, and structural reasons. For example, personal beliefs such as fear of being discriminated against, language barriers, transportation difficulties, economic limitations, and lack of family support in accessing services have been found to be barriers to care for elderly Hispanics with cognitive and memory problems (Ortíz & Fitten, 2000). Lack of knowledge regarding existing resources appears to be another significant reason for the underuse of formal services by Latino elders (Burnette, 1999).
The underutilization of formal services among Latino older adults means greater dependence on informal supports, especially family caregivers (Angel, Angel, & Himes, 1992). Latino older adults have been found more likely to live with family and less likely to live alone or in institutional settings than Whites, regardless of health status (Angel, Angel, Aranda, & Miles, 2004).
Even as Latino older adults as a group present with special vulnerabilities, studies have found that their family caregivers are more likely to be younger and also caring for children under 18, in addition to being poorer, less educated, underemployed and in worse mental and physical health than their White counterparts (National Alliance for Caregiving/American Association of Retired Persons, 1997).
Thus, because of the significant numbers of Latino older adults, their reliance on family caregivers, and the complex challenges they and their caregivers face, it is important to understand the role that cultural values such as familismo play in Latinos’ experience of caregiving.
What Is the Role of Familism in Caregiving? A Literature Review
Some studies have reported lower appraisals of stress and greater perceived benefits of caregiving by Latinos (Coon et al., 2004; Depp et al., 2005), and delays of institutionalization of dementia patients by Latinas, attributed to the cultural value of familism and the more positive views of caregiving it engenders (Mausbach et al., 2004). On the other hand, several contrasting studies point to high levels of depression and low levels of social support among Latino caregivers, at odds with the presumed protection that familismo would be expected to confer (Cox & Monk 1990, 1993, 1996; Harwood et al., 1998). For example, Polich and Gallagher-Thompson (1997) found high levels of self-reported depression among their sample of Latina caregivers, best predicted by dissatisfaction with family support and perceived negative impact of caregiving on physical health. A study comparing Anglo-American, African American, Japanese American, and Mexican American spousal caregivers of persons with dementia found that the Mexican Americans reported significantly higher rates of depression than any of the other groups. In addition, they reported a lack of social support and viewed their situation pessimistically (Adams, Aranda, Kemp, & Takagi, 2002). Cox and Monk (1993) reported that their sample of Latino caregivers—predominantly Puerto Ricans living in New York and Baltimore—were receiving minimal support from the extended family. These participants had high scores on a self-report measure of depression. John and McMillan (1998) also found lack of family assistance with caregiving in their sample of Mexican American caregivers. Valle, Yamada, and Barrio (2004) report that Latino caregivers of relatives with dementia, compared to their Euro-American counterparts, had smaller social support networks, engaged in less help-seeking, and reported higher distress. Rosenthal Gelman (2010), in a qualitative study of Latino family caregivers of persons with Alzheimer’s disease (AD), found that participants reported a discrepancy between the ideal of familism and their actual experience, which took one of various forms: intrafamily disagreements about the patient’s diagnosis and proper care that have caused family divisions or lack of mutuality between the caregiver and recipient; dissolution of extended family networks due to migration; socioeconomic stress and the need to take on multiple jobs, which preclude some members from offering assistance; and personal reluctance to provide care but perceived pressure from the community to do so.
Research challenging the romanticized reification of Latino families as a “monolithic, altruistic unit” (Ortíz, Simmons, & Hinton, 1999, p. 480), available and able to provide help, has spurred increasing study of the role of cultural values in caregiving not just among Latinos but among various minority groups. In a review of studies on the impact of familism on Latino, Korean, Korean American, Japanese American, and African American caregivers, Knight and his colleagues found that endorsement of familism varied across these groups in the expected way, with the least acculturated groups evincing the highest levels of familism. However, the expected relationship of higher familism with lower burden based on the idea that this value would indicate a willingness, desire, and expectation to provide care, was not consistent across ethnic groups, and in some cases high familism was actually associated with high distress (Knight et al., 2002). Further studies have replicated such findings (Kim, Knight, & Flynn Longmire, 2007). Rozario and DeRienzis (2008) explored the relationship between familism and psychological distress in female African American caregivers. They found that more traditional beliefs around caregiving were related to more depressive symptoms. Another recent study reports similar findings. Sixty-seven Latino caregivers reported on their experiences of family disagreements regarding care, depressive symptoms, feelings of burden, and physical health status on eight consecutive days. When caregivers perceived family disagreement regarding the care of the recipient, they experienced greater depressive and physical symptoms as well as higher feelings of burden. Those with the stronger familism beliefs were most sensitive to family disagreement (Koerner & Shirai, 2012). A study on the value of familism, comparing a group of caregivers in Spain to a group of Latino caregivers in the United States, found a positive and significant relationship between familism and depressed mood for the Spaniards, but not for the Latinos. In addition, for the Spanish sample there was a nonsignificant positive relationship between familism and burden. This relationship was negative and significant in the Latino sample (Losada et al., 2006; Shurgot & Knight, 2004).
What seems likely, given these findings, is that familism is a complex, multidimensional construct that does not function in a unitary way. More recent research supports this view. In a sample of 334 Spanish dementia caregivers, familism had a positive impact on distress if the extended family was perceived as being a source of support. However, other aspects of familism, including a sense of obligation to provide care in the absence of perceived pragmatic and emotional support to do so, resulted in increased distress (Losada et al., 2010).
Updating a Conceptual Model to Fit the Findings
The very influential stress process model of Pearlin, Mullin, Semple, and Skaff (1990) suggests that caregiver well-being (the outcome in the model) is affected by both primary stressors originating directly from the illness and care of the recipient, as well as by secondary stressors (family conflict, financial concerns, constriction of social activities) arising as a consequence of caring for the recipient. Internal coping resources and quality and quantity of social supports mediate appraisal of stressors, accounting for differences in caregiver experience. This process occurs in the context of the caregiver’s background, which includes race, ethnicity, culture, and socioeconomic status. Subsequent models have sought to bring such contextual factors to the forefront in an effort to understand the experiences of minority caregivers (Rozario & DeRienzis, 2008). In contrast to earlier conceptual models in which cultural values such as familism affect caregiver outcomes by influencing appraisals of burden, Knight and Sayegh (2010) have offered a revised sociocultural stress and coping model in which cultural values play a role by influencing coping resources such as social support available and coping styles employed. This model provides a better fit for the existing contradictory research described previously, supporting the idea that cultural values such as familism will be complex constructs varying between and within different cultural groups. Such complexity also calls for a rich, in-depth exploration of the value of familism using qualitative methods, as presented in this study. More researchers are now recognizing that qualitative approaches to research can provide important insights (Janevic & Connell, 2001; Knight & Sayegh, 2010).
We qualitatively explored the meaning of the concept of familism with 41 Latino family caregivers of persons with AD. We present our findings and discuss their implications for our understanding of the range of caregiver experiences and the provision of relevant services to Latino family caregivers of persons with this condition.
Method
Latino family caregivers whose views on and experiences with familism are described in this article were recruited through two separate studies. In the first, 14 self-identified Latino family caregivers of persons with dementia received the New York University Caregiver Intervention (NYUCI) developed by Mittelman et al. (1993). It consists of six individual or family sessions in the span of 4 months, followed by referral to an existing support group, and unlimited case management at the request of participants for the duration of the study, which lasted 2 years. The major aims of the sessions are (1) education around AD, (2) enhancement of social support for the primary caregiver, (3) promotion of communication with the person with AD and other family members, (4) problem solving around changes caused by the AD, (5) patient behavior management strategies, and (6) concrete planning around current and future care recipient needs. The sessions were conducted by a doctoral level social work student who was a licensed clinical social working. There were no specific questions asked of all participants, but, given the focus of the sessions, themes around the experience of care provision and the role of culture, family, and values in shaping the latter naturally emerged. In addition, participants completed preintervention and postintervention measures assessing depression (the Center for Epidemiologic Studies Depression scale [CES-D], 10-item, Radloff, 1977), stress (the Perceived Stress scale [PSS] Cohen, Kamarck, & Marmelstein, 1983), and subjective sense of burden (Caregiver Burden Interview, brief, Bedard et al., 2001), which are not the focus of this article.
Contact with caregivers, in person and by telephone and e-mail, ranged from 7 to 29 hours, with an average of 12 hour of contact per participant. In order to systematically document each encounter, the doctoral student, an experienced clinician, completed progress notes for each session. These included the date of the contact, the method (face-to-face or telephone), the location, and the time spent. The primary themes raised by the caregiver and a plan and follow-up for addressing any concerns were included. The progress notes also contained salient direct quotes from the participants. In addition to reviewing the progress notes, the researcher met for biweekly supervision with the doctoral student to discuss each participant. These supervisory encounters became striking for the consistency of themes around the complex way family relationships and the value of familismo affected the caregiving experience. There were caregivers reporting, for example, no help from extended family members, frankly aggressive encounters with relatives who did not believe in the AD diagnosis, community pressure to care for a husband married for convenience and not love. We became very interested in exploring this in greater depth and detail, particularly given the traditionally held view that Latinos rely on family to care for each other. Because the focus of this original study was on the impact of an intervention, we undertook a separate study.
In the second project, 27 additional caregivers participated in a mixed methods study with qualitative and quantitative components on the role of familism on Latinos’ caregiving experience. Nine standardized measures were used in the quantitative component. The Global Deterioration scale (GDS, Reisberg, Ferris, de Leon, & Cook, 1982) assesses the care recipient’s level of dementia based on caregiver report. Several measures assess the caregivers’ beliefs, attitudes, and actions around caregiving: The Willingness to Care scale (Abell, 2001), assesses caregivers’ self-perceived ability and willingness to perform certain functions; The Spanish Family Guidance Center Acculturation/Biculturalism scale (Szapocznik, Scopetta, & Kurtines, 1978) captures self-assessed level of acculturation and biculturalism; the Familism scale (Sabogal et al., 1987) measures respondents’ perceived obligations to provide material and emotional support to family; the Cultural Justification for Caregiving scale (CJCS, Dilworth-Anderson, Goodwin, & Williams, 2004) assesses participants’ reasons for providing care; the Mutuality scale (Archbold, Stewart, Greenlick, & Harvath, 1990) measures extent of shared values, affective closeness, and reciprocity between caregivers and care recipients; the Lubben Social Network scale-6 (LSNS-6, Lubben & Gironda, 2000) measures size and quality of social resources. Caregiver outcomes were assessed using the same instruments as in the first study: the CES-D, 10-item, the PSS, and the CBI.
The qualitative component had questions such as “Did your parents care for your grandparents?” “Does being from [country of origin] or having parents from [country of origin] affect your views on the role of family in caring for older adults? How so?” Participants were also asked to elaborate on their responses to standardized instruments once they had completed them, leading to discussions of formalized statements such as “I give care because my family expects me to provide care,” from the CJCS. The instrument is provided in the Appendix. In this article, we present data from the qualitative component of this study.
Interviews took between 1 and 2 hours to complete and were conducted in English or Spanish and at a location (usually participant’s home) based on participant preference. The researcher and two bilingual graduate-level students in social work completed the interviews. Responses in Spanish to the qualitative questions were translated by the researcher, who is bilingual and bicultural. One of these students was also the research assistant in the NYUCI project, so she had been immersed in the first sample’s descriptions of the role of family and cultural values on their caregiving experience, which facilitated data analysis, further described below.
Inclusion criteria for both studies were being age 18 or older and self-identifying as a Latino and primary caregiver for a family member with AD. Potential participants were recruited for each study through extensive use of fliers at relevant agencies and institutions (medical clinics, senior centers, churches, beauty parlors, bodegas [grocery stores]) in various neighborhoods of New York City (NYC) with high concentrations of Latinos. Advertisements for both studies were also run in the newsletter of the Alzheimer’s Association NYC Chapter and on their website. In both studies, participants voluntarily contacted the researcher for further information and were given detailed consent forms describing the study, outlining benefits and risks, and underscoring the voluntary nature of participation. Both studies were approved by a university Institutional Review Board.
There can be limitations in combining two different samples. However, in this case, we have taken only the qualitative data derived from participants meeting the same inclusion criteria and recruited in identical ways within less than a year of each other. While the first project was an intervention study, rich, detailed information about the role of family and the cultural value of familism in caregiving emerged organically. This serendipitously found material provided the impetus for the second study, specifically focused on further exploring familismo.
Sample Description
Of the 41 participants in this study, 35 were female and 6 were male. Twenty-nine were adult children, grandchildren, nieces, or nephews, 10 were spouses, one was a sister, and one was a family friend. They ranged in age from 29 to 75, with an average age of 45 for the adult children and 68 for the spouses. Twenty-seven participants had been born in Latin America (14 in the Dominican Republic, 7 in Puerto Rico, 5 in South American countries, and 1 in Cuba), and 14 were born in the mainland United States. Rather than asking participants directly about their annual household income, which we had discovered in previous studies many participants were reluctant to disclose, we asked caregivers to assess the adequacy of their income. Twenty-seven percent reported they “can’t make ends meet,” 29% reported they have “just enough, no more,” 32%“ have enough, with a little extra sometimes,” and 12% reported they “always have money left over.” Educational attainment among caregivers varied, with 20% reporting less than a high school degree, 22% achieving a high school diploma, 24% completing some college, and 34% reporting completion of college or graduate work. Sixteen caregivers worked, 9 were retired, 7 had been forced to discontinue employment because of caregiving, 5 described themselves as disabled, and 4 were unemployed and seeking work. Twenty-one caregivers were married or living with a partner, 12 were separated or divorced, 7 had never married, and 1 was widowed (see Table 1).
Caregiver Demographic Information (N = 41) for All Variables.
The care recipients ranged in age from 49 to 98, with an average of 79 years. They had been diagnosed with AD anywhere from 1 to 14 years prior, with an average of 4.7 years since diagnosis. All but one care recipient had been born in Latin American countries or Puerto Rico. Care recipients required significant assistance with activities of daily living and 4 scored 4 (moderate cognitive deficit), 16 scored 5 (moderately serious cognitive deficit), 16 scored 6 (serious cognitive deficit), and 5 scored 7 (very serious cognitive deficit) on the Global Deterioration Scale (Reisberg et al., 1982). Twenty of the caregivers resided with the care recipients. The amount of time spent caring for the affected family member ranged from 2 hr per week to full time (168 hr), with the average being 68 hr each week.
Data Analysis
The material gathered from both studies was examined using thematic narrative analysis (Braun & Clarke, 2006; Reissman, 1993, 2003). This approach was chosen because of the two principles undergirding it, which fit so well with the objective of the study: understanding individual caregivers’ experience of familism, an inherently socially constructed concept. The first principle is that “narration is a major way in which people make sense of their experience, construct the self, and create and communicate meaning” (Chase, 2003, p. 79). The second principle is that personal narratives are social in multiple ways: the act of telling the story is interactional, the narrative reflects broader social, cultural and historical conditions, and narratives play a specific role in specific communities and the broader society. As Chase (2003, p. 80) summarizes it:
When we listen carefully to the stories people tell, we learn how people as individuals and as groups make sense of their experiences and construct meanings and selves . . .[and] about the complexities and subtleties of the social worlds they inhabit.
This is exactly the type of rich, multilayered information we sought on the intricate topic of how the cultural value of familismo informed caregivers’ experience.
The data analyzed came from three sources: the progress notes completed by the doctoral student in the intervention study, her oral presentation of material from sessions to the researcher/supervisor, who took notes, and the responses to qualitative questions on the instrument in the second study, as recorded by the interviewers from participant report. The doctoral student and researcher met biweekly throughout the life of both studies. The additional research assistant in the second study only completed two interviews and did not participate in data analysis.
The progress notes, supervision notes, and interview notes conveying study participants’ narratives were analyzed for themes, a “patterned response or meaning within the data set” (Braun & Clarke, 2006, p. 82). The researcher did the primary coding but in the biweekly meetings the doctoral student reviewed and refined the codes, based on her extensive contact with participants. We began with themes and codes referring to specific ways beliefs and values around family and their role in providing care impacted caregiving. Thus, for example, there was a theme of extended family denial/disagreement with AD diagnosis, and the distancing it caused, and a theme of pressure from neighbors to provide care despite ambivalent feelings. We read all material with an eye to content on culture and values around family’s role in caregving. Any such relevant content was highlighted and categorized with a descriptive phrase. The material was discrete and clear so that there were no differences in categorization between the doctoral student and researcher. Subsequently, we further classified and categorized these key codes to create larger categories and themes, which are linked with particular examples and sections from the interviews. Through deep immersion with the material, including constant rereading, the initial open codes and more abstract themes from each individual interview were compared across participants for areas of agreement and difference in an iterative process. A theme was considered key not only based on how often it appeared but “whether it captures something important in terms of the overall research question” (Braun & Clarke, 2006, p. 82). We approached the analysis with a grounding in the emerging quantitative research and in our clinical experience with Latino caregivers indicating that the impact of familismo on their experiences was likely to be complicated and diverse.
Results
Familismo and Its Impact on Caregiving: A Complex Narrative
All caregivers interviewed recognize, as one phrased it, “the story they tell about us Latinos, that our families are so important, and that we are all taking care of each other without a problem.” However, the actual role and impact of familism on these caregivers is far more complex. For some caregivers the construct still provides meaning and support for their role, and as a group they experience caregiving as less burdensome than their peers in the study. For other Latino caregivers, the sharp contrast between familism, which they may value in a general, abstract way (or, if they do not, perceive their larger cultural group endorsing and expecting them to endorse), and the more personal, immediate negative feelings they are experiencing directly from caring for a relative with AD actually complicates their caregiving experience. Other Latino caregivers report familismo playing no role in their caregiving at all. We present these complex, multidimensional findings on the impact of familism on caregiving in the study participants’ own words.
Group 1: Familismo as a Facilitating Factor
For the smallest group of the Latino caregivers interviewed, congruent with the traditional view espoused in the literature, the value of familism provides a rationale for the provision of care to a relative and mitigates the experience of caregiving as a burden. For example, one 69-year-old daughter living with and caring for her mother stated:
My grandmother had Alzheimer’s and in my country the whole family helps the elders at home. There aren’t any old age homes. That’s what I saw growing up. I feel satisfied; I have done all I can for her.
A 61-year-old daughter caring for her 95-year-old father echoed this point of view:
In the Dominican Republic we don’t have the custom of giving our elders over to the government to place in an institution; we don’t consider them a bother—we take care of them.
Another daughter, 62 years old, had sent her 90-year-old mother to a social day treatment program for a few sessions but had discontinued her attendance:
They don’t know her like I do, all the little things she likes and needs. I can take care of her, so I don’t take her there anymore. God won’t give me more than I can handle. This is how you treat your parents, with respect. The family is responsible.
A 68-year-old sister caring for her older sibling reported a long history of mutual support:
When I came to this country and got sick, she came to help me with my kids. I found out about 3 years ago that she needed help. She was losing weight, the house was dirty. Her children weren’t helping. I brought her over here from Puerto Rico. That’s what family is for. And I feel serenity knowing that I did.
A 44-year-old daughter caring for both parents reported:
It was always understood that my sibling and I would care for my parents. My parents cared for their parents. I help my parents with almost all tasks. I enjoy caring for my mother; my mother cared for me for so many years. I enjoy doing for my father: it is sad to see him so dependent.
These caregivers felt strongly about the importance of family caring for each other, derived satisfaction from providing care, and did not express a sense of stress or burden in this role. For them, familism functioned in the traditional, expected way, giving meaning and support to their caregiving efforts.
Group 2: Familismo as a “Nonfactor”
There was a second group of caregivers, all adult children born in the United States, for whom, in the words of one son, “familism is a nonfactor, a nonissue, that is not influencing me at all.” For this group, the decision to provide care is driven by personal values and pragmatic considerations that are not recognized or acknowledged as being affected by individual or community-level endorsement of familismo. For example, a 49-year-old son helping care for his mother describes having been ostracized by the family because he is gay.
I was not a part of this family or welcome until recently [when they needed help], so I have trouble with the word family in the questions. I obviously feel I should, and do help the family, but had trouble with the word duty. I don’t do it out of a sense of duty, expectation or because my family is from Puerto Rico.
A 57-year-old daughter commented:
I don’t take care of him out of duty, but because I feel I want to do it. Whoever does it simply out of duty does it without love and will have more stress, tension and boredom.
A 42-year-old son echoed this sentiment:
I know the expectation is that Latinos take care of family and I’m taking care of my mother, but because it’s born in me to do so, not because I’m from Puerto Rico. She gave me life/being. Caring for her is born out of my soul.
One caregiving daughter stated: “I believe morally that I have to respect my mother and father, it is not cultural.” Another daughter described her personal value of treating others how she would want to be treated as guiding her decision to provide care: “I would want someone to be tender with me if I were like my mother.”
One daughter discussed her practical approach to care provision as simply doing what is needed: “It’s just something that needs to be done and I just do it.” Another daughter echoed this pragmatism, but acknowledged there is a broader context in which others might have certain expectations, although she does not conform to them.
You have to be very pragmatic. Your parent needs help but you have many other responsibilities. So I got help. I can’t do it myself, even if other people think that I should. That’s not my choice.
Thus, a subgroup of Latino caregivers explicitly disavow the role of familism in their decision to provide care to a family member, offering instead pragmatism or personal values as their guiding principles.
Group 3: Familismo as a Complicating Factor
For the largest group of caregivers in this study, the value of familismo actually complicated their experience of caregiving. There were various reasons for this. Foremost among these was that for a significant group of caregivers the ideal of providing care clashed with the reality of the physical and emotional toll of caring for someone with AD. A personal endorsement of familism, although intrinsically meaningful, did not translate into reduced burden or distress in the caregiving role because these caregivers were providing care in a larger environmental context in which the familismo they subscribed to was not “activated”; extended family members or larger social networks were not providing assistance and/or sufficient resources were not available to the caregiver for her or him to feel supported and avoid feeling burdened. Thus, for example, a 73-year-old woman born in the Dominican Republic who was caring for her 97-year-old mother reported feeling very isolated:
The people who live in this building are no longer friendly; they don’t help each other, even though they are from the Dominican Republic. It is because they are now more American, although that love is being lost even in the Dominican Republic. The culture used to be very close, people were very loving, but they have taken on the system of the Americans. Here one lives very alone.
A 68-year-old son caring for his 91-year-old mother described a long-standing personal valuing of familism, but was nonetheless experiencing physical and emotional distress in the caregiving role because of a similar lack of support in the environment:
I am very attached to my parents, I sent money back to them in Peru before they came here. I brought my mother here in 1991 when she became a widow. She was diagnosed in 1999. It was very hard. In Peru it’s different because everyone is together. Here I didn’t have anyone and also until she became a citizen it was difficult to get her services because she wasn’t eligible for benefits. I could only get her what I could pay for, which was little.
A 62-year-old wife also was experiencing stress because her expectation of support from social networks had not been met:
My family and friends have disappointed me because they haven’t been there for me— I blame the whole world for what is happening [the stress of caregiving] even though I know I shouldn’t.
This complaint of lack of support from extended family was fairly common: A 62-year-old wife of a man 21 years her senior who had not had children confided, “I don’t lean on the family for support because they don’t understand Alzheimer’s disease.” A 43-year-old woman caring for her mother stated, “I am disappointed with my family for not helping my mother. My sisters don’t help because they are more Americanized.” In some situations not only was help not forthcoming, but the family was actively adversarial. A 70-year-old woman not legally married to her partner of 23 years, who had developed AD 2 years prior, was taken to court by his daughter to get access to his bank account:
He had $25,000 and they took this from him. I take care of him 7 days a week, 24 hr a day, and no one else helps me. I’m accustomed to care for my family. I would never put my family in a nursing home. I quit my job to take care of my mother, who died last year.
Paradoxically, there were also more distant relations who had stepped in to care for relatives because the immediate families had failed to do so. For example, a 53-year-old nephew was helping his 81-year-old aunt because her daughters were not doing so. A woman had brought her sister over from Puerto Rico, as her nieces and nephews were not providing adequate care there.
There was also fear among caregivers currently caring for their parents that their own children would not provide assistance to them:
My father is lucky that I can take care of him and he is well attended to. I don’t know if I will have that luck, that my children will take care of me. Their lives are so much more complicated from living in the United States. They need to make more and more money and don’t have time for family.
Thus, although the value of familismo is important to these caregivers, and guides their decision to provide care, the experience is still perceived as difficult because of changing sociocultural norms in the United States that make it less likely extended family and social networks will support primary caregivers, instrumentally and emotionally.
In addition to the lack of a larger environmental context supporting familism, some Latino caregivers were unprepared for the sharp difference between what they imagined caregiving, as refracted through the lens of familismo, would be like, and the sometimes-grim reality of caring for someone with AD. Caregivers used striking language to describe their caregiving experience. One daughter reported:
It’s a commitment to God that I made to take care of my mother, but the body gets tired—I am destroyed spiritually and materially.
A 53-year-old daughter caring for her father tearfully recounted:
It is very difficult. One slowly erodes [from the caregiving] and sometimes I feel I will develop Alzheimer’s. I am so fatigued and drained.
Another daughter, also caring for four children and working full-time reported:
Sometimes because of the AD I feel I hate her. She says nasty things. I struggle with being patient. No one had warned me it would be like this.
Familismo also complicated caregiving for a group of caregivers who felt pressured either by an abstract adherence or the larger community’s embrace of familism to provide care when they themselves would not have wanted to do so. This group included wives whose husbands had been abusive during their marriage or who had married older men for security but not love. For example, one wife who had been a victim of domestic violence felt very conflicted about now providing care for her husband with AD, but had decided to stay and do so because “Latino culture says take care of your family even if they’re bad.”
There were two daughters who were caring for a father who had sexually abused them when they were young. As one of these daughters stated:
He has AD because of the bad things he did, it is a punishment for him. Because of what he did I am too angry and can’t open myself too much emotionally to helping him. I feel bad for not helping him because my mother always taught us to be caring and to be good to the elderly. But I don’t want to be near him.
There were also caregivers who incurred opprobrium from family or the larger community for what they did or failed to do that was perceived as going against the larger community’s value of family caring for their older relatives. For example, one daughter stated, “My family looks down on my decision to place him in a nursing home.” Another daughter, distanced for many years from her father, felt forced to action by others.
My parents divorced when I was little. My father was in the Dominican Republic by himself. I hadn’t had much contact with him but the neighbors were finding him out on the street, sleeping on the steps. And my boyfriend’s mother died of a stroke, so out of guilt—the neighbors were calling—I brought him here. But I put him in a nursing home.
Thus, for the largest group of Latino caregivers in this study familismo actually complicated their experience of caregiving. For some, their inherent valuing of familism was undermined by a lack of pragmatic and emotional support in the broader environment. For others, the difficult reality of caring for someone with AD was too sharp a contrast with the somewhat idealized view engendered by familismo of what care provision would be like. A third group felt pressured by the community to provide care, despite personal reluctance to do so.
Discussion
The rich descriptions of these Latino participants’ experience of the role of familismo in their provision of care to relatives with AD presents us with a complex, multidimensional view of the varied impact of this concept on the caregiving process. While traditionally Latinos have been viewed as enjoying extended family units that are ready, willing, and able to provide care, for the past several decades there have been findings at odds with this perception. Thus, more recent research has explicitly explored the role of familismo in caregiving and uncovered a relationship between familism and caregiver outcomes that is inconsistent across ethnic groups or, in contrast to the assumption that it would lead to greater acceptance and better caregiver outcomes, positively correlated with distress (Knight et al., 2002).
The present study’s rich, in-depth qualitative responses of 41 Latino family caregivers of persons with AD regarding their view of familismo and its role in their caregiving process help us to understand the within-group variability and seeming discrepancies in the quantitative research. Different studies have captured different aspects of the impact of familismo, and our qualitative interviews and analysis have allowed us to explore this variation.
The caregivers in this study fell into three distinct groups: those for whom familism functioned in the expected, traditional way; those who disavowed any impact of familism in their care provision; and those for whom familism complicated caregiving. The caregivers in the first group strongly endorsed familism, had strong memories of their parents caring for their grandparents, explicitly stated that they had been brought up with the knowledge that they would provide care for their aging parents, and chose to do so even when they had other options available, such as day treatment programs. They reported deriving satisfaction and made sense of the challenges through a reliance on religious and spiritual beliefs and a conviction that “family takes care of family.” Other researchers have similarly reported that for some Latino caregivers “family-centered norms also provided a context for positive perceptions of the caregiving experience” (Scharlach et al., 2006, p. 149).
The caregivers in the second group, who reported no role for familism in their caregiving, were all adult children who had been born in the United States. While aware of the value of familism in their community, pragmatism and personal values guided their caregiving. As a group, they reported a moderate level of distress in the caregiving role. One source of their disavowal of familism might be acculturation, an important concept that has been explored for its likely impact on perceptions of caregiving. For example, in a sample of 48 Latino caregivers, Shurgot and Knight (2004) found that familism was significantly associated with higher Latino cultural identification and lesser burden, but not depressive symptoms. They concluded that acculturation does not directly affect caregiver outcomes such as depression, but exerts an influence on the caregiving process through precursor variables such as familism.
For the third and largest group of caregivers, familismo complicated their experience of caregiving. There were several reasons for this. For some caregivers, despite personal endorsement of this value, familism, with the attendant reciprocity, solidarity, and involvement of relatives, was not actually facilitated by the sociocultural surround, leading to feelings of frustration, stress, and disconnection made all the more jarring because of the expectation of support that was not forthcoming. Losada et al. (2006, 2010) also offers this as a potential explanation for the finding of a positive and significant relationship between familism and depression in their sample of Spanish caregivers.
Some Latino caregivers, steeped in the value of familismo, were unprepared for the harsh challenges of caring for someone with progressive loss of cognitive function and self-care abilities. Thus, although they strongly endorsed familism, they reported great distress in their caregiving role.
Finally, there were a group of caregivers who experienced familism as an obligation imposed by their upbringing or by others to care for a relative toward whom they felt no attachment. This is similar to the conclusion of Kim et al. (2007, p. 573) that for some caregivers “familism may present obligation more than positive feelings about family support.” These caregivers as a group were mixed both on their endorsement of familism and on their experience of distress in the caregiving situation. For some, the distress came specifically from the feeling of being forced to provide care.
Through these rich, detailed descriptions we learn that familism, a powerful construct still central to many Latinos, is exerting influence on caregiving in ways previously not fully considered. Thus, it appears to have positive and negative aspects, depending on the broader sociocultural context and whether it is fully activated there through perceived support of extended family and social networks. Endorsement of familism leads to low distress in some caregivers with less external stressors and greater support, and higher distress in others, made even more glaring by the discrepancy between what their endorsement of familism led them to believe caregiving would be like, and their actual experience. There are also some caregivers feeling obligated to provide care by their broader group’s endorsement of familism. Finally, there are Latinos who disavow an impact of familismo on their decision to provide care.
Limitations
There are various limitations to this study. The first is that the sample size is only 41 and is restricted to caregivers providing care specifically to relatives with AD. In addition, we have used the term Latino as shorthand for describing a tremendously heterogeneous group, as demonstrated even by our own sample, in terms of factors such as country of origin, socioeconomic status, and immigration history. In addition, we included both adult child and spouse caregivers in the sample, and family relation is likely to impact the caregiving experience. Thus, it is important that future research attempt to differentiate between subgroups of Latino caregivers along these various dimensions. That said, the diversity of responses we found even in this small group indicates the importance of understanding familismo as a complex phenomenon as it relates to caregiving.
Implications and Conclusion
A significant assumption underlying policies and services for older adults is that families will provide the assistance needed (Parrott & Bengtson, 1999). Findings from this study provide us with a more nuanced understanding of familismo, one at odds with the simple, comforting version of all Latino families fully desirous and capable of caring for older adults without complaint or struggle. The unsubstantiated view that Latinos do not want or require formal services or support for themselves in providing care may be inhibiting service providers from developing and extending appropriate resources to this population. In deconstructing this stereotype, our participants’ descriptions of their caregiving experience force us instead to consider the diversity among the needs and experiences of these caregivers, and the importance of tailoring policies and services accordingly (Llanque & Enriquez, 2012). While indeed some Latino families are able to fully care for their older members, others cannot, or are doing so at great cost to themselves and, ultimately, the care recipient. Policy initiatives that, for example, provide caregivers with tax credits for caregiving would facilitate provision of care for some families (Silverstein & Parrott, 2001).
From a practice standpoint, development of services incorporating a more complex understanding of the role of familismo might entail supporting a caregiver reluctant to admit a fragile relative to a long-term care facility to make this medically necessary decision, while for another Latino caregiver cultural sensitivity might entail acknowledgment of their reluctance to become a caregiver, despite their perception that their relatives and neighbors expect them to do so.
Furthermore, if we do not critically examine the concept of familism, we run the risk of failing to understand the experience of significant groups of Latino caregivers, including those for whom it actually complicates caregiving. A combination of theoretical frameworks on the role of culture in caregiving, revised based on emerging quantitative research, enriched and contextualized by qualitative research, will get us closer to a fuller understanding of the complex and varying impact of familismo on Latino family caregivers’ experience. The present study documents the variation of this social concept as it fits into the lives of a set of caregivers whose diversity of experience could easily be missed if they were merely summarized by their demographic categories.
Footnotes
Appendix
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, authorship, and/or publication of this article: This project was supported in part by a grant from New York University’s Research Challenge Fund and the John A. Hartford Foundation, Hartford Faculty Scholar in Geriatric Social Work Program.