Abstract
This study used an ethnocultural approach to explore how cultural factors influenced ethnically diverse dementia caregivers’ experiences and use of services. A modified thematic analysis of in-depth interviews with 15 caregivers, ranging in age from 50 to 75 years, including spouses, daughters, sons, cousins, and a friend, from three minority groups—African American, Hispanic, and South Korean caregivers—was conducted by a team of multi-lingual researchers. Caregiver stress was pervasive across all subgroups. Several themes emerged that were qualitatively different across groups, including knowledge about dementia, language barriers, religion and spirituality, and cultural differences in attitudes about caring and formal services. A two-pronged intervention model that includes a generic intervention to reduce caregiver stress along with a culturally targeted intervention tailored to a family’s language, food preferences, religious practices, gender norms, and other values was recommended to more successfully reach and support these caregivers.
Introduction
Population aging is a global phenomenon, and age is the strongest risk factor for dementia, so the number of older persons living with dementia is expected to increase exponentially over the next 30 years. Experts estimate that 46.8 million people worldwide are living with dementia, and that number is expected to rise (most rapidly in low, lower middle, and upper middle income countries) to 74.7 million in 2030 and 131.5 million in 2050 (Prince et al., 2015). Dementia adversely affects caregivers’ health more than other chronic physical and mental disorders due to the demands of attending to persons with dementia (Alzheimer’s Association, 2016). The World Health Organization (2016) recently recommended a specific action area (Action area 5) to support dementia caregivers with the goal that 75% of countries provide support and training programs by 2025.
The increase in the number of members of ethnic minorities in the United States who are aged 65 or older similarly means that more older persons from diverse backgrounds will have Alzheimer’s disease (AD) and other dementias. In addition, current data from the National Alzheimer’s Association show that older African Americans are about twice more likely and that Hispanics are about 1.5 times more likely to have AD, than older whites (Alzheimer’s Association, 2016). The prevalence of AD among Hispanics and African Americans is especially high among the young-old (those aged 55–64). Data on the prevalence of AD among Asian Americans are lacking even though they are the fastest growing racial group in the country, increasing by 43% between 2000 and 2010 (Humes, Jones, & Ramirez, 2011). Older Asian Americans and their caregivers are one of the least studied minority groups in the United States despite their unique social and cultural characteristics, which scholars investigating AD and caregiving need to understand better (Alzheimer’s Association, 2016; Casado & Sacco, 2012; Yoo, Musselman, Lee, & Yee-Melichar, 2015). More Asian Americans (25%) report that they are caring for someone with AD than Hispanics (17%), African Americans (22%), and Whites (24%). Most of the available information about Asian American dementia caregivers is from studies of Chinese Americans (Dilworth-Anderson & Gibson, 2002; Nápoles, Chadiha, Eversley, & Moreno-John, 2010). Given that these ethnic groups will include increasing numbers of dementia caregivers in the future, the purpose of this study was to explore cultural factors underlying these caregivers’ experiences and use of services.
We use an ethnocultural research design to avoid imposing preconceived stereotypes about dementia caregiving. Wendt and Gone (2012) recommend using qualitative methods because they emphasize reflexivity, strive for thick description, give voice to participants, and reveal the complexities and subtleties underlying culture. We are especially interested in caregivers’ use of and attitudes about nursing homes, hospitals, and community-based services. In contrast to previous studies that indirectly tested outcomes of interventions, we directly asked participants about service use in this study. We frame this investigation within the context of Knight and Sayegh’s (2010) updated sociocultural stress and coping model of caregiving, described below.
Conceptual framework: Sociocultural stress model
Until recently, the predominant conceptual perspective that scholars used to study caregiving of loved ones with Alzheimer’s disease has been Pearlin and colleagues’ stress and coping model (Pearlin, Mullan, Semple, & Skaff, 1990). This model consists of four domains (1) the background and context of stress, (2) the stressors, (3) the mediators of stress, and (4) the outcomes or manifestations of stress. Aranda and Knight (1997) expanded this model to take into account ethnic differences in dementia caregiving. They added an “ethnicity/culture” component to the stress and coping model arguing that ethnic background and cultural factors influence caregiving outcomes, including cognitive appraisal of caring, stress, burden, and mental health.
Many researchers have applied Aranda and Knight’s model to study ethnic group differences in dementia caregiving and have found commonalities as well as differences in caregiver stress across ethnic groups. Recent data collected by the National Alliance for Caregiving (NAC) and AARP, formerly the American Association for Retired Persons, for the Alzheimer’s Association (2015) indicate that Hispanic (45%) and African American (57%) caregivers experience higher burden from caregiving than White (33%) and Asian American (30%) caregivers. However, some studies have suggested that African American dementia caregivers may experience less of a burden than Whites (Bekhet, 2015; Pinquart & Sörensen, 2005). Sörensen and Conwell (2011) compared Hispanic and Asian American dementia caregivers to White dementia caregivers and found no differences in caregiver burden although the minority caregivers reported more depressive symptoms than the White caregivers. Still others (Knight and Sayegh, 2010; Sayegh and Knight, 2011) have argued that minority dementia caregivers experience stress differently from White caregivers. For example, ancestral family values and life experiences shaped by historical traumas, such as oppression, are often transmitted through generations of family and affect the caregiving experiences and well-being of ethnic minority individuals (Lindauer, Harvath, Berry, & Wros, 2016; Schultz, Walters, Beltran, Stroud, & Johnson-Jennings, 2016; Walters, Beltran, Evans-Campbell, & Simoni, 2011). Caregiving for individuals with dementia among Asian Americans also varies depending on cultural factors. For example, daughters-in-law typically care for their husbands’ parents in Korea (Youn et al., 1999).
Knight and Sayegh (2010) updated Arandt and Knight’s original model by proposing a sociocultural stress and coping framework that includes two parts: (1) a common core and (2) a cultural focus. The common core reflects shared caregiver stress, that is, similarities caregivers experience across different ethnic groups that are based on the behavioral problems manifested by the people with dementia. This stress leads to caregiver burden, a central component of the common core model, which ultimately affects a caregiver’s health. Knight and Sayegh explain that the common core model applies across ethnic groups while the cultural focus is group-specific. Cultural values vary by locality, ethnicity, and attitudes about familial obligations. Cultural influences affect caregivers’ coping styles and receptiveness to formal care services, such as home- and community-based care, according to Knight and Sayegh (2010).
Knight and Sayegh (2010) argue for a more nuanced understanding of the culture that is independent of ethnicity. For example, they maintain that cultural values such as familism or filial piety are contextualized as second-order constructs, including familial obligation and perceived support from family, that vary along a continuum. These values presumably interact with caregivers’ coping styles and social supports that, together with common stressors, determine a caregiver’s health.
Recent reviews of the literature confirm that cultural influences on caregiving are more complex than researchers have previously assumed (Dilworth-Anderson, Pierre, & Hilliard, 2012; Gallagher-Thompson, Solano, Coon, & Arean, 2003). For example, in a comparison of African American and White caregivers of persons with Alzheimer’s disease using The Cultural Justifications for Caregiving Scale (CJCS; Dilworth-Anderson, Goodwin, & Williams, 2004), Dilworth-Anderson and colleagues (2005) found that culture influenced caregivers’ experiences more than racial differences. In addition, Knight and colleagues (2002) reviewed the literature and observed that familism varied in accordance with acculturation to Western ideas.
Other studies support Knight and Sayegh’s conceptualization of caregivers’ well-being. For example, Vickrey and colleagues (2007) observed similarities as well as differences after conducting focus groups with ethnically diverse dementia caregivers. Chun (2004) and J. Kim (2004) concluded that cultural factors were especially relevant to ethnically diverse dementia caregivers’ comfort in using services. Sun (2014) found important differences when comparing Chinese with Chinese American dementia caregiver's access to services and other resources that help with caregiving. These findings underscore the need for further inquiries, using ethnocultural methodologies and culturally relevant theoretical frameworks, into how culture influences dementia caregivers’ use of supports.
We frame our study within the context of Knight and Sayegh’s (2010) updated sociocultural stress and coping perspective by organizing our analysis around similarities (shared caregiver stress) and culturally based differences (coping styles and other resources) across diverse ethnic groups. We directly inquire about how cultural factors might have influenced the use of services. In order to enhance rapport and credibility of our investigation, we apply an ethnocultural research design guided by a diverse team of “insiders” who know and literally speak the language of our participants. We also use a qualitative research approach to illuminate the nuances and complexities underlying dementia caregiving among minority groups.
Research questions
The following questions guided this research: (1) What similarities in caregiving emerged across these participants? (2) What differences appeared? (3) How did culture influence the use of services?
Methods
Research design
An ethnocultural methodology considers the influences of culture and ethnicity on dementia caregivers’ experiences. This approach prioritizes culturally competent research methods, the relational interview, collaborative teams, ethics, and cultural sensitivity (Nagata, Suzuki, & Kohn-Wood, 2012). The intent is to uncover shared cultural meanings by including researchers and interviewers from diverse backgrounds who can gain rapport and literally speak the language of the participants (E. Kim & Green, 2012).
Researchers from diverse backgrounds comprised an advisory committee of experts who were knowledgeable about dementia caregiving among ethnically diverse populations. The intent was to create a committee of investigators who were able to build trust and rapport with participants, understood the culture, and could easily juggle an “insider–outsider” role. Local researchers who were insiders, outsiders, and from “the spaces in between” strengthened the cultural sensitivity, reflexivity, and ethical considerations involved in all aspects of this study.
We utilized multi-lingual researchers, which allowed us to include dementia caregivers who typically are excluded from research on minority populations. We concur with E. Kim and Green (2012), who used a similar approach that sharing a language reduces the inherent divide between interviewer and interviewee. Moreover, we were able to acquire knowledge from a more diverse group of minority dementia caregivers, which was the purpose of this study, by including non-English speaking caregivers. Although we provided our Hispanic caregivers with opportunities to speak Spanish during interviews, only our South Korean caregivers chose to be interviewed in their native language. We followed the translation processes, and specifically a Back-translation approach, as recommended by Knight, Roosa, and Umaña-Taylor (2009). This includes two steps. After our research expert had translated the data that were transcribed verbatim into English, the translation was double-checked for errors by a second, independent person, which allowed for consideration of conceptual and semantic equivalence in both languages.
The experts were involved in all phases of the research, including identifying the research problem, developing research questions, collecting data, analyzing and interpreting data, validating findings, and writing up the results. By involving a diverse team, we were able to reduce investigator bias and ensure that the interpretation of data was not based on one person’s conclusions (Green, Creswell, Shope, & Plano Clark, 2007; E. Kim & Green, 2012). The credibility and success of an intercultural investigation depend on incorporating multiple viewpoints and a collaborative approach that considers inter-and intra-cultural variations.
We applied a thematic analysis of transcribed, audio-taped in-depth interviews (Braun & Clarke, 2006). Our analysis focused on the identification of themes, that is, underlying ideas, assumptions, and conceptualizations, through a coding process that progressed from description to interpretation. A thematic analysis is more appropriate when small samples are used to identify, analyze, and report patterns within data (Braun & Clarke, 2006). We did not engage in theoretical saturation or sampling, typically important when using grounded theory methods, because our focus in this investigation was on themes.
Study sample
Given our intent to develop an in-depth understanding of minority dementia caregivers’ experiences, we used a purposive sampling strategy to identify potential participants who were Hispanic, African American, and South Korean.
We interviewed five participants from each subgroup, comprising a total sample of 15 caregivers. We used individuals’ self-reports of race and ethnicity, similar to the method used by the U.S. Census and most national surveys, to identify subgroups. Participants were selected primarily from a typically Midwestern area in Ohio, but we conducted interviews with South Korean caregivers in Los Angeles given the prevalence of, and our access to, the South Korean community in this region. We targeted caregivers based on our eligibility criteria and their capacity to inform us about their caregiving experiences. Eligibility criteria were being over the age of 40 and assisting a person whom a physician or other health professional had diagnosed with Alzheimer’s disease or related dementia. Previous studies (e.g., Fingerman, VanderDrift, Dotterer, Birditt, & Zarit, 2011) indicate that those over the age of 40 are more likely to have a living parent or spouse with dementia. We adopted the definition of a caregiver used by the National Alliance of Caregiving, which includes a primary or secondary caregiver of someone who requires supervision and has been identified as having dementia or cognitive impairment by a physician or other qualified health professional (National Alliance of Caregiving & AARP, 2009). We did not restrict our recruitment to spouses or adult children because previous studies have indicated that minority caregivers have a more diverse support group than nonminority caregivers (Dilworth-Anderson, Williams, & Gibson, 2002; NAC & AARP, 2009).
We used various recruitment strategies to invite caregivers to participate. We advertised the study through informal and formal means using a consistent script to solicit participants. This strategy included posting notices about the research at local community and area agencies on aging and Alzheimer’s disease associations. Case managers working with caregivers who might be interested shared flyers with potential participants. Most Hispanic and African American caregivers who participated in this research had some contact with the Alzheimer’s Association. A more snowball strategy was used with community agencies to recruit South Korean dementia caregivers. Those who were interested in participating were contacted through a follow-up phone call or meeting to explain more about the purpose of the study and to assess whether the caregiver met the eligibility criteria. Although we sought caregivers who understood English, our interviewers were prepared to speak Korean or Spanish if they preferred to communicate in these languages.
Caregivers were invited to participate after we explained the objectives of the study, outlined our expectations for their involvement, and responded to any questions they had. Potential participants were informed that interviews would be audiotaped and require about an hour of the caregivers’ time, and that a second interview would last between 30 and 45 minutes and involve checking with the participant about the interpretation of the interview. We began interviews after participants signed appropriate consent forms in accordance with the procedures of the Institutional Review Board. Participants were compensated with a $50.00 gift card for a retail establishment of their choice at the completion of each interview. All interviews were conducted at a place that was convenient for the participant.
Data collection
Three “experts” who were part of the advisory committee conducted the interviews, which lasted an average of 90 minutes. Our interviewers had doctorates in social work, backgrounds in quantitative and qualitative research, and experience interviewing older adults from ethnically diverse backgrounds. Based on input from our experts, we asked several broad, open-ended questions about participants’ caregiving experiences as well as focused questions, such as how their values and background influenced their experiences and use of services. See Table 1 for a list of the 10 questions we asked. We conducted two interviews, one of which involved member checking, at a site chosen by the participant.
Interview guide.
Members of the advisory committee created a training protocol that interviewers used to prepare for their meetings with participants. This enhanced training consistency across interviews reduced potential stereotyping of caregivers and accounted for cultural issues that enhanced rapport and communication with participants.
Data analysis
After the interviews had been transcribed, all members of the advisory team reviewed the transcripts for accuracy. We used ATLAS.ti to organize and code the data. Given our inability to carry out saturation or theoretical sampling, we followed Braun and Clarke’s (2006) step-by-step guide to thematic analysis that included (but was not limited to) six phases: (1) familiarization with the data, (2) generation of initial code, (3) identification of potential themes, (4) reviewing themes, (5) defining and naming themes, and (6) producing the report. This analysis was recursive, moving back and forth throughout these phases. Two lead authors scrutinized the transcripts line-by-line and began with open coding that involved initially assigning key words and phrases to data segments (Glaser & Strauss, 1967). This initial process was primarily inductive. As codes evolved, we used constant comparison methods to compare new codes with previous ones to consider conceptual similarities and differences. Inter-rater agreement was computed, and both authors agreed 80% of the time. The few differences that emerged were resolved through discussion until an agreement was reached. In addition, other members of the team reviewed the transcripts. Once concurrence about the themes was reached, the experts conducted a second interview with participants to seek their input. This served as our member checking process. No discrepancies between participants’ and researchers’ conclusions were found.
We used multiple strategies to address potential investigator bias and to enhance the rigor and credibility of this study. These included member checking, peer debriefing, triangulation, memoing, and audit trail. Peer support and debriefing occurred throughout the study, and raw material and documents were preserved for an audit trail. The use of an ethnocultural team comprised of interviewers and investigators from diverse backgrounds who were involved in the interpretation of findings allowed us to conduct triangulation by multiple analysts, one of four types of triangulation that Patton (1999) has identified.
Beyond consideration of confidentiality and informed consent from participants, we attended to several other ethical considerations by sensitizing ourselves to the cultural variations in caregiving that our participants confronted. This was accomplished by using the members of the advisory committee in the development of the research questions and interview guide and in the coding and analysis of the data. In addition, interviewers referred caregivers to supportive and other services in their communities when appropriate, and findings from this study will be shared with community agencies to help practitioners better serve culturally diverse dementia caregivers.
Results
Description of participants
The characteristics of our participants and their relationships to care recipients are presented in Table 2. The sample was comprised primarily of females; only four participants were male. The relationships between caregivers and care recipients varied; they included six daughters, two sons, five spouses, a cousin, and a friend. The caregivers ranged in age from 50 to 85, and the care recipients were from 57 to 100. The average age for the South Korean caregivers was 66, and the care recipients averaged about 85 years old. The Hispanic caregivers averaged 64 years old while the care recipients, who were the oldest of the three groups, averaged 88 years old. The African American dementia caregivers were on average 58 years old and thus younger relative to the other caregivers. All participants from the South Korean subgroup were female, including three daughters and two spouses. The African American dementia caregivers were mostly female but included one son, and the Hispanic group was comprised of three males and two females. We present our findings in the next section in accordance with our three research questions.
Demographics.
Similarities across groups
Caregiver stress was a major theme that emerged in response to the first research question, but it was manifested in different ways depending on the context. Physical health, psychological distress, and financial pressures presented below using the words of the participants were the most salient themes expressed across the three cultural groups.
Physical health problems. Many participants reported bodily aches and pains, insomnia, or other physical health problems. For example, one Korean woman caring for her 91-year-old husband remarked: So, my body is aching more and more. Every morning and night I take a handful of medicine. It’s too much for me. I was so stressed out that I felt like I can’t do this anymore, and there was a tranquilizer I got from doctor, so I took it and I was ok (K1, 16).
Sleeping during the night was a common problem for participants. A 55-year-old African American daughter explained, ‘… the challenge was getting a full night’s sleep, because she would get confused, and she would roam around’ (A1, 11). A 57-year-old Hispanic son caring for his mother stated ‘And if my mom is very active, she will go to sleep, but she will get up and come back and look at me if I’m here, or she will hear noises, saying that there’s somebody here’ (H1, 8). A Korean woman similarly explained that ‘Now, I can’t sleep without sleeping pills. When I sleep with my mother, she walks around all night. She walks around and talks’ (K2, 2–3).
Psychological distress. Psychological stress, including feelings of loss, depression, confusion, and hopelessness, was also common. One Korean woman remarked: People think that taking care of babies and elders are similar. I took care of babies, and I’m taking care of my mom now, but when it comes to taking care of a baby you get happy moments. There is no fun here. That’s the reason I get depressed. (K2, 5) It was very heartbreaking because my mother was a very sharp-minded person. You know she had done everything right. She had eaten well, she exercised her mind, she was always active, people oriented, socially oriented, went to church. It was kind of heartbreaking to see this happening to her with no clue as to why it was happening. (A1, 8) And at one point, I was crying every day, you know. This journey, it’s a new experience I think because it’s something, it’s hard to go through it because it is hard to understand. I can’t figure out why he can’t remember certain stuff, you know. (A4, 4) Every day I feel like I’m bound. I haven’t left outside the door for the past 7 years. I want to go travel …. But how could I just leave him by himself? And there’s no one out there to leave him with. If I were to save this person [her husband] I had to give myself up. (K4, 15 & 17)
Differences across cultural groups
The second research question, which focused on differences across cultural groups, was organized around the following themes: knowledge about dementia, gender expectations, familial and intergenerational conflicts, and cultural differences regarding religion and spirituality.
Knowledge about dementia. One Korean spouse explained, ‘Dementia happened suddenly and there were no signs. His eyes were somewhat different than usual. So I talked to him but he wasn’t the same’ (K4, 1–5). Another Korean daughter said, ‘… this happened all of a sudden, it was [not] totally expected. I thought maybe I have to take her to a mental hospital’ (K2, 2–5). This Korean daughter remarked, ‘I believe that dementia can be cured if your descendants are around you’ (K5, 18).
The Hispanic and African American caregivers knew more about dementia, although they, too, struggled with how to manage symptoms. This Hispanic son stated, ‘Usually, you know, a typical dementia will develop in the late 60’s, early 70’s’ (H1, 12). An African American daughter commented, ‘And to think that there was no cure, no real treatment to, you know, to prevent it …’ (A1, 8).
Gender roles. Expectations about gender roles sometimes resulted in family conflicts. For example, one female Korean caregiver stated: Sons help economically [in Korea] but actually living and serving [parents], it’s the job of the daughter-in-laws but you, they don’t really do that job. Sons who really love parents give stipends or something. If sons are good to their parents, their wives are as good. (K3, 19) In my mother’s generation, it was all about the son. The young generation these days leaves their parents because they don’t like them. The dementia causes the descendants to abandon them. Our generation is the last generation that [believes] we must always take care of our parents no matter what. (K5, 13 &15). But as a son, it’s really sometimes when she is fully aware, she wants to keep the privacy for me not coming, you know, close to her. An example is when she takes a shower, she can do her shower by herself. So there’s a lot of things that, you know, I mean, there’s a barrier because of the relationship of a son and the mother. (H1, 8)
Cultural influences on use of services
Our last research question focused on how cultural differences affected the use of institutional and community-based services. Three themes—attitudes about nursing homes, cultural barriers in the use of community services, and challenges associated with language differences—emerged in response to this question.
Nursing homes. The Korean caregivers expressed strong negative feelings about nursing homes, especially concerning food. Similarly, many Hispanic caregivers expressed reluctance about using nursing homes; a 62-year-old Hispanic caregiver explained: Well, for instance the nursing home is a place where you go to die. Parents are supposed to, kids are supposed to take care of their parents. What’s easier, when you are in a country with siblings and family around, when here, people who have come to this country, like my ex-wife or myself, we don’t have anybody else, and the parents expect you to take care of them. (H3, 13)
A Korean daughter said, ‘Yes, dementia patients go to such place [nursing homes], but I have never seen one with my own eyes’ (K2, 16).
Some Korean families tried to use nursing homes but found that they lacked cultural sensitivity. One daughter who visited her mother in a nursing home complained about the food: At first they only gave her porridge since she doesn’t have any teeth—considering her age. My Mother really didn’t like that …. They told me that they can give her rice if we get the doctor’s signature. My mother relaxed after eating rice. (K5, 6) … The reason I don’t send my Mother there [to a nursing home] is that once there, people’s conditions exacerbate. So, to prevent any potential accidents they have no other choice but to restrain people. They put the patients to sleep. (K3, 17)
Korean communities can provide support, but cultural differences in knowledge of dementia and in understanding this condition may explain why these caregivers reluctantly seek out supportive services. One Korean daughter seemed lost about where to find care for her mother and said: She [my mother] came over [from Korea] after 60. But she had to be separated from her sons and she must have longing for them. She doesn’t know much about this society. So it’s harder for her to overcome her loneliness. (K2, 12)
Language barriers. Difficulty speaking English interfered with some Hispanic and Korean families’ successful use of services. For example, A 57-year-old Hispanic son commented, ‘One of the difficulties in this area is that Spanish- [speaking] caregivers are very limited. I have to write sentences for the nurse or for the care providers there’ (H1, 3). A 62-year-old Hispanic cousin explained, ‘It’s hard to find a place for somebody who is not English speaking. I hope that more multilingual people [will be] available to help some of the elderly that do not have the language ability’ (H3, 2). A Hispanic daughter cautioned, ‘With immigrant communities, service providers need to be keenly aware that individuals might say that they understand what they’re being said in English, but in reality they don’t’ (H2, 6).
The Korean caregivers also struggled with language problems that interfered with their success in obtaining support. For example, one Korean woman caring for her husband remarked, ‘I don’t know how to speak English so I can’t say anything anywhere’ (K4, 17). A Korean daughter said: My mother does not go to places with many people. She said she’s afraid of the people. Even after she came over to the States there is no place she could go as she likes. She needs help. She can’t speak, read, or write in English. My mother, I think she felt very lonely. (K2, 12)
Discussion
We used an ethnocultural framework to explore the caregiving experiences of South Korean, Hispanic, and African American dementia caregivers. Our intent was to uncover themes that would shed light on the diversity of dementia caregivers’ experiences and their use of services, at a time when Alzheimer’s disease is increasing at a more rapid rate among minority persons than it is among non-Hispanic whites (Alzheimer’s Association, 2016).
Our first research question sought to identify similarities across ethnic groups. In support of previous research and the common stress model, we found that caregiver stress was pervasive across all subgroups, which is consistent with previous studies that have found more caregiver stress among dementia caregivers regardless of ethnic background compared to nondementia caregivers (Alzheimer’s Association, 2009). Caregiver stress challenged caregivers on many levels but especially with respect to managing their physical health and juggling work with caregiving. Participants experienced physical stress as a result of their caregiving, with many reporting lack of sleep or difficulty sleeping. Several caregivers experienced psychological stress, such as feeling “trapped” in the caregiving role, and loss that the person with dementia would never be the same again.
Our second research question focused on differences across subgroups. Several themes emerged that were qualitatively different across minority subgroups, including knowledge about dementia, cultural attitudes about caring (such as filial piety and gender roles), and language barriers. The view that mental decline is an expected part of the aging process, and a lack of information about Alzheimer’s disease, were most prominent among the Korean and Hispanic dementia caregivers. Other studies have similarly found limited knowledge about dementia and Alzheimer’s disease in these populations (Population Reference Bureau, 2013).
Inter-generational gender role issues surfaced as a major area of conflict, especially among the Korean American caregivers. Previous research has suggested that sons are valued more highly than daughters in South Korean culture and thus are more involved in caregiving; however, our findings suggest that the daughters were involved more often with hands-on caring and that sons contributed more economic support (e.g., M. Lee, Yoon, & Kropf, 2007). Similar to previous research on South Korean caregivers (M. Lee et al., 2007), we found that the level of dependence and subsequent needs of the person with dementia affected caregiver stress. Gender roles may be more fluid in caregiving than researchers have previously reported (Calasanti & Slevin, 2001; Calasanti & Bowen, 2006; Chappell, Dujela, & Smith, 2014). Although tensions arose among siblings, we found few comments about the type of relationship between the caregiver and care recipient; this is not surprising given the lack of spouses in our sample.
Our third research question focused on the intersection of culture and use of services. We hoped to shed light on cultural influences that might help practitioners develop more culturally competent and evidence-based interventions. In addition, we sought information that practitioners and policy-makers might utilize to improve their outreach to minority dementia caregivers, who are generally averse to placing loved ones in a nursing home. The cultural value of filial care and “taking care of one’s own” emerged several times. Many Hispanic caregivers felt obligated to care for loved ones in their homes. Similar results have been observed in other studies (S. Lee & Lee Casado, 2011; Valdez, Lumadue, Guitierrez, & de Vries-Kell, 2005).
The Korean American dementia caregivers especially evidenced stress about the use of nursing homes. The sources of this stress most often focused around cultural differences, such as food and language. Korean American caregivers also were adversely affected by lack of knowledge about dementia, which acted as a barrier to receiving help, including medical care. On the other hand, African American caregivers involved in Medicaid-waiver programs that provided community-based care evidenced the least stress.
Language barriers were problematic for the Hispanic caregivers and even more problematic for the Korean caregivers. Many previous studies (e.g., Dilworth-Anderson et al., 2012; Lee Casado, Lee, Hong, & Hong, 2015) support our findings that Spanish- and Korean-speaking caregivers need help navigating the dominant service paradigm, which is primarily English speaking, and that language barriers remain an obstacle to service utilization. In several states, no Spanish-speaking nursing homes are available for elderly parents who need 24-hour care with eating, toileting, and sleeping, and do not speak English.
Previous research has shown that religion and spirituality are relevant cultural issues, especially among African American caregivers who report benefits from caring and ultimately grow from their experiences (Heo & Koeske, 2013; Sheridan, 2013). However, service providers with a dominant secular culture are generally separate from religious-based services (Nápoles et al., 2010; Sun, Kosberg, Leeper, Kaufman, & Burgio, 2010).
Our findings are consistent with Knight and Sayegh’s (2010) updated sociocultural stress and coping framework emphasizing a more nuanced effect of culture on caregiving and use of services. First, we found support for the common core model of caregiver stress that was manifested most often in sleeping problems. Psychological challenges related to care recipients’ cognitive limitations as well as financial pressures were shared across groups, although financial pressures will vary depending on the health care system.
The differences across ethnic groups operated through coping styles, such as spirituality and religious involvement, and resources, including language and cultural differences with respect to gender roles, attitudes about care, and knowledge and understanding of dementia. These cultural variations are consistent with the updated sociocultural stress and coping model and with Knight and Sayegh’s conclusion that we need to focus on group-specific, that is, local, cultural values when serving ethnically diverse dementia caregivers. Thus, we observed that the Korean caregivers’ expectations about family and gender roles varied depending on a person’s generation and living situation. Similarly, we learned that sons are caregivers but typically within the context of a culture’s gender norms. Cultural values intersected with gender, social class, and language skills. These results were consistent with the updated sociocultural stress and coping model. They also underscore the need to examine how cultural values interact with other characteristics of the caregivers. These cultural influences have important implications for practitioners working with ethnically diverse families.
The results suggest the importance of using multi-dimensional assessments that consider the ways that race and ethnicity, cultural values, gender, and knowledge about dementia can be incorporated in the development of culturally tailored interventions. Sun (2014) recommends partnering with family, community, and service providers when creating multi-component intervention models in order to ensure that Chinese cultural factors are incorporated for Chinese family caregivers. Miller and Guo (2000) as well as Gelman, Sokoloff, Graziani, Arias, and Peralta (2014) explain that, compared to White caregivers, non-White caregivers are less likely to be a spouse and more likely to be a friend, adult child, or other family member. In addition, they are often younger, caring for young children in the home, less educated, and living in poverty. Gelman, Sokoloff, and colleagues (2014) have developed outreach tools in collaboration with community organizations that are based on multidimensional assessments to ensure that their interventions are linguistically and culturally appropriate. Multi-faceted, individualized interventions have been found to be more effective than a ‘one size fits all’ approach (Pinquart & Sörensen, 2006).
Based on these and other results, we recommend a two-pronged intervention model when working with minority dementia caregivers: a generic intervention to reduce caregiver stress along with culturally targeted interventions tailored to a family’s language, food preferences, religious practices, gender norms, and other values. A two-pronged intervention is consistent with Knight and Sayegh’s updated sociocultural stress and coping model, which includes a common core and a culturally tailored model. The common core focuses on generic stressors, typically resulting from behavior problems that many dementia caregivers’ experience regardless of their ethnicity. Thus, an intervention focusing on the reduction of these caregivers’ stress would alleviate some burdens involved with dementia caregiving. However, at the same time practitioners who overlook cultural context might struggle more to establish trust and rapport. Our conclusions are in line with other scholars (Sun, 2014) who have studied diverse ethnic caregivers of persons with dementia. They also are consistent with researchers (e.g., Boughtwood et al., 2011) who argue for the employment of more bilingual/bicultural workers to provide dementia services. Despite these recommendations, Nápoles and colleagues (2010) found few studies in the literature that described ethnic tailoring of interventions.
Dementia caregivers from diverse ethnic backgrounds more often live in poverty than white caregivers, and minority groups living in the United States do not have the financial safety cushions provided in other countries (Gelman, Tompkins, & Ihara, 2014). The financial stresses mentioned by the dementia caregivers in this investigation presumably would be less in countries that offer universal health care, and in particular, long-term care. For example, Canada’s predominantly publicly financed health care system subsidizes prescription drugs, home care, and long-term care, as part of the Compassionate Care Benefit. The Employment Insurance Programme also provides employed caregivers with 26 weeks of paid leave and tax credits (Prince, Comas-Herrera, Knapp, Guerchet, & Karagiannidou, 2016).
Many professional associations have revised their priorities to strengthen their outreach to ethnically diverse families that are caring for persons with dementia. For example, in a report that was recently published by the National Association of Social Workers, entitled Standards and Indicators for Cultural Competence in Social Work Practice (NASW, 2015), the authors recognized the importance of “language and communication” in addressing the increasingly diverse American population. They recommend conceptualizing culture as being inclusive beyond race and ethnicity and incorporating sexual orientation, gender identity, and religious identity or spirituality.
In sum, we add to current knowledge about cultural influences on dementia caregiving by seeking to uncover the variability inherent in caregiving among diverse ethnic populations; by focusing on similarities as well as differences across subgroups; and by considering the intersection between culture and use of services. However, we need studies with larger samples that allow investigators to reach theoretical saturation, which would require open-ended sampling until redundancy was reached. We also need in-depth explorations of within-group variations. In addition, given selection biases underlying recruitment, we are unable to generalize from this study. We recommend that future researchers follow-up on the themes identified in this investigation including more spousal caregivers from other countries. We also need quantitative methods that include hypotheses to test the validity of a two-factor model. However, we concur with Knight and Sayegh that well-designed qualitative studies offer a more nuanced understanding of ethnically diverse caregivers’ experiences. Cross-national comparisons of dementia caregivers in different health and service-delivery systems would illuminate the applicability of this framework in a broader context.
Despite these limitations, we were able to reach previously understudied dementia caregivers by using an ethnocultural design that included a team of diverse bilingual researchers. In addition, we successfully recruited these participants by offering incentives, matching interviewers and participants on demographic characteristics, and by maintaining strong ties and personal contacts with key informants and indigenous community organizations. We shed light on the complexities inherent in dementia caregiving among ethnically diverse families by framing this investigation within the context of the updated sociocultural stress and coping model. Finally, we uncovered sources of stress, such as language barriers and knowledge about dementia, that have exacerbated these caregivers’ burdens and have contributed to their lack of involvement in community services. It is hoped that our findings will lead to linguistically and culturally appropriate interventions that will reduce these caregivers’ stress and provide them with the supports they need. Acknowledging diversity among caregivers is a critical piece of understanding dementia caregiving as the number of foreign-born aged 65, and older continues to increase around the world.
Footnotes
Acknowledgements
We thank members of our team and the participants of this study for their many contributions.