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Am J Alzheimers Dis Other Demen. Author manuscript; available in PMC Feb 25, 2013.
Published in final edited form as:
PMCID: PMC3581148
NIHMSID: NIHMS434482
Developing Culturally Sensitive Dementia Caregiver Interventions: Are We There Yet?
Anna M. Nápoles, PhD, MPH,1 Letha Chadiha, PhD,2 Rani Eversley, PhD,3 and Gina Moreno-John, MD1
1Center for Aging in Diverse Communities, Division of General Internal Medicine, Department of Medicine, University of California San Francisco (UCSF), San Francisco, CA
2School of Social Work, University of Michigan, Ann Arbor, MI
3Department of Social and Behavioral Sciences, UCSF, San Francisco, CA
Letha Chadiha: lethac/at/umich.edu; Rani Eversley: Rani.Eversley/at/ucsf.edu; Gina Moreno-John: ginam/at/medicine.ucsf.edu
CORRESPONDING AUTHOR: Anna M. Nápoles, PhD, MPH, University of California San Francisco, 3333 California Street, Suite 335, San Francisco, CA 94118-1944, USA, Phone: 415 476-6290, Fax: 415 502-8291, anapoles/at/ucsf.edu
Despite evidence of ethnic differences in family caregivers’ experiences, the extent to which caregiver interventions are culturally tailored to address these differences is unknown. A systematic review of literature published from 1980–2009 identified: differences in caregiving experiences of African American, Latino and Chinese American caregivers; psychosocial support interventions in these groups; and cultural tailoring of interventions. Ethnic differences in caregiving occurred at multiple levels (intrapersonal, interpersonal, environmental) and in multiple domains (psychosocial health, life satisfaction, caregiving appraisals, spirituality, coping, self-efficacy, physical functioning, social support, filial responsibility, familism, views toward elders, use of formal services and health care). Only 18 of 47 intervention articles reported outcomes by caregiver ethnicity. Only 11 reported cultural tailoring; 8 were from the REACH initiative. Cultural tailoring addressed: familism, language, literacy, protecting elders, and logistical barriers. Results suggest that more caregiver intervention studies evaluating systematically the benefits of cultural tailoring are needed.
Keywords: cultural sensitivity, cultural competence, dementia caregivers, Latinos, African Americans, Chinese Americans, support interventions
Older segments of the U.S. population are not only growing in size, they are also becoming more ethnically diverse. In 2006, 81 percent of the U.S. older population (aged 65+) was non-Latino White, 9 percent was African American, 3 percent was Asian American, and 6 percent was Latino. By 2050, projections indicate that the composition of the older population will be 61% non-Latino White, 18 percent Latino, 12 percent African American, and 8 percent Asian American, highlighting the increasing numbers of older ethnic minorities. 1
Consistent with these demographic changes, we are also observing a growing number of older persons with Alzheimer’s disease (AD) and related dementias. 2 Some ethnic minority groups bear a disproportionately greater burden associated with AD and related dementias. Studies have found higher prevalence and incidence rates of dementias and AD among African Americans and Latinos, while Asian Americans had comparable rates to Whites. 3
Compared to Whites, rates of institutionalization of minority elders with dementia tend to be lower and reliance on family caregivers seems to be greater. 4, 5 In general, family caregivers who report high stress and strain are at high risk of psychological and physical morbidity due to the challenges of caring for older persons who may have both poor cognitive and physical functioning. 69 Maintaining the health of family caregivers will become more important as gaps in the availability of formal supportive services become more acute and widespread. Psychosocial support services, especially those that focus on caregiver coping skills training, are promising interventions for reducing caregiver burden and depression. 1013 Reducing caregiver stress delays and reduces nursing home admissions as well. 14, 15
Substantial evidence exists that the caregiving experiences of ethnic minority caregivers in the U.S. differ significantly from those of White caregivers. 16 Appraisals of caregiving burden and depression tend to vary by ethnicity. 7 African American caregivers tend to report lower levels of caregiver burden and depression than White caregivers, while Latino and Asian American caregivers report higher levels of depression. 7, 17 Cultural explanations for these ethnic differences in caregiving experiences have pinpointed differences in familism, ethnic group identity, levels of acculturation, and related cultural values and beliefs, such as reciprocity, sense of duty, and God’s will. 1823
Conceptually, an ethnic group is one having a shared heritage, ancestry, religion, language or common culture. 16 A consensual definition of culture found in the literature consists of shared group behaviors and norms, such as traditions, values, beliefs, attitudes, symbols, language, religion, and social roles of an ethnic group.16, 20, 46, 100 Cultural tailoring has been defined as “the development of interventions, strategies, messages and materials to conform with specific cultural characteristics.” 24 Cultural tailoring can include incorporation of themes, messages and graphics found to be consistent with the values and beliefs shared by subgroups, e.g., African Americans. 24
Despite substantial evidence of ethnic, racial and cultural variations in caregiving, little research has addressed the extent to which psychosocial interventions for family caregivers are effective and culturally appropriate for specific ethnic groups. 6 Because of variability in the needs of ethnically diverse caregivers, some degree of tailoring to individuals that considers their cultural context is warranted. 2527 Yet optimal methods for culturally tailoring psychosocial interventions for ethnic minority caregivers are not well understood. In this study we addressed the following research question: to what extent does current psychosocial support intervention research involving African American, Latino, and Chinese American family caregivers of persons with dementia incorporate what we know about ethnic differences in caregiving? We sought to examine the degree to which caregiver psychosocial interventions targeting these ethnic groups, culturally tailor the interventions. Operationally, for the purposes of this review, we defined cultural tailoring as the development or adaptation of a caregiver intervention with attention to ethnicity-specific factors identified in the literature, that is, ethnic group specific evidence-based differences in caregiving.
We conducted two systematic literature reviews. In the first systematic review we identified ethnic group differences in the caregiving experiences of ethnically diverse family caregivers of people with dementia. In the second review, we examined the extent to which psychosocial support interventions for ethnically diverse caregivers incorporate evidence of ethnicity-specific differences in dementia caregiving in designing their interventions.
We focused these reviews on African American, Latino, and Chinese American caregivers because these groups represent the largest ethnic minority groups in the United States. Because 90% of Latinos in the U.S. are represented by three national origin subgroups, most of whom are of Mexican origin (67%), and they share the same language of origin, we represent data for Latinos as a whole although we acknowledge that these data may mask subgroup differences. 28 Asian Americans are very heterogeneous in terms of language, nativity, culture, national origins, and time period of migration to the United States. 29 Since Chinese Americans represent the largest Asian American group in the U.S. (21% of Asian Americans), 30 we reviewed any studies that focused on Chinese Americans; however, we also included studies that reported data on Asian Americans as a whole since there were so few studies conducted among Chinese Americans compared to African Americans and Latinos.
Systematic review to identify ethnic differences in caregiving
First, we conducted a systematic literature review to identify ethnic differences in the dementia caregiving experiences of African American, Latino, and Chinese/Asian American family caregivers. We used a broad systematic review approach to allow us to capture findings from a breadth of studies including those that were qualitative in nature. Systematic reviews have been criticized for the use of reductionist and standardized models that fail to acknowledge individual variability and the influence of contextual variables. 31 Including qualitative data in reviews helps address these limitations, which may be especially important in a review such as this one that seeks to examine ethnic differences in caregiver experiences.
Inclusion criteria for this part of the study were: articles published from 1980 through April 2009, in English, included human data specific to African American, Latino, Chinese/Asian American family caregivers of people with dementia, and reported on physical and mental health of caregivers. As previously mentioned, since there were so few studies of Chinese Americans and many studies did not distinguish between Asian American subgroups, we included studies reporting on Chinese or Asian Americans.
All abstracts were reviewed to identify articles that indicated that one of the targeted ethnic groups differed in a statistically significant way from another ethnic group on the major outcome variables. We also included studies of single ethnic groups that demonstrated a descriptive within group finding with respect to the caregiver experience that was corroborated in a multiple ethnic group study as being unique to that group. Review articles that examined ethnic differences in caregiving were also included. The full articles were pulled to identify significant ethnic differences not reported in the abstracts. The goal was to be as inclusive as possible to generate a rich framework of cultural factors that influence family caregiving and that vary across racial/ethnic groups. Multi-ethnic group studies that found no differences by race or ethnicity were not included.
Conceptually, these ethnicity-specific factors were grouped by the level at which they operate, namely, at the intrapersonal (e.g., self-efficacy; coping strategies), interpersonal (e.g., relationship between caregiver and care recipient), and environmental (use of formal supportive services) levels. We grouped these factors by the level at which they operate to facilitate the identification of potential interventions and their targeted scope.
Systematic review to assess nature and extent of cultural tailoring
For the second systematic review, using the total search results obtained in the first review, we separated out those studies that consisted of caregiver support interventions conducted in one or more of the targeted ethnic groups. The systematic review of interventions assessed the extent to which the evidence-based ethnicity-specific factors identified in the first review (ethnic group specific differences in the experiences of caregivers) were incorporated into intervention studies targeting African American, Latino, and Chinese American family caregivers of persons with dementia. The extent to which these empirically derived cultural factors were incorporated in the design and delivery of those interventions was viewed as a global indicator of their cultural competence.
Inclusion criteria for the second systematic review were: psychosocial support intervention for family caregivers of people with dementia, conducted in the U.S., and reported stratified caregiver health outcomes for African Americans, Latinos, or Chinese Americans, or overall results if they tested for and found no ethnic differences. We did not restrict these studies to controlled trials as we wanted to include preliminary tests of interventions (pilot or feasibility studies).
Search method
We searched the following electronic data bases: CINAHL (Cumulative Index to Nursing and Allied Health Literature), PsychINFO, PubMed, and Sociological Abstracts. Searches were performed using the following keywords: African American OR Black OR Hispanic American OR Hispanic OR Latino OR Asian Americans OR Chinese American OR Chinese OR ethnic group OR minority group AND caregiver AND dementia AND quality of life OR health status OR physiological OR mental health OR depression OR anxiety OR stress OR personal satisfaction OR self-efficacy AND 1980:2009. Searches were not restricted by study design to ensure the inclusion of qualitative and quantitative studies. Additionally, the reference lists of all relevant studies and review articles were reviewed for other potentially relevant articles.
Selection and data extraction methods
Selection of the relevant abstracts and articles was performed by two independent reviewers. Disagreements on the eligibility of articles occurred in only a few cases and were discussed until consensus was reached. Two reviewers independently abstracted the published articles.
For the review of ethnicity-specific cultural factors, a data abstraction form was used to collect the following study characteristics: 1) the citation; 2) the ethnic groups included in the study; 3) the sample sizes by ethnicity; and 4) a narrative description of any differences across ethnic groups or within a cultural group. For the review of the cultural tailoring of behavioral interventions, a data abstraction form was used to obtain the following: 1) the citation; 2) study design; 3) sample and setting; 4) description of the intervention and control conditions; 5) outcome measures; 6) cultural adaptations that were made for the group(s); and 7) the main findings.
The combined searches yielded a total of 1,438 unique citations. Of these, from the abstracts we identified 78 studies (some had multiple ethnic groups) that reported significant differences in the caregiving experiences of African Americans, Latinos, or Chinese/Asian Americans and 47 studies of psychosocial support interventions for family caregivers of people with dementia that included African Americans, Latinos or Chinese Americans.
Systematic review of ethnic differences in caregiving
Table 1 describes the domains and subdomains of ethnicity-specific factors for which ethnic differences were found and the number of studies by domain and ethnic group. The majority of these studies were conducted in African Americans (55 studies), followed by Latinos (33), and Chinese or Asian Americans (20).
Table 1
Table 1
Ethnic Differences in Family Caregiving of Persons with Dementia by Level, Domain, and Ethnic Group, 1980–2009.
Ethnic differences in caregiving were observed at multiple levels (intrapersonal, interpersonal, and environmental) and across multiple domains (psychosocial health, life satisfaction, appraisals of caregiving, spirituality, coping strategies, self-efficacy, physical functioning, social support, filial responsibility, familism, conceptualizations of care recipient’s dementia and aging, use of formal support services, and use of health care). Most studies involved concepts that appear to operate at the individual or intrapersonal level, followed by studies of interpersonal concepts relating to relationships between caregivers, care recipients, and others. Fewer studies addressed environmental level factors, such as access and use of formal support and health care services. The domains that were most frequently studied were appraisals of caregiving (33 studies), spirituality (20), psychosocial health (20), filial responsibility (17), familism (14), and use of formal support services (13).
The most frequently documented cultural differences for African American caregivers were better psychosocial health, more positive appraisals of caregiving, and greater spirituality or use of prayer than a comparison group, which most often consisted of White caregivers. Although reported less frequently, African Americans also tended to report more social support, stronger beliefs about filial responsibility, a higher value placed on extended family networks, and a greater aversion to institutionalization of relatives.
For Latinos, the most frequently occurring differences were worse psychosocial health, more positive appraisals of coping, greater spirituality, stronger beliefs about filial responsibility and familism, and a greater aversion to institutionalization of relatives.
Among Asian Americans, although fewer studies were available, the most commonly found differences related to strong beliefs about filial responsibility and misconceptions or stigmatization related to dementia.
Systematic review of cultural tailoring of psychosocial support interventions
We identified 47 studies that involved psychosocial support interventions for family caregivers. Only 18 of the 47 psychosocial intervention studies met inclusion criteria for the study; the rest did not report outcomes stratified by caregiver ethnicity (Table 2). Ten studies included African Americans, 11 included Latinos, and only one included Chinese Americans. Of the 18 intervention studies meeting criteria, only 11 considered cultural factors in their design; 8 of the 11 that addressed cultural tailoring were from one multi-site research initiative, the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) program. Cultural tailoring addressed: familism, language, bilingual-bicultural staff, literacy, need for advocacy, protecting elders, and logistical barriers. There were too few studies to allow for conclusive interpretations of the association of cultural tailoring of interventions and their effectiveness for specific ethnic groups.
Table 2
Table 2
Family Caregiver Psychosocial Intervention Studies among African Americans, Latinos, and Chinese Americans: Study Characteristics, Cultural Tailoring, and Main Findings, 1980–2009.
Among African Americans, several studies using multicomponent skills training or social support interventions demonstrated improvements in terms of decreased burden, 3234 decreased upset with memory related problems of the care recipient, 26 better affect, 26 more positive ratings of caregiving, 35 greater happiness, 36 and greater self-efficacy for providing assistance with Instrumental Activities of Daily Living (IADLs). 37 Most of these studies described no or little ethnic tailoring of interventions.
Among Latinos, several skills training or psychoeducational interventions demonstrated decreased burden, 32 decreased depression, 38, 26, 3942 decreased negative coping, 40 decreased stress, 41 decreased behavioral bother, 41 better anger control, 39 and better self-efficacy. 42 Most of these interventions were associated with the REACH studies, some of which involved substantial cultural tailoring.
The one randomized trial in Chinese Americans involved an in-home behavioral management intervention that demonstrated decreased depression and behavioral bother. 43 This study was sensitive to several cultural factors among Chinese Americans including the need to provide services in the home and consideration of language differences.
In the present study, we sought to describe ethnic differences in caregiving and the extent to which caregiver interventions were culturally tailored to take into account these differences. We found numerous differences among ethnic minority dementia caregivers in outcomes of caregiving and cultural factors that merit further investigation as potential mediators and moderators of those outcomes. Despite these differences, most dementia caregiver intervention studies that included ethnic minority members failed to report their findings stratified by race/ethnicity. Even fewer studies reported tailoring their interventions for a particular cultural or ethnic group. The lack of attention to cultural tailoring of dementia caregiver interventions is concerning, given the growing number of ethnically diverse older adults in this country.
Consistent with previous reviews, our review found numerous racial/ethnic differences in the experiences of family caregivers of people with dementia. 4, 5, 7, 17 Such differences can be linked to a variety of cultural, socioeconomic, and language factors. To better inform advances in the design of psychosocial support interventions for ethnically diverse caregivers, theory-based multidimensional models of caregiver experiences and outcomes that take into account the roles of culture, ethnicity, and structural inequality are needed. 4446 A comprehensive model of caregiver outcomes must also include positive outcomes (e.g., mastery, gratification). Paradoxically, although African American and Latino caregivers may experience more financial and resource constraints in meeting their caregiver demands, they generally report less caregiver stress, burden, and depression than White caregivers. 4, 17, 20, 47, 48 Possible mechanisms include appraisal of caregiving as less stressful, greater self-efficacy for caregiving, 17, 47 and greater use of religious coping. 49 These positive coping strategies could be tested in future intervention studies that aim to preserve the well-being of minority caregivers.
Pinquart and Sörensen offer a promising conceptual model that explains ethnic differences in caregiving in terms of differences in personal resources, stressors, background characteristics (including individual level income), and baseline differences in physical and mental health. 7 Investigators from the REACH program also offer a promising model of the sociocultural context of caregiving that includes care recipient characteristics, caregiver strengths and vulnerabilities, the physical environment, familial and social support networks, and their effects on physical and mental health and functioning. 50 The variables in our framework of ethnic differences in caregiving experiences can be grouped according to these models to suggest potential mediators and moderators that may help explain ethnic differences in health outcomes. For example, evidence suggests that African American dementia caregivers experience better mental health and more positive appraisals of caregiving compared to other ethnic minority groups. The use of religious coping strategies and informal support partially explain this ethnic advantage. 49
The complexity of models that will be needed for both within and across ethnic group studies is becoming increasingly obvious. For example, Dilworth-Anderson and colleagues found that among African Americans, high caregiving mastery was associated with poorer psychosocial health, possibly reflecting a cultural script referred to as “John Henryism” or prolonged high-effort in stressful situations. 23 They also found a curvilinear relationship between scores on a cultural justification for caregiving scale and health such that a very weak and very strong culturally-based rationale for caregiving was associated with poorer psychosocial health. They speculated that those with very high cultural rationale for caregiving were doing so primarily out of a sense of obligation and that those with low cultural justifications for caregiving were providing care out of necessity perhaps because no one else was available. Models also need to test for interaction effects of ethnicity and moderating or treatment variables. For example, the effects of race/ethnicity on strain may depend on the extent of resources available (e.g., social support, spirituality) such that when resources are low, all ethnic groups experience equal levels of strain. 35 A significant interaction effect of ethnicity and treatment on psychosocial health outcomes was found in the REACH studies such that there were significantly greater improvements on five domains for Latinos and Whites in the intervention group compared to controls, but for African Americans improvements depended upon the relationship between caregivers and care-recipients. 32
Psychosocial support interventions to promote the health of ethnically diverse dementia caregivers must address cultural attitudes, such as distrust, perceived discrimination, reticence toward having strangers in the home, and preferences for taking care of elders without support from those outside the family. However, in our review, we found that these factors are seldom addressed in intervention studies. Asian American caregivers frequently report feeling too proud to accept services or not wanting outsiders in the home. 51 Among Whites and Latinos, use of supportive home care services was related to perceived need for and awareness of such services. 21 These studies along with the effectiveness of psychoeducational approaches cited in our review suggest that providing information and addressing barriers to supportive home care services is a promising strategy although as the aging population increases the availability of these services may become scarcer. 52
The extent of evidence on ethnic differences in caregiving experiences, 2527 along with evidence from the only multi-site intervention study focused on the health of ethnically diverse dementia caregivers, the REACH program, support cultural tailoring of psychosocial support interventions for family caregivers. The REACH studies demonstrated the effectiveness of in-home, telephone, and small group support on depression, quality of life, and adaptive coping strategies of ethnically diverse caregivers. 32, 40 Populations studied include African Americans, Chinese Americans and Latinos. 40, 43 The REACH program stands out among the literature because of the rigorous, comprehensive methods used to develop and empirically test caregiver support interventions among various ethnic groups. The results of our comprehensive review point to the need for rigorously testing the effectiveness of culturally tailored interventions and the specific mechanisms through which they affect health outcomes among specific ethnic subgroups.
In conclusion, although the literature on minority caregivers is growing, randomized trials of interventions to promote their physical and mental health are limited. What is clear from the evidence is that programs, such as REACH, which take into account the needs and cultural nuances of ethnically diverse groups of caregivers can effectively improve coping skills, as well as quality of life. More research is needed that addresses socioeconomic and language barriers, and considers how to integrate religious coping for some caregiver groups. 20 Caregiving places family members at increased risk of adverse mental and physical outcomes. 53 Minority caregivers may be at particularly high risk because their care recipients have a higher prevalence of dementia-related behaviors 54 and greater physical and functional impairment, 7 and they are less likely than White caregivers to utilize formal support services. With more evidence regarding factors that are associated with improved health outcomes of minority caregivers, we can develop and better target interventions to improve their health. Our review focuses attention on the importance of this work to prepare to meet the needs of a growing U.S. population of ethnically diverse older adults and their caregivers.
Acknowledgments
This research was supported by the Center for Personal Assistance Services at the University of California San Francisco with funding from the National Institute on Disability and Rehabilitation Research (grant no. H133B080002) and by grant no. P30-AG15272 from the Resource Centers for Minority Aging Research program of the National Institute on Aging, the National Institute of Nursing Research, and the National Center on Minority Health and Health Disparities.
Footnotes
Disclosure: The authors have reported no conflicts of interest.
This work was presented as a poster at the Gerontological Society of America annual scientific meeting held on November 18–22, 2009, in Atlanta, GA.
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