Racial, Ethnic, and Cultural Differences in Dementia Caregiving: Review and Analysis 1

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1 Copyright 1997 by The Cerontological Society of America The Cerontologist Vol. 37, No. 3, This study provides a review and analysis of the empirical research published since 1985 that has examined the impact of race, culture, and/or ethnicity on the dementia caregiving experience. Ten of the 12 studies included in the review focused on comparisons between Black and White caregivers; one examined differences between Black and Hispanic caregivers, and one focused on White and Hispanic caregivers. Compared to White caregivers, non-white caregivers: a) were less likely to be a spouse and more likely to be an adult child, friend, or other family member, b) reported lower levels of caregiver stress, burden, and depression, c) endorsed more strongly held beliefs about filial support, and d) were more likely to use prayer, faith, or religion as coping mechanisms. Strategies for advancing research in this area are discussed. Key Words: Alzheimer's disease, Minority, African American, Hispanic, Black Caregivers Racial, Ethnic, and Cultural Differences in Dementia Caregiving: Review and Analysis 1 Cathleen M Connell, PhD 2 and Gloria D. Gibson, PhD 3 Several refinements have marked the rapidly expanding dementia caregiving literature over the past several years, including reliance on larger and more representative samples, standardized measures, sophisticated sampling strategies, longitudinal designs, and multivariate analytic strategies (Schulz, O'Brien, Bookwala, & Fleissner, 1995). Much of this research, however, has been restricted to the majority population and does not reflect the racial, cultural, and ethnic diversity among caregivers (Advisory Panel on Alzheimer's Disease, 1992; Dilworth-Anderson & Anderson, 1994; Hines-Martin, 1992; Kuhlman, Wilson, Hutchinson, & Wallhagen, 1991; Valle, 1987). For example, in a recent review of 41 dementia caregiving studies (Schulz et al., 1995), the racial/ethnic composition of the sample is described for only four studies. The implicit assumption is that the sample used in the remaining 37 studies is predominantly or entirely White. The purpose of this study is to provide a review and analysis of those published empirical studies that have examined the effect of race, culture, and/or ethnicity on the dementia caregiving experience. 'The authors gratefully acknowledge Ruth Dunkle, Shelia Feld, Mary Gallant, Sara Holmes, Margaret La Pietra, and two anonymous reviewers for their helpful comments on an earlier draft. Cathleen M Connell was supported by a grant from the National Institute on Aging to the Michigan Alzheimer's Disease Research Center (NIA P50-AC08671). Gloria D. Gibson was supported by a National Institute on Aging Postdoctoral Fellowship (T32-AG ) from the School of Social Work at the University of Michigan. 2 Address correspondence to Cathleen M Connell, PhD, Associate Professor, Department of Health Behavior and Health Education, School of Public Health; Director, Education and Information Transfer Core, Michigan Alzheimer's Disease Research Center, 300 North Ingalls Building, Room 3D03, University of Michigan, Ann Arbor, Ml 'School of Hygiene and Public Health, Johns Hopkins University, Baltimore, MD; National Institute on Aging Postdoctoral Research Fellow, School of Social Work, University of Michigan, Ann Arbor, Ml. Method Search Strategy Included in this review are published reports of research that examine differences in the dementia caregiving experience between subgroups defined by race, culture, or ethnicity. Articles were excluded if they relied exclusively on case reports (e.g., Dungee-Anderson & Beckett, 1992) or included only a limited focus on empirical work in an article or chapter that addressed issues related to the review (i.e., Cox, 1995b; Mintzer, Rubert, & Herman, 1994). The search strategy also excludes articles that focus on a single group defined by race, culture, or ethnicity. Examples include studies of the cultural determinants of burden in South Korea (Choi, 1993), stages of dementia caregiving in Japan (Kobayashi, Yuasa, & Noguchi, 1995), caring for demented family members in Hong Kong (Chu, 1991), the impact of ethnicity and cultural values on the experiences of Hispanic caregivers (Cox & Monk, 1993; Henderson & Cutierrez-Mayka, 1992), coping strategies used by Black caregivers (Segall & Wykle, ), and the costs and rewards of providing care to a Black family member with dementia (Picot, 1995). Finally, studies that focus on nondementia caregiving (e.g., Fredman, Daly, & Lazur, 1995) and those that have not been peer reviewed, such as dissertations, were excluded from the review. The following databases were reviewed: Ageline, Psychlnfo, Social Science Citation Index, SocioFile, MEDLINE, and Wilson Indexes to Journal Articles. Search terms included: African-Americans, Alzheimer's disease, Blacks, burden, caregivers, caregiving, Caucasians, coping strategies, dementia, demen- Vol. 37, No. 3,

2 tia caregivers, dementia caregiving, ethnic minorities, mental health, minority caregiving, minorities, physical health, racial differences, social support, stress, strain, and Whites. Articles were limited to those published in English during the last decade ( ). To supplement the search, reference lists were obtained from the Alzheimer's Association, the Benjamin B. Green-Field National Alzheimer's Library and Resource Center, and the National Resource Center on Minority Aging Populations. Of the more than 500 articles identified, only 12 met the criteria for inclusion in the review (two articles are based on the same sample; Cox, 1993, 1995a). Because these articles were identified by a selected search strategy, some relevant studies may have been excluded. Articles are presented in chronological order by year of publication. Within the year, articles are presented in alphabetical order. Results Table 1 provides a detailed description of the 11 samples upon which the 12 articles are based. The following information is presented (when available): total and subsample sizes; mean or median age, percentage female, and percentages of adult child, spouse, or other relative caregivers. Morycz, Malloy, Bozich, and Martz (1987) examined the differential impact of caregiving strain among Black and White caregivers of functionally disabled older adults, half of whom (46%) had a dementing illness. The sample included 715 White and 95 Black caregivers (see Table 1). Data were obtained from the medical charts of patients seen at a community-based geriatric assessment center in Pittsburgh, Pennsylvania. In addition to the clinical data, several caregiver variables were assessed: education, relationship to patient, and a family burden instrument (Morycz, 1985). Although the authors reported that overall levels of burden did not differ between Black and White caregivers, the predictors of burden varied between the two groups. Among Black caregivers, being unmarried and the care recipient's level of impairment in physical activities of daily living (e.g., dressing) predicted burden. For White caregivers, predictors of burden included the care recipient's diagnosis of a dementing illness and impairment in instrumental activities of daily living (ladls; e.g., preparing meals). The authors concluded that there were few racial differences in the experience of burden or desire to institutionalize a nondemented family member. Differences emerged, however, when focusing on demented relatives. White caregivers of demented relatives reported higher levels of burden and were much more likely to institutionalize their relative than Black caregivers. Table 1. Sample Descriptions of Empirical Studies that have Examined Racial, Ethnic, or Cultural Differences in the Dementia Caregiving Experience Authors Morycz et al., 1987 Cox & Monk, 1990 Wood & Parham, 1990 Wykle & Segall, 1991 Hinrichsen & Ramirez, 1992 Lawton et al., 1992 Macera et al., 1992 Mintzeretal., 1992 Cox, 1993,1995a Haley et al., 1995 Miller etal., 1995 Sample Description N = 810; 95 Black (20% spouse, 27% adult child) and 715 White (18% spouse, 24% adult child) caregivers of functionally disabled older adults N = 50; 31 Black (median age 66, 77% female; 26% spouse, 32% daughters) and 19 Hispanic (median age 61, 74% female, 32% spouse, 26% daughters) family caregivers of older relatives reported to have a dementing illness N = 75; 26 (10 rural & 26 urban) Black and 49 (23 rural & 26 urban) White female primary caregivers of relatives diagnosed with Alzheimer's disease; mean age of entire sample, 59.6; 37% spouse; 26% adult child; 37% other relative N = 40; 20 Black (median age 57, 60% daughters or daughters-in-law) and 20 White (median age 64, 65% are daughters or daughters-in-law) primary caregivers (90% female) residing with a family member 60 years of age or older diagnosed with a dementing illness N = 152; 33 Black (mean age 52.8, 79% female, 73% adult child, 15% spouse) and 119 White (mean age 61.5, 68% female, 54% adult child, 42% spouse) primary caregivers of patients with a diagnosed dementing illness N = 629; 157 Black (mean age 59.1, 83% female, 42% adult child, 27% spouse) and 472 White (mean age 60.1, 78% female, 37% adult child, 51% spouse) primary caregivers of people 65 and over diagnosed with a dementing illness N = 82; 20 Black (95% female, 45% spouse) and 62 White (81% female, 57% spouse) primary family caregivers of relatives with a diagnosed dementing illness; mean age of entire sample, 62 N = 28; 13 Hispanic (mean age 45.2) and 15 White (mean age 49.2) daughters serving as primary caregivers for mothers with Alzheimer's disease N = 164; 76 Black (mean age 53, 85% female, 18% spouse, 49% daughter, 33% other relationship) and 88 White (mean age 56, 84% female, 36% spouse, 50% daughter, 14% other relationship) primary caregivers of relatives with a dementing illness N = 350; 70 Black (mean, age 54.1, 71% female, 29% spouse, 54% adult child, 17% other relationship) and 105 White (mean age 61.8, 62% female, 51% spouse, 39% adult child, 10% other relationship) primary caregivers of family members diagnosed with a dementing illness and 70 Black (mean age 50.8, 70% female) and 105 White (mean age 60.1, 65% female) noncaregivers N = 260; 77 Black (71% female) and 138 White (59% female) spouse caregivers who reside with a person over the age of 60 diagnosed with a dementing illness; mean age of entire sample, The Gerontologist

3 Cox and Monk (1990) examined the use of formal and informal supports, attitudes about caregiving, and caregiver health among a convenience sample of 31 Black and 19 Hispanic caregivers in New York and Baltimore (see Table 1). Participants were recruited from hospital clinics, senior centers, community organizations, support groups, and day care centers. Over two thirds of the participants were providing care for family members diagnosed with Alzheimer's disease (AD). Structured interviews were used to collect data at baseline and at a fourto six-month follow-up. Commonly used measures of depression (Center for Epidemiological Studies Depression Scale, CES-D; Radloff, 1977), caregiver burden (Burden Interview; Zarit, Todd, & Zarit, 1986), and the care recipient's impairment and activities of daily living (Memory/Behavior Checklist; Zarit & Zarit, 1982) were included in the interview protocol. In addition, the survey included items that assessed a caregiver's physical health, beliefs about filial responsibility, and perceptions and use of informal and formal services. Demographic profiles of Black and Hispanic caregivers were similar in terms of age, gender, income, education, employment, and marital status. Hispanic caregivers were much more likely to be Catholic while Black caregivers were predominantly Protestant. No significant between-group differences in caregiver's health background characteristics were discovered, including the number of annual doctor visits, self-rated physical health, or self-reported changes in medical conditions or overall health. The majority of the Hispanic and Black caregivers reported the availability of a confidant and awareness of but limited use of support services. The two groups were similar in terms of burden scores and the endorsement of strong feelings of filial obligation. The Hispanic caregivers reported much higher levels of depression than the Black caregivers. The authors suggest that ethnicity influences dementia caregiving and cite the strong informal networks among Black and Hispanic families and the adherence to norms of filial support toward older adults as evidence. Wood and Parham (1990) examined stress, social support patterns, and coping strategies among 75 women serving as primary caregivers for family members diagnosed with AD. Participants were selected on the basis of race (Black/White) and residence (rural/urban; see Table 1). The final convenience sample included 26 Black and 49 White caregivers recruited from local chapters of the Alzheimer's Association, a hospital-based dementia clinic, and social service agencies in Virginia. Data were collected by personal interviews conducted in the participant's homes. To the extent possible, participants were matched with interviewers by race and residence. The interview protocol included the Relatives Stress Scale (Green, Smith, Gardener, & Timbury, 1982), behavioral and cognitive coping scales (Conway, 1985), and three social support subscales that assessed instrumental support, psychological support, and the availability of respite. The frequency of receiving each type of support from various providers was assessed, including family members, church members, ministers, friends, neighbors, God, and professionals. According to Wood and Parham (1990), caregiver stress was not significantly related to race, age, residence, education, income, or employment status. Household size, however, was negatively correlated with stress; caregivers in larger households reported less stress. Spouse caregivers reported the highest levels of stress, followed by adult children and "other family" caregivers. Household size and caregiver relationship status were, however, found to be related to race. Blacks reported larger households and were more likely to be caring for an extended family member than were Whites. Although few Black/White or rural/urban differences were reported in overall patterns of coping, differences were discovered for individual items. For example, White caregivers reported that they attended support groups more frequently than Black caregivers. White caregivers residing in rural areas were the least likely to use prayer as a coping strategy. Rural Black caregivers were the least likely to seek information about caregiving problems. Wood and Parham (1990) reported that Black caregivers received more instrumental support from family, friends, and ministers than White caregivers. Black caregivers reported that they relied upon extended kin, friends, and neighbors to perform functions that only close relatives were likely to perform in White families. Black caregivers reported receiving more instrumental support and respite from God than did White caregivers. The authors suggest that these results reflect ethnic and cultural differences in patterns of coping and support. Wykle and Segall (1991) conducted a comparative study of 20 Black and 20 White primary caregivers of family members with a diagnosed dementing illness to examine racial differences in caregiver stress, coping, and health (see Table 1). In-home interviews were conducted to assess coping, psychological distress (Langer Psychological Distress Scale; Langer, 1962), and caregiving hassles (Kinney & Stephens, 1989). Several demographic differences between the two samples were noted. White caregivers were more likely to be married, Catholic or Jewish; Black caregivers were predominantly Protestant. White caregivers reported higher household incomes and were more likely to be retired than Black caregivers. Patient impairment was reported to be similar between groups, with the majority characterized as moderately impaired. No differences were reported in caregiver health status, with the majority reporting that their overall health was good or excellent and that their physical health did not interfere with their ability to care for their family member. Black caregivers reported that their most difficult problem with providing care to their relative was a lack of temporary relief from the demands of caregiving. White caregivers reported that their most Vol. 37, No. 3,

4 difficult problem was handling negative emotions such as feelings of guilt. The second most frequently mentioned concern for both groups was managing their relative's difficult behavior (e.g., wandering). Few racial differences were reported in the types or intensity of caregiving hassles. When asked to identify "one special way that they have used to deal with caring for their relative," most Black caregivers (80%) reported that they used prayer, faith, or religion. For White caregivers, the most frequently mentioned response was acceptance of changes in their relative (25%), followed by receiving help from professionals (20%) and problem solving (15%). When asked what type of help they needed with their caregiving duties, Black caregivers were much more likely to mention relief/respite than White caregivers (55% vs 20%, respectively). Few Black/White differences were discovered in the caregiver's ability to provide care, physical health self-ratings, preference for home care, and the desire for more help with caregiving. Hinrichsen and Ramirez (1992) examined racial differences in the social and family context of caregiving, patterns of adaptation to caregiving, and the utilization of supportive services. A convenience sample of 33 Black and 119 White primary dementia caregivers of relatives with a diagnosed dementing illness were recruited from dementia evaluation clinics, physician offices, and a social service program in the New York area. Data were collected by in-depth interviews. Commonly used measures of caregiver burden (Burden Interview; Zarit & Zarit, 1988), psychiatric symptomatology (Symptom Checklist-90; Derogatis, 1977), caregiver desire to institutionalize a demented relative (Morycz, 1985), and coping (Health and Daily Living Form; Moos, Cronkite, Billings, & Finney, 1984; Dementia Management Strategies Scale; Scott, Wiegand, & Niederehe, 1984) were included in the interview protocol. Caregivers were also asked to indicate which of 17 supportive services were needed, which were being used, and to whom they turned to discuss dementia-related problems. Researchers found the caregivers more likely to be married, older, a spouse, and Catholic or Jewish than the Black caregivers. Black caregivers were predominantly Catholic and Protestant and usually an adult child, other relative, or friend. No differences in the demented relative's illness status were discovered between the two groups. Black and White caregivers were also similar on indices of appraisal, coping, professional help-seeking behavior, dementia management strategies, or psychiatric symptomatology. While Black caregivers reported lower levels of caregiving burden than White caregivers, they expressed a greater need for services and reported more unmet service needs. White caregivers reported receiving more services from family members than did Black caregivers. Additional analyses were conducted that controlled for significant between-group differences in demographic and background characteristics. Results indicated that, compared to White caregivers, Black caregivers reported less caregiver burden and less desire to institutionalize the demented relative. The authors concluded that, when background characteristics are controlled, Black and White caregivers are more similar than different in their adaptation to dementia caregiving. Lawton, Rajagopal, Brody, and Kleban (1992) examined the dynamics of caregiving among a large sample (472 Whites and 157 Blacks) of primary caregivers of adults with a diagnosed dementing illness that was recruited from support groups and social agencies and via the media in the Philadelphia area. The primary goal of the study was to assess the applicability of a model of caregiving to Black and White caregivers. Data were collected using structured interviews that were completed in the caregiver's home. Multi-item indices were employed that assessed caregivers' health, satisfaction, burden, and mastery; traditional caregiving ideology; the extent to which caregiving was perceived as an intrusion; positive affect (Bradburn, 1969), and depression (CES-D; Radloff, 1977). Compared to White caregivers, Black caregivers were more likely to be older, female, widowed, and to report lower income and educational attainment. A much greater percentage of the impaired older adults are cared for by their spouse compared to the Black care receivers, who were more likely to be cared for by siblings, other relatives, and friends (see Table 1). The vast majority of Black caregivers were Protestant, while the White caregivers were most likely to be Catholic. After accounting for socioeconomic and background differences, the authors reported that Black caregivers expressed a greater sense of traditional caregiving ideology and caregiving mastery and satisfaction than White caregivers. Black caregivers reported less subjective burden and depression and a lower perception of intrusion on their lives due to caregiving than White caregivers. Income affected caregiving differently for Black and White caregivers; higher income was associated with lower burden scores for White caregivers but not for Black caregivers. Results of the model-testing process indicated that the relationships among the constructs (representing the impaired person's symptoms, caregiver health, traditional caregiver ideology, help received from others, help given by caregiver, caregiving satisfaction, caregiving burden, positive affect, and depression) were similar for Black and White caregivers. Traditional caregiving ideology was unrelated to any model constructs for either Black or White caregivers. Macera et al. (1992) examined racial differences in perceived burden among 20 Black and 62 White primary caregivers recruited from support groups and a statewide Alzheimer's registry in South Carolina. All participants were caring for a relative with a diagnosed dementing illness. Data were collected through in-home interviews, designed to assess the caregivers' physical health, the care recipient's physical and cognitive impairment, the extent of care pro- 358 The Gerontologist

5 vided, and perceived burden associated with providing care. The burden scale was comprised of 15 items representing tasks for which the family member with dementia might require assistance (e.g., walking, cooking, bathing). The overall burden measure was comprised of four subscales: transportation, eating, toileting, and farming/yard work. In terms of demographic characteristics, the White caregivers were more likely to be a spouse (see Table 1) and to report higher incomes than the Black caregivers. No Black/White differences in self-rated physical health, having ever smoked cigarettes, the prevalence of hypertension, or having a family history of symptoms of dementia were discovered. Burden scores were found to be significantly higher for White than for Black caregivers. Among Whites, the caregiver's relationship to the demented relative was significantly related to burden; higher burden scores were reported among spouse caregivers than those categorized as "other relative" caregivers. Among Black caregivers, income was related to burden. Black caregivers who reported family incomes of $20,000 or more had significantly higher burden scores than those with family incomes below $20,000. Providing assistance with transportation, eating, and toileting was more stressful for White than for Black caregivers. The authors interpreted their findings as upholding the contention that Black and White caregivers differ in terms of the amount and correlates of caregiver burden. Mintzer et al. (1992) examined the caregiving experiences of 13 Cuban-American Hispanic and 15 White primary caregivers of a female relative who had been diagnosed with AD. The sample was selected from a group of daughters of older adults evaluated at two memory disorders clinics affiliated with academic medical centers in the Miami area. Data were collected via interviews to assess caregiver depression (CES-D), awareness and utilization of community-based services, and background and demographic characteristics (i.e., age, educational level, occupation, and income). Although White caregivers had completed more years of education, Hispanic and White caregivers did not otherwise differ in terms of demographic characteristics. Almost two thirds of the caregivers reported symptoms of depression and one third reported CES-D scores associated with clinically significant levels of depression (between-group differences were not significant). Awareness and utilization of services did not differ between the two groups. Over 75% of the Hispanic care recipients lived with their daughters, compared to 13% of the White care recipients (who were much more likely to reside in institutions). The authors interpret the finding that Hispanic caregivers were much more likely than White caregivers to live with their demented relative as indicative of strong cultural beliefs about family obligations and preferred living arrangements. Cox (1993) conducted a study to assess caregiver's use of services offered by the Alzheimer's Association in Baltimore, Maryland and Washington, DC. Telephone interviews were completed with 76 Black and 88 White primary dementia caregivers who had contacted the local chapters of the organization over a one-year period. Data were collected to assess relationship strain (Deimling & Bass, 1986), social activity restriction, depressive symptoms (i.e., nervousness, irritability, and feelings of sadness), caregiving competence (e.g., perceived confidence in the role), patient functioning and disruptive behavior, the availability of informal support, filial expectations of support, and the utilization of formal services. Compared to White caregivers, Black caregivers were less likely to be the care recipient's spouse and more likely to be an extended family member (e.g., grandchild, niece; see Table 1) and reported lower median incomes. Levels of relationship strain, social activity restriction, and depression did not differ between groups. Black and White caregivers were providing care for relatives with similar levels of impairment. Black caregivers reported receiving more informal help from relatives and friends than White caregivers, but expressed a greater need for additional help. Black caregivers also reported more strongly held attitudes of filial support for older adults and were more likely to have discussed their relative with clergy members and friends. Although the majority of caregivers reported being interested in a wide range of services offered by the Alzheimer's Association, utilization of services was low among both groups. In an expanded analysis of these data, Cox (1995a) reported that predictors of caregiver stress outcomes (i.e., depressive symptoms, relationship strain, and activity restriction) varied between the Black and White caregivers. In summarizing their findings, the authors suggested that patient functioning best predicted caregiver stress among White caregivers. Among Black caregivers, perceived competence was most highly related to caregiver stress outcomes. Haley et al. (1995) conducted a study to compare psychological, social, and health variables among Black and White caregivers and Black and White noncaregivers. Included in the study were 70 Black and 105 White primary caregivers of family members with a diagnosed dementing illness recruited from a university-affiliated memory disorders clinic and 70 Black and 105 White noncaregivers recruited from local churches and community-based information booths in the Birmingham, Alabama area. The final subsamples (defined by caregiving status and race) were selected from a larger group of participants to achieve comparability of caregivers and noncaregivers (within race) on age, income, education, gender, martial status, and family socioeconomic status. Data were collected by structured interviews and self-administered questionnaires. In addition to demographic and patient background variables, caregivers completed measures of depression (CES-D; Radloff, 1977), lift satisfaction (Wood, Wylie, & Sheafor, 1969), mental health outcomes (Brief Symptoms Inventory; Derogatis & Spencer, 1982), physi- Vol. 37, No. 3,

6 cal health (Cornell Medical Index; Brodman, Erdmann, Wolff, & Miskovitz, 1986), self-rated health, social support (Social Support Questionnaire, Short- Form-Revised; Sarason, Sarason, Shearin, & Pierce, 1987), and social activity (Multilevel Assessment Instrument; Lawton, Moss, Fulcomer, & Kleban, 1982). As expected, no demographic differences by race were discovered between caregivers and noncaregivers because of the effort invested in matching the groups. White caregivers, however, were significantly older, reported higher family socioeconomic status, and had completed more years of education than the Black caregivers. White caregivers were more likely to be married and to be caring for a spouse; Black caregivers were more likely to be divorced and to be caring for parents or other family members. When family socioeconomic status and age were included as covariates in multiple analyses of variance, results indicated that White caregivers had the highest prevalence of clinically significant levels of depression and symptoms of negative mental health outcomes (i.e., anxiety, hostility) compared to Black caregivers and noncaregivers of either race. No significant differences between Black caregivers and Black noncaregivers were discovered in any of the mental health outcomes. Social support from relatives outside the home was greater among both Black and White caregivers than among noncaregivers of either race. Compared to noncaregivers, caregivers of both racial groups reported that they were less satisfied with the quality of their social support, visited others less frequently, and participated in fewer social activities. Caregivers did not report significantly poorer self-rated physical health or more symptoms of poor health than noncaregivers. Miller, Campbell, Farran, Kaufman, and Davis (1995) examined relationships among race, sense of control, caregiver mastery, caregiver depression, and role strain. Study participants included 77 Black and 138 White spouse caregivers over the age of 60 who resided with a person with a diagnosed dementing illness. The convenience sample was recruited from Alzheimer's disease clinics, Veterans Administration hospital programs, community home-care programs, adult day care centers, and Black churches in a large metropolitan area. Data were collected by means of in-home structured interviews; respondents and interviewers were matched by race. Measures of caregiver stressors included the number of their spouse's limitations in activities of daily living (e.g., eating), difficulty performing caregiving tasks (e.g., personal care), and reactions to the care recipient's behavioral problems and changes (Behavior Problem Upset Index; Niederehe & Fruge, 1984). Psychological resources were measured with two constructs sense of control and caregiver mastery. The first construct represented "a sense of personal responsibility for one's own life and sense of control over others." The second, mastery, referred to a general feeling of competence in caregiving. A measure of depression (CES-D) and the Caregiver Global Role Strain scale (Archbold, Stewart, Greenlick, & Harvath, 1990) were used to assess caregiver distress outcomes. Compared to White caregivers, Black caregivers were younger, reported lower incomes and poorer health, and were more likely to be Protestant. White caregivers were more depressed and reported higher levels of role strain and being more upset by their spouse's disruptive behaviors. Results of regression analyses to predict distress outcomes indicated that sense of control was negatively related to depression and that caregiver mastery moderated the effects of stressors on depression. Mastery was a significant predictor of role strain. Overall, Black caregivers reported less distress than White caregivers, even when sociodemographic, stressor, and resource variables were controlled. Results indicated, however, that associations between specific predictors of distress (i.e., psychological resources) and the distress outcomes (i.e., depression and role strain) did not differ by race. The authors concluded that their study supports previous research that suggests that racial differences in the process of caregiving are minimal. Discussion Of the 12 studies included in the review, 10 focused on comparisons between Black and White caregivers, one examined differences between Black and Hispanic caregivers (Cox & Monk, 1990), and one compared White and Hispanic caregivers (Mintzer et al., 1992). Total samples ranged in size from 28 to 810; racial subgroups ranged in size from 29 to 157 (see Table 1). Five studies were based on a total sample size of less than 100 (Cox & Monk, 1990; Macera et al., 1992; Mintzer et al., 1992; Wood & Parham, 1990; Wykle & Segal 1,1991). Three recruitment strategies were typically used to identify caregivers: a) records of patients diagnosed at a geriatric assessment center or memory disorders clinic (Haley et al., 1995; Mintzer et al., 1992; Morycz et al., 1987), b) contacts with social service agencies, including day care programs, support groups, and the Alzheimer's Association (Cox, 1993,1995a; Lawton et al., 1992; Macera et al., 1992; Wykle & Segall, 1991), and c) contacts with either social service agencies or clinics (Cox & Monk, 1990; Hinrichsen & Ramirez, 1992; Macera et al., 1992; Miller et al., 1995; Wood & Parham, 1990). In three studies, gender and the caregiver's relationship to the patient were criteria for sample inclusion. Two studies included only females (Mintzer et al., 1992; Wood & Parham, 1990), one was restricted to daughters (Mintzer et al., 1992) and another to spouse caregivers (Miller et al., 1995). Two studies focused on caregivers of family members with AD (Mintzer et al., 1992; Wood & Parham, 1990); the remainder included caregivers of relatives with any dementing illness. One study (Morycz et al., 1987) included caregivers of cognitively and functionally impaired adults. Caregivers and a matched sample of noncaregivers were included in a recent study (Haley etal., 1995). 360 The Gerontologist

7 Although three studies were based on longitudinal designs (Cox & Monk, 1990; Lawton et al., 1992; Macera et al., 1992), change over time in the caregiving experience was reported in only one study (Cox & Monk, 1990). Most studies employed basic data analytic strategies (i.e., f-tests and chi-square) to assess between-group differences. Multivariate techniques were used to assess complex theory-based models and hypotheses in only a few studies (Haley et al., 1995; Lawton et al., 1992; Miller et al., 1995). Results of these studies indicated that relationships among model components were similar for Black and White caregivers and overall racial differences were minimal (Haley et al., 1995; Lawton et al., 1992; Miller, 1995). Several differences in demographic and background characteristics between Black and White caregivers were consistently reported. For example, Black caregivers were more likely to be an adult child, friend, or other family member; White caregivers were more likely to be a spouse (Cox, 1993, 1995a; Haley, 1995; Lawton et al., 1992; Hinrichsen & Ramirez, 1992, Macera et al., 1992; Wood & Parham, 1990; see Table 1). White caregivers were more likely to be married (Haley, 1995; Hinrichsen & Ramirez, 1992; Lawton et al., 1992; Wykle & Segall, 1991), older (Haley, 1995; Hinrichsen & Ramirez, 1992; Miller et al., 1995), more highly educated (Haley et al., 1995; Lawton et al., 1992), and to report higher incomes (Cox, 1993, 1995a; Haley et al., 1995; Lawton et al., 1992; Macera et al., 1992; Miller et al., 1995) than Black caregivers. Few demographic differences were reported between Black and Hispanic (Cox & Monk, 1990) and Hispanic and White caregivers (Mintzer et al., 1992). In the three studies in which the care recipient's health status was reported by race, no significant differences we discovered between the demented relatives of Black and White caregivers (Cox, 1993,1995a; Hinrichsen & Ramirez, 1992; Wykle & Segall, 1991). A range of topics was addressed in the 12 articles: caregiver burden, strain, satisfaction, mastery and control; the impact of caregiving on mental and physical health; coping strategies; patterns of social support; awareness and use of informal and formal supports; and attitudes about caregiving. In the majority of articles included in the review, racial differences in caregiver burden or stress were examined. In several studies, White caregivers reported higher levels of caregiver burden, stress, and strain (Hinrichsen & Ramirez, 1992; Lawton et al., 1992; Macera et al., 1992; Miller et al., 1995) and lower levels of caregiving mastery and satisfaction (Lawton et al., 1992) than Black caregivers. In one study, only minimal Black/ White differences in perceived hassles with various caregiving responsibilities were reported (Wykle & Segall, 1991). In two studies, no differences in caregiver stress were reported between Black and White caregivers (Cox, 1993; Wood & Parham, 1990). Similarly, no differences were reported between Black and Hispanic caregivers (Cox & Monk, 1990). Mental health outcomes, including depression, were examined in several studies. White caregivers were reported to be more depressed than Black caregivers (Haley et al., 1995; Lawton et al., 1992; Miller et al., 1995). In fact, Haley et al. (1995) reported that White caregivers experienced a higher prevalence of depression, anger, and hostility than White non-caregivers, Black caregivers, or Black non-caregivers. Cox and Monk (1990) reported that depression scores were twice as high for Hispanic as for Black caregivers. In contrast, differences in depression scores were not discovered between Hispanic and White caregivers (Mintzer et al., 1992) nor between Black and White caregivers (Cox, 1993). Similarly, Black/White differences were not reported in psychiatric symptomatology among caregivers (Hinrichsen & Ramirez, 1992). Racial differences in the process of coping with the demands of providing care to a relative with a dementing illness were also examined. Coping strategies used frequently by White caregivers included attending support groups and receiving help from professionals (Wood & Parham, 1990; Wykle & Segall, 1991). Black caregivers were much more likely to use prayer, faith, or religion as coping strategies (Wood & Parham, 1990; Wykle & Segall, 1991) and to discuss the care recipient with clergy members and friends (Cox, 1993; Wood & Parham, 1990). Hinrichsen and Ramirez (1992), however, reported that Black and White caregivers were more alike than different in terms of coping styles and professional help-seeking behavior. In several studies, Black caregivers reported receiving more informal support from family members and friends than White caregivers (Cox, 1993; Wood & Parham, 1990), yet also reported a greater need for additional help than White caregivers (Cox, 1993; Hinrichsen & Ramirez, 1992). In contrast, Hinrichsen and Ramirez (1992) reported that Black caregivers received less assistance from family members than White caregivers. Haley et al. (1995) found no evidence that Black caregivers relied more heavily on extended family support than White caregivers. Cox (1993) reported no differences between Black and White caregivers in the extent to which their social activities were restricted by caregiving and found that services provided by local chapters of the Alzheimer's Association were underutilized by both Black and White caregivers. Both Hispanic and Black caregivers were reported to rely more heavily on informal than formal support (Cox & Monk, 1990). The studies included in this review fail to support the contention that providing care to an adult with a dementing illness poses a risk to the caregiver's physical health (Macera et al., 1992; Haley et al., 1995; Wykle & Segall, 1991). According to Wykle and Segall (1991), the majority of Black and White caregivers rated their overall health as good or excellent and indicated that their physical health did not interfere with their caregiving responsibilities. Likewise, caregivers and noncaregivers reported no differences in self-rated physical health or symptoms of poor health (Haley et al., 1995). Attitudes toward caregiving were examined in a few studies. Black caregivers reported more traditional caregiving ideology (Lawton et al., 1992) and Vol. 37, No. 3,

8 more strongly held attitudes of filial support (Cox, 1993) than White caregivers. Compared to Black caregivers, Hispanic caregivers endorsed stronger views on filial support (Cox & Monk, 1990). White caregivers indicated a greater desire to institutionalize a relative with a dementing illness than Black caregivers (Hinrichsen & Ramirez, 1992; Morycz et al., 1987) or Hispanic caregivers (Mintzer et al., 1992). Conclusion The purpose of this study was to review those dementia caregiving studies published since 1985 that have examined racial, cultural, or ethnic differences among study participants. The majority of studies included in the review share sampling and methodological problems common to the caregiving literature published a decade ago. For example, few studies are based on large representative samples, incorporate multivariate analyses, include a control or comparison group, or test a clearly articulated theoretical framework. Fortunately, the review includes several articles that address some of the shortcomings of the early literature and provide direction for future research. For example, Haley et al. (1995) included a matched group of noncaregivers in their study of dementia caregivers. The authors contend that without the context provided by the data collected from noncaregivers, differences between Black and White respondents may have been misinterpreted as related to the caregiving experience. Despite the limitations of the majority of studies in the review, several findings were consistently reported. Compared to White caregivers, non-white caregivers are much less likely to be a spouse and much more likely to be an adult child, friend, or other family member. These relationship differences may affect the caregiving experience and should be addressed in research designs (e.g., by restricting samples to spouse or adult child caregivers) or analyses (e.g., by reporting results separately by caregiver relationship). Among predominantly White samples, for instance, researchers have demonstrated that caregiving outcomes differ between adult child and spouse caregivers (e.g., Deimling, Bass, Townsend, & Noelker, 1989; George & Gwyther, 1986). The majority of studies in the review were based on samples that included spouse, adult child, and other family caregivers, but failed to examine differences among these groups. Consideration of these differences is especially important in research that examines the impact of race, ethnicity, or culture on the caregiving experience. White caregivers generally reported higher levels of caregiver stress, burden, and depression and less strongly held beliefs about filial support than non- White caregivers. In a few studies, however, race differences in caregiving stress and depression were not discovered. These discrepant findings may be due to differences in study samples or designs or the conceptualization and measurement of key constructs. Additional research should involve a careful examination of the impact of race, ethnicity, and culture on constructs commonly used in caregiving research. An implicit assumption made in the studies reviewed here is that measures developed for and validated in one racial/ethnic group are appropriate for use with other groups. In fact, researchers have already noted that the meaning of key constructs such as caregiver burden or stress may be racially, ethnically, or culturally derived and distinct (Dilworth-Anderson & Anderson, 1994; Fredman et al., 1995; Hinrichsen & Ramirez, 1992). Attention to issues related to the conceptualization of constructs, selection of measures, and between-group measurement equivalence needs to be addressed in future caregiving research and may be advanced by qualitative approaches (Kuhlman et al., 1991) as well as structural modeling techniques. The potential effect of the race/ethnicity of the interviewer on responses obtained in an interview (Dilworth-Anderson & Anderson, 1994) is also a matter of concern. If, as Jackson (1989) contends, race interacts with methodology, more effort to match the race of the interviewer and respondent (as was the case for two studies included in the review; Miller et al., 1995; Wood & Parham, 1990) is in order. Including an assessment of the impact of the matching process in published findings would advance research in this area. Although some might criticize the fact that simple between-group comparisons by race were a primary focus of the majority of studies included in the review, Lawton et al. (1992) contend that such comparisons may be appropriate in an early stage of research in a particular area. Making comparisons by racial group, however, is inherently problematic due to the risk of attributing to race what may well be socioeconomic, educational, cultural, historical or other factors (Hinrichsen & Ramirez, 1992; Lawton et al., 1992; Stanford, 1990). At a minimum, controlling for educational level and income has been suggested as a first step in sorting out these potentially confounding influences. Such controls, however, were employed in only a few of the studies included in this review (Haley et al., 1995; Lawton et al., 1992; Miller et al., 1995; Wood & Parham 1990). When confounding factors were taken into account, several authors concluded that racial differences in the caregiving experience were minimal. In addition to examining racial, ethnic, and cultural differences in the caregiving experience, future research should also explore themes that are common across subgroups. Within-group variability should also be examined. For example, Mintzer et al. (1994) contend that differences among Mexicans, Puerto Ricans, and Cubans may be masked when data from these groups are aggregated and broadly referred to as Hispanic. As mentioned previously, the majority of studies included in this review were based on convenience samples that were typically recruited from families who use medical or social services (e.g., diagnosis and assessment, day care, support groups). Caregivers recruited in this manner are not likely to be 362 The Gerontologist

9 representative of dementia caregivers who do not seek services at all or who do so only when a crisis occurs. Compounding the problem of non-representative samples are lower rates of participation in dementia research among non-whites (Ballard, Nash, Raiford, & Harrell, 1993) and racial/ethnic differences in patterns of service utilization (Burton et al., 1995). Several strategies to increase the representativeness of non-white samples have been advanced: a) expand referral networks to include the church and other community-based organizations, b) train personnel who are culturally compatible with the target group to conduct outreach education, c) provide social and health services within the target ethnic community as part of the process of conducting research, and d) involve non-white professional staff, particularly physicians, in recruitment efforts (Ballard et al., 1993, Hart, Gallagher-Thompson, Davies, DiMinno & Lessin, 1996). Although the stated goal of three studies was to examine ethnic and/or cultural differences in caregiving (Macera et al., 1992; Mintzer et al., 1992; Wood & Parham, 1990), the constructs of ethnicity and culture were not always defined or operationalized. Macera et al. (1992), for example, used race (Black/White) as a proxy for ethnicity. Mintzer et al. (1992) compared Hispanic and White caregivers, but did not directly assess or discuss ethnicity. Wood and Parham (1990) define ethnicity in terms of "culture, shared ways of living, and shared meaning about life experiences" and operationalized ethnicity by classifying subjects on the basis of race and residence, controlling for income and educational level. Ethnic differences were inferred from comparisons between subgroups created by race (Black/ White) and residence (rural/urban). In one study, Miller et al. (1995) offered several cultural interpretations of the finding that Black caregivers report less burden and distress than White caregivers. The authors contend, for instance, that the distress of caregiving may be viewed as relatively minor in light of the continual struggles that Blacks in this society face or that Black caregivers may be more likely to view the symptoms of dementing illnesses as part of the normal aging process. Although these interpretations are intriguing, strategies for directly assessing the cultural and ethnic context of caregiving should be considered. Dilworth-Anderson and Anderson (1994), for example, present a contextual framework for understanding the impact of the Black experience on dementia caregiving. These authors contend that several contextual levels need to be considered: sociocultural (i.e., employment, education), interpersonal (i.e., reciprocity, family responsibility), situational (i.e., patient impairment, unemployment), temporal (i.e., timing of caregiving in the life cycle), and personal (i.e., coping styles, physical health). Combining such a contextual framework with stress and coping theories that have been refined in recent caregiving literature would represent a theoretical and conceptual advancement that is particularly important for examining racial, cultural, and ethnic diversity in the caregiving experience. In summary, to advance the dementia caregiving literature, several issues need to be addressed: increasing sample size and representativeness, examining differences within and between subgroups, including a diversity of non-white subgroups (i.e., Blacks, Hispanics, American Indians, Asians/Pacific Islanders), and assuring measurement equivalence between subgroups. Additional research that includes large representative samples of non-whites is needed to explore gender differences in the caregiving process as well as differences related to the caregiver's relationship to the patient. Studies that include both caregivers and a matched sample of non-caregivers and prospective studies that follow a cohort of adults from non-caregiving to caregiving roles (Schulz et al., 1995) would make an especially valuable contribution to our understanding of the dynamics of the caregiving experience. 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