Copyright 7992 by The Cerontological Society of America The Cerontologist Vol. 32, No. 3, 37S-381
We compared black (n = 33) and white (n = 119) caregivers of dementia patients on indices of adaptation, adjustment, and utilization of supportive services. Black and white caregivers differed most notably on marital and financial/insurance status, but there were few differences between them in their adaptation to dementia responsibilities. Black caregivers, however, evidenced less burden and less desire to institutionalize their relatives and were more likely to report more unmet service needs than were whites. Key Words: Race, Coping, Burden, Institutionalization
Black and White Dementia Caregivers: A Comparison of their Adaptation, Adjustment, and Service Utilization1
Recent interest in race in late life reflects gerontologists' concern that this issue deserves more careful attention than has been devoted to it (Gibson, 1989; Jackson, 1989a). A fuller understanding of the influence of factors associated with racial status in the lives of older adults can further explain the social, psychological, and physiological heterogeneity so evident in late life. Given projections that nonwhite individuals will constitute an increasing proportion of the older population (U.S. Bureau of the Census, 1984), policymakers must better understand how cultural, economic, and social class issues that covary with racial status bear on the utilization and delivery of services to minority aged. Available evidence on black aged indicates that they have reasonably well developed ties with their families and can rely on them for social, emotional, and practical support (Chatters & Taylor, 1990). Recent reviews of the literature on race and age, however, have noted that this body of work suffers from a variety of conceptual, methodological, and measurement problems (Jackson, 1989b). With the notable exception of a national probability sample of black older adults gathered in the National Survey of Black Americans (e.g., Taylor, 1985), most studies of black older people have included only small numbers of subjects and have not used multivariate statistical methods. Yet multivariate methods permit control of socioeconomic variables, which may sometimes be the chief determinants of differences found between blacks and others.
Another area of interest has been in documenting whether access to health care and social services is comparable for blacks and whites. Historically, access to adequate care was denied to blacks. Although civil rights legislation and Medicare significantly increased service availability to the black aged, there continues to be concern that financial, cultural, or service-delivery factors result in different serviceutilization patterns for blacks (Bell, Kasschau, & Zellman, 1976; Mindel & Wright, 1982). One of the most compelling tests of the durability of the late-life family is dementia. A variety of studies have clearly documented the myriad of problems with which family caregivers of demented aged must contend as well as the physical and mental health problems from which they suffer (Cohler et al., 1989). Some research has examined the ways in which black persons cope with dementia caregiving (Segall & Wykle, 1988-89), and Valle (1981) has noted the need for a better understanding of how racial factors may bear on dementia. Notably absent in this rapidly growing literature is published work that has examined whether the response of black persons to the demands of caregiving for dementia differs from that of other groups. Although some (e.g., Stanford, 1990) have raised concerns that comparison of blacks with whites runs the risk of attributing to race what in actuality are socioeconomic, historical, or other factors, the caregiver literature has been too dominated by studies of middle-class white individuals. A comparison of white and black caregivers provides insight into whether the adaptation and adjustment of white caregivers contending with dementia can be generalized to that of blacks. In this study we asked the following questions: 1) Does the social and familial "context" of dementia caregiving differ for black and white caregivers? 2) Do black caregivers evidence patterns of adaptation to caregiving that are different from those of whites?
1 This research was supported by a grant from the New York Community Trust. A previous version of this paper was presented at the Annual Meeting of the American Psychological Association in San Francisco, August 1991. 2 Ceropsychiatry Service and Research Department, Hillside Hospital Division of Long Island Jewish Medical Center, P.O. Box 38, Glen Oaks, NY 11004. 3 Hebrew Home for the Aged at Riverdale, Bronx, NY.
Vol. 32, No. 3,1992
375
Downloaded from http://gerontologist.oxfordjournals.org/ at New York University on July 18, 2015
Gregory A. Hinrichsen, PhD,2 and Mildred Ramirez, MA3
ber of services used, number of services provided only by family, number of services provided only by formal care service providers, and number of services jointly provided by family/formal care providers. In addition, an index of unmet needs was calculated by subtracting number of services received from services perceived as needed. Because all patients were in need of and receiving some form of transportation or medical services, we used two OARS items that ascertained dissatisfaction with available transportation or medical care as part of the index of unmet needs.
3) Does adjustment to caregiving vary by racial status? 4) Do the perception, need, and use of supportive services for the patient differ between white and black dementia caregivers? Method
Caregiver-related Measures. — A stress and coping model (Folkman & Lazarus, 1984) was the conceptual framework through which we examined issues in adaptation to dementia caregiving. The use of such an approach responds to recent calls for research on black aged from an adaptational perspective that evaluates perception of problems, strategies used to deal with problems, and help-seeking strategies (McKinney, Harel, & Williams, 1990). Based on Folkman and Lazarus's (1984) concept of appraisal, caregivers were asked whether care for the patient was a situation: 1) that they could change or do something about; 2) that must be accepted or gotten used to; 3) that they needed to know more about before they could act; and 4) in which they had to hold themselves back before doing what they wanted to do. How caregivers coped with dementia caregiving was measured using the Health and Daily Living Form indices of coping (Moos et al., 1984). Respondents were asked whether and how often they used each of 33 different coping strategies (1 = no to 4 = yes, fairly often) to contend with caregiving-related circumstances. According to Moos and colleagues, the items are grouped into active cognitive coping, active behavioral coping, and avoidance coping, with respective alpha reliability coefficients in this study of .62, .67, and .61. Also as part of these items, respondents were asked which of four different sources of mental health professional or of nonmental health professional (e.g., minister, lawyer) help they had engaged to better contend with dementiarelated difficulties. Items were summed to form two indices of mental health and nonmental health professional help-seeking. The ways that caregivers managed dementiarelated problems evidenced by the older patient were measured using the Dementia Management Strategies Scale (Scott, Wiegand, & Niederehe, 1984). Respondents were asked to report the frequency with which they used 34 different strategies (1 = never to 5 = most of the time). Three scales were derived from an orthogonal (varimax) rotation of a three-factor principal axis solution. Items with factor loadings that were greater than or equal to 0.40 were included. The three factors that emerged from this analysis were: criticism, which describes efforts to manage the patient by yelling, criticizing, blaming, and related behaviors; encouragement, which includes caregivers' reports that they tried to get their
Measures Patient-related Measures. — Patients were administered the Mini-Mental State Exam (Folstein, Folstein, & McHugh, 1975), a widely used screening measure of gross cognitive functioning. Caregivers were asked to provide demographic information on the dementia patient, estimate weeks since onset of dementia symptoms, and characterize the kind and severity of impairment in the patient's capacity for activities of daily living (ADLs) and presence of memory and behavior problems (Memory and Behavior Problems Checklist; Zarit & Zarit, 1983). Caregivers were also asked to characterize the patient's physical health status on a scale from 1 (excellent) to 5 (very poor). Using the Duke Older Americans Resources and Services Instrument (OARS; Duke University, 1978), we also ascertained which of 17 supportive services relevant to dementia patients that the caregiver felt the patient needed, which services the patient was actually receiving, and who provided services. From these questions several indices were derived including: number of services needed, num376
The Gerontologist
Downloaded from http://gerontologist.oxfordjournals.org/ at New York University on July 18, 2015
Sample One hundred and fifty-two patients with a medical diagnosis of dementia and their 152 primary caregivers were included in the study; 119 patients/ caregivers were white (primarily Irish, Italian, and Jewish) and 33 were black (3 of whom were also Hispanic). We recruited study participants from diverse settings, which included New York area medical, psychiatric, neurology, and specialized dementia evaluation clinics, several community physicians who specialized in the evaluation and management of dementia, and a social service program. Staff in these settings identified patients with a medical diagnosis of dementia prior to scheduled appointments. Patients/caregivers were then recruited at their next appointment. Recruitment efforts continued in an ongoing and systematic way throughout the study. Based on data from the patient's medical record, 40% of patients included in the study were diagnosed with senile dementia of the Alzheimer's type, 17.4% with dementia secondary to cerebrovascular problems (e.g., multi-infarct dementia, stroke), 4.2% with mixed dementias, 2.8% with dementia secondary to Parkinson's disease or alcohol abuse, and 35.5% with dementia that had not been characterized (at the point of study entry) by subtype. There were no significant differences in type of dementia between black and white patients. Dementia patients were also evaluated with a brief cognitive screening battery. Caregivers were interviewed for about 2 hours using a structured protocol.
Results
The Context of Caregiving As can be seen in Table 1, black and white patients differed in several demographic characteristics. The vast majority of black patients were unmarried whereas almost half of whites were married. Despite the fact that black patients were younger than whites, black patients were more likely to be widowed. Black patients also had less income than whites (over two-thirds earned less than $10,000 per year compared with only about one-third of whites). Consistent with this, black patients had lower scores than whites on Hollingshead's (1977) index of social class position. Two-thirds of black patients used Medicaid, in contrast to only 15% of the white patients. The only demographic variable on which black and white patients did not differ was gender: the preponderance of patients and caregivers were female. In contrast to the background descriptors, black and white patients did not significantly differ on any of the indices of patient illness characteristics. Black and white caregivers also differed on several of the background descriptors. Black caregivers were much less likely to be currently married than white caregivers. The overwhelming majority (73%) of black caregivers were adult children whereas white caregivers were fairly evenly divided between spouses and adult children. "Other" individuals also constituted a greater percentage of caregivers among blacks than whites. Black caregivers were younger than whites by an average of almost 10 years — primarily reflecting the higher proportion of adult child caregivers among blacks compared with whites. Black and white caregivers did not significantly differ on social class position although there was a trend for blacks to be lower than whites (p = .09). Black caregivers were predominantly Catholic and Protestant, whereas whites were chiefly Catholic and Jewish. Black and white caregivers did not differ Vol.32, No. 3,1992
Table 1. Sample Characteristics for Black and White Patients and Caregivers Characteristics Patient background Gender Male (%) Female (%) Marital Status Married (%) Single (%) Widowed (%) Divorced/separated (%) Earnings $0-$4,999 (%) $5,000-$9,999 (%) $10,000-$19,999 (%) $20,000+ (%) Medicaid coverage No (%) Yes (%) Social class position (X, SD) Age (X, SD) Patient illness Physical health Excellent (%) Good (%) Fair (%) Poor/very poor (%) Mini-mental state exam (X, SD) Weeks since illness onset (X, SD) Behavioral problems (X, SD) Problems in ADL (X, SD) Caregiver demographics Gender Male (%) Female (%) Marital status Married (%) Single (%) Widowed (%) Divorced/separated (%) Identity Spouse(%) Adult child (%) Other (%) Religion Protestant (%) Catholic (%) Jewish (%) None/other (%) Age (X, SD) Social class (X, SD) No. of other caregivers (X, SD)
Blacks (n = 33)
Whites (n = 119)
torx2
21.2 78.8
31.3 68.9
.79
18.2 3.0 60.6
49.6 0.8 46.2
16.61***
18.2
3.4
24.0 44.8 17.2 13.7
4.3 28.7 38.2 28.7
17.78***
33.3 66.7
84.7 15.3
32.41***
29.83 (14.91) 74.67 (7.68)
36.12 (13.86) 78.76 (6.93)
18.2 39.4 30.3 12.1
23.5 47.9 20.2 8.4
-2.06* -2.94**
2.31
9.66 (7.54) -1.28 7.65 (7.29) 244.90 (204.61)234.57 (180.61) .28
93.3 (23.37)
90.62 (21.38)
.60
22.24 (7.05)
22.12 (6.75)
.09
21.1 78.8
31.9 68.1
.95
57.6 9.1 6.1
79.8 10.1 4.2
13.16**
27.3
5.9
15.2 72.7 12.1
42.4 54.2 3.4
10.47**
39.4 48.5 0.0 12.1 52.79 (12.48) 41.09 (13.81)
4.2 45.4 41.2 9.2 61.49(13.84) 45.37(11.91)
40.88***
-3.26*** -1.72
1.58(1.68)
1.32 (1.42)
.86
* p < .05; * * p < . 0 1 ; ***pX.001.
in their reports of number of other individuals who provided substantive assistance to the patient. Among the adult children only, 29% of the black caregivers were divorced/separated compared with 9% of the whites; and 37% of black adult child caregivers were actively parenting compared with 20.3% of whites. 377
Downloaded from http://gerontologist.oxfordjournals.org/ at New York University on July 18, 2015
relative to discuss feelings, praised the relative, and reframed relatives' problems in a more positive light; and active management, which encompasses activities to safeguard, assist, engage, and stimulate the patient. Alpha reliability coefficients of the subscales were .85, .80, and .11, respectively. Three domains of adjustment to caregiving that have been used in other caregiver research were chosen for the study. The Burden Interview (Zarit & Zarit, 1983) is a 22-item measure that evaluates feelings of burden specific to an individual's role as caregiver. Its alpha reliability in this study was .91. The Symptom Checklist-90 (SCL-90; Derogatis, 1977) was used to evaluate the presence of a range of psychiatrically related symptomatology, with symptoms summed to form one index of impairment. Desire-toInstitutionalize (Morycz, 1985) is a 6-item measure that queries respondents regarding thoughts about or concrete actions related to institutionalization of the patient. Its alpha reliability was .78.
The demographic characteristics of this sample mirror several black/white differences evident in the population at large. In national census data summarized by Jackson (1980), of white women in the 65-74 age group 47.6% were married, whereas this was true for only 33.2% of blacks. Also, in the mid-1980s the median income of blacks 65 and older was less than two-thirds that of white elderly (Manuel, 1988). For younger individuals there are marital status differences also. In 1980, for example, among all races age 35-44, 84% had intact marriages compared with 49% of black women (Glick, 1981). Adaptation and Adjustment to Caregiving Table 2 summarizes the results of t tests and x2 analyses of differences between black and white caregivers on indices of appraisal, coping, helpseeking behavior, dementia management strategies, and adjustment. There were no significant differences in these analyses between black and white caregivers except that black caregivers reported lower levels of burden. There was also a trend (p = .06) for blacks to evidence less desire to institutionalize the patient than whites. SCL-90 indexed psychiatric symptoms were comparable in the two groups.
Table 2. Comparison of Black and White Caregivers on Caregiving-related Behaviors Behavior
Blacks (n == 33)
Appraisal Could change No (%) 78.8 Yes (%) 21.2 Accept situation No (%) 15.2 Yes (%) 84.8 Need to know more No (%) 51.5 Yes (%) 48.5 Hold self back from acting 45.5 No (%) Yes (%) 54.5
Whites (n = 119)
tor\2
85.6 14.4
.46
24.6 75.4
.36
49.2 50.8
.96
39.3 60.7
.66
Coping
In the domain of supportive services (see Table 2), black caregivers perceived significantly more need for services than did whites. Compared with whites, black caregivers significantly endorsed a greater need for services in the following areas: remedial training (46.7% vs. 27%, x2 = 3.45, p < .05), nursing care (39.4% vs. 12%, x2 = 11-33, p < .001), physical therapy (36.4% vs. 17.2%, x2 = 4.49, p < .05), and need for a comprehensive evaluation (57.6% vs. 33.3%, x2 = 5.40, p < .05). Black caregivers were more likely to endorse the need for nursing care and physical therapy than whites, although the physical health status of their relatives was comparable to that of whites. Notably, all four need areas endorsed by black caregivers more often than whites could be provided by the formal care network only. The two groups did not differ in the number of services used, but a different pattern of use emerged. The number of supportive services provided exclusively by black family members was less than provided by whites. The two groups did not differ in the number of needs met only by formal service providers or jointly met by family and formal services. There was, however, a nonsignificant trend (p = .06) for black patients to receive more jointly provided services than whites. Most notably, black caregivers reported that their patient relatives had a significantly larger number of unmet needs than did whites. Controlling for Background Differences Because black and white patients and caregivers differed on a variety of background variables, the bivariate relationships of these variables and appraisal, coping, support-seeking, dementia manage378
26.67 (5.61)
1.78
31.85 (6.05) 12.34 (3.15)
.72
.39
.35 (.63) 1.08 (.98)
-.16 -1.41
2.35 (.80) 3.05 (.87)
-.34 1.36
4.10 (.74)
-1.44
38.15 (17.11) -2.52* 1.92(1.85)
-2.16
130.64 (33.69)
-.98
10.20 (2.23)
2.46*
9.64 (2.02) 1.33(1.50)
-.50 3.01**
4.45 (1.96)
-2.46*
3.09(1.56)
.47
2.08 (2.07)
1.86
*p
We compared black (n = 33) and white (n = 119) caregivers of dementia patients on indices of adaptation, adjustment, and utilization of supportive services. Black and white caregivers differed most notably on marital and financial/insurance status, but there were few differences between them in their adaptation to dementia responsibilities. Black caregivers, however, evidenced less burden and less desire to institutionalize their relatives and were more likely to report more unmet service needs than were whites. Key Words: Race, Coping, Burden, Institutionalization
Black and White Dementia Caregivers: A Comparison of their Adaptation, Adjustment, and Service Utilization1
Recent interest in race in late life reflects gerontologists' concern that this issue deserves more careful attention than has been devoted to it (Gibson, 1989; Jackson, 1989a). A fuller understanding of the influence of factors associated with racial status in the lives of older adults can further explain the social, psychological, and physiological heterogeneity so evident in late life. Given projections that nonwhite individuals will constitute an increasing proportion of the older population (U.S. Bureau of the Census, 1984), policymakers must better understand how cultural, economic, and social class issues that covary with racial status bear on the utilization and delivery of services to minority aged. Available evidence on black aged indicates that they have reasonably well developed ties with their families and can rely on them for social, emotional, and practical support (Chatters & Taylor, 1990). Recent reviews of the literature on race and age, however, have noted that this body of work suffers from a variety of conceptual, methodological, and measurement problems (Jackson, 1989b). With the notable exception of a national probability sample of black older adults gathered in the National Survey of Black Americans (e.g., Taylor, 1985), most studies of black older people have included only small numbers of subjects and have not used multivariate statistical methods. Yet multivariate methods permit control of socioeconomic variables, which may sometimes be the chief determinants of differences found between blacks and others.
Another area of interest has been in documenting whether access to health care and social services is comparable for blacks and whites. Historically, access to adequate care was denied to blacks. Although civil rights legislation and Medicare significantly increased service availability to the black aged, there continues to be concern that financial, cultural, or service-delivery factors result in different serviceutilization patterns for blacks (Bell, Kasschau, & Zellman, 1976; Mindel & Wright, 1982). One of the most compelling tests of the durability of the late-life family is dementia. A variety of studies have clearly documented the myriad of problems with which family caregivers of demented aged must contend as well as the physical and mental health problems from which they suffer (Cohler et al., 1989). Some research has examined the ways in which black persons cope with dementia caregiving (Segall & Wykle, 1988-89), and Valle (1981) has noted the need for a better understanding of how racial factors may bear on dementia. Notably absent in this rapidly growing literature is published work that has examined whether the response of black persons to the demands of caregiving for dementia differs from that of other groups. Although some (e.g., Stanford, 1990) have raised concerns that comparison of blacks with whites runs the risk of attributing to race what in actuality are socioeconomic, historical, or other factors, the caregiver literature has been too dominated by studies of middle-class white individuals. A comparison of white and black caregivers provides insight into whether the adaptation and adjustment of white caregivers contending with dementia can be generalized to that of blacks. In this study we asked the following questions: 1) Does the social and familial "context" of dementia caregiving differ for black and white caregivers? 2) Do black caregivers evidence patterns of adaptation to caregiving that are different from those of whites?
1 This research was supported by a grant from the New York Community Trust. A previous version of this paper was presented at the Annual Meeting of the American Psychological Association in San Francisco, August 1991. 2 Ceropsychiatry Service and Research Department, Hillside Hospital Division of Long Island Jewish Medical Center, P.O. Box 38, Glen Oaks, NY 11004. 3 Hebrew Home for the Aged at Riverdale, Bronx, NY.
Vol. 32, No. 3,1992
375
Downloaded from http://gerontologist.oxfordjournals.org/ at New York University on July 18, 2015
Gregory A. Hinrichsen, PhD,2 and Mildred Ramirez, MA3
ber of services used, number of services provided only by family, number of services provided only by formal care service providers, and number of services jointly provided by family/formal care providers. In addition, an index of unmet needs was calculated by subtracting number of services received from services perceived as needed. Because all patients were in need of and receiving some form of transportation or medical services, we used two OARS items that ascertained dissatisfaction with available transportation or medical care as part of the index of unmet needs.
3) Does adjustment to caregiving vary by racial status? 4) Do the perception, need, and use of supportive services for the patient differ between white and black dementia caregivers? Method
Caregiver-related Measures. — A stress and coping model (Folkman & Lazarus, 1984) was the conceptual framework through which we examined issues in adaptation to dementia caregiving. The use of such an approach responds to recent calls for research on black aged from an adaptational perspective that evaluates perception of problems, strategies used to deal with problems, and help-seeking strategies (McKinney, Harel, & Williams, 1990). Based on Folkman and Lazarus's (1984) concept of appraisal, caregivers were asked whether care for the patient was a situation: 1) that they could change or do something about; 2) that must be accepted or gotten used to; 3) that they needed to know more about before they could act; and 4) in which they had to hold themselves back before doing what they wanted to do. How caregivers coped with dementia caregiving was measured using the Health and Daily Living Form indices of coping (Moos et al., 1984). Respondents were asked whether and how often they used each of 33 different coping strategies (1 = no to 4 = yes, fairly often) to contend with caregiving-related circumstances. According to Moos and colleagues, the items are grouped into active cognitive coping, active behavioral coping, and avoidance coping, with respective alpha reliability coefficients in this study of .62, .67, and .61. Also as part of these items, respondents were asked which of four different sources of mental health professional or of nonmental health professional (e.g., minister, lawyer) help they had engaged to better contend with dementiarelated difficulties. Items were summed to form two indices of mental health and nonmental health professional help-seeking. The ways that caregivers managed dementiarelated problems evidenced by the older patient were measured using the Dementia Management Strategies Scale (Scott, Wiegand, & Niederehe, 1984). Respondents were asked to report the frequency with which they used 34 different strategies (1 = never to 5 = most of the time). Three scales were derived from an orthogonal (varimax) rotation of a three-factor principal axis solution. Items with factor loadings that were greater than or equal to 0.40 were included. The three factors that emerged from this analysis were: criticism, which describes efforts to manage the patient by yelling, criticizing, blaming, and related behaviors; encouragement, which includes caregivers' reports that they tried to get their
Measures Patient-related Measures. — Patients were administered the Mini-Mental State Exam (Folstein, Folstein, & McHugh, 1975), a widely used screening measure of gross cognitive functioning. Caregivers were asked to provide demographic information on the dementia patient, estimate weeks since onset of dementia symptoms, and characterize the kind and severity of impairment in the patient's capacity for activities of daily living (ADLs) and presence of memory and behavior problems (Memory and Behavior Problems Checklist; Zarit & Zarit, 1983). Caregivers were also asked to characterize the patient's physical health status on a scale from 1 (excellent) to 5 (very poor). Using the Duke Older Americans Resources and Services Instrument (OARS; Duke University, 1978), we also ascertained which of 17 supportive services relevant to dementia patients that the caregiver felt the patient needed, which services the patient was actually receiving, and who provided services. From these questions several indices were derived including: number of services needed, num376
The Gerontologist
Downloaded from http://gerontologist.oxfordjournals.org/ at New York University on July 18, 2015
Sample One hundred and fifty-two patients with a medical diagnosis of dementia and their 152 primary caregivers were included in the study; 119 patients/ caregivers were white (primarily Irish, Italian, and Jewish) and 33 were black (3 of whom were also Hispanic). We recruited study participants from diverse settings, which included New York area medical, psychiatric, neurology, and specialized dementia evaluation clinics, several community physicians who specialized in the evaluation and management of dementia, and a social service program. Staff in these settings identified patients with a medical diagnosis of dementia prior to scheduled appointments. Patients/caregivers were then recruited at their next appointment. Recruitment efforts continued in an ongoing and systematic way throughout the study. Based on data from the patient's medical record, 40% of patients included in the study were diagnosed with senile dementia of the Alzheimer's type, 17.4% with dementia secondary to cerebrovascular problems (e.g., multi-infarct dementia, stroke), 4.2% with mixed dementias, 2.8% with dementia secondary to Parkinson's disease or alcohol abuse, and 35.5% with dementia that had not been characterized (at the point of study entry) by subtype. There were no significant differences in type of dementia between black and white patients. Dementia patients were also evaluated with a brief cognitive screening battery. Caregivers were interviewed for about 2 hours using a structured protocol.
Results
The Context of Caregiving As can be seen in Table 1, black and white patients differed in several demographic characteristics. The vast majority of black patients were unmarried whereas almost half of whites were married. Despite the fact that black patients were younger than whites, black patients were more likely to be widowed. Black patients also had less income than whites (over two-thirds earned less than $10,000 per year compared with only about one-third of whites). Consistent with this, black patients had lower scores than whites on Hollingshead's (1977) index of social class position. Two-thirds of black patients used Medicaid, in contrast to only 15% of the white patients. The only demographic variable on which black and white patients did not differ was gender: the preponderance of patients and caregivers were female. In contrast to the background descriptors, black and white patients did not significantly differ on any of the indices of patient illness characteristics. Black and white caregivers also differed on several of the background descriptors. Black caregivers were much less likely to be currently married than white caregivers. The overwhelming majority (73%) of black caregivers were adult children whereas white caregivers were fairly evenly divided between spouses and adult children. "Other" individuals also constituted a greater percentage of caregivers among blacks than whites. Black caregivers were younger than whites by an average of almost 10 years — primarily reflecting the higher proportion of adult child caregivers among blacks compared with whites. Black and white caregivers did not significantly differ on social class position although there was a trend for blacks to be lower than whites (p = .09). Black caregivers were predominantly Catholic and Protestant, whereas whites were chiefly Catholic and Jewish. Black and white caregivers did not differ Vol.32, No. 3,1992
Table 1. Sample Characteristics for Black and White Patients and Caregivers Characteristics Patient background Gender Male (%) Female (%) Marital Status Married (%) Single (%) Widowed (%) Divorced/separated (%) Earnings $0-$4,999 (%) $5,000-$9,999 (%) $10,000-$19,999 (%) $20,000+ (%) Medicaid coverage No (%) Yes (%) Social class position (X, SD) Age (X, SD) Patient illness Physical health Excellent (%) Good (%) Fair (%) Poor/very poor (%) Mini-mental state exam (X, SD) Weeks since illness onset (X, SD) Behavioral problems (X, SD) Problems in ADL (X, SD) Caregiver demographics Gender Male (%) Female (%) Marital status Married (%) Single (%) Widowed (%) Divorced/separated (%) Identity Spouse(%) Adult child (%) Other (%) Religion Protestant (%) Catholic (%) Jewish (%) None/other (%) Age (X, SD) Social class (X, SD) No. of other caregivers (X, SD)
Blacks (n = 33)
Whites (n = 119)
torx2
21.2 78.8
31.3 68.9
.79
18.2 3.0 60.6
49.6 0.8 46.2
16.61***
18.2
3.4
24.0 44.8 17.2 13.7
4.3 28.7 38.2 28.7
17.78***
33.3 66.7
84.7 15.3
32.41***
29.83 (14.91) 74.67 (7.68)
36.12 (13.86) 78.76 (6.93)
18.2 39.4 30.3 12.1
23.5 47.9 20.2 8.4
-2.06* -2.94**
2.31
9.66 (7.54) -1.28 7.65 (7.29) 244.90 (204.61)234.57 (180.61) .28
93.3 (23.37)
90.62 (21.38)
.60
22.24 (7.05)
22.12 (6.75)
.09
21.1 78.8
31.9 68.1
.95
57.6 9.1 6.1
79.8 10.1 4.2
13.16**
27.3
5.9
15.2 72.7 12.1
42.4 54.2 3.4
10.47**
39.4 48.5 0.0 12.1 52.79 (12.48) 41.09 (13.81)
4.2 45.4 41.2 9.2 61.49(13.84) 45.37(11.91)
40.88***
-3.26*** -1.72
1.58(1.68)
1.32 (1.42)
.86
* p < .05; * * p < . 0 1 ; ***pX.001.
in their reports of number of other individuals who provided substantive assistance to the patient. Among the adult children only, 29% of the black caregivers were divorced/separated compared with 9% of the whites; and 37% of black adult child caregivers were actively parenting compared with 20.3% of whites. 377
Downloaded from http://gerontologist.oxfordjournals.org/ at New York University on July 18, 2015
relative to discuss feelings, praised the relative, and reframed relatives' problems in a more positive light; and active management, which encompasses activities to safeguard, assist, engage, and stimulate the patient. Alpha reliability coefficients of the subscales were .85, .80, and .11, respectively. Three domains of adjustment to caregiving that have been used in other caregiver research were chosen for the study. The Burden Interview (Zarit & Zarit, 1983) is a 22-item measure that evaluates feelings of burden specific to an individual's role as caregiver. Its alpha reliability in this study was .91. The Symptom Checklist-90 (SCL-90; Derogatis, 1977) was used to evaluate the presence of a range of psychiatrically related symptomatology, with symptoms summed to form one index of impairment. Desire-toInstitutionalize (Morycz, 1985) is a 6-item measure that queries respondents regarding thoughts about or concrete actions related to institutionalization of the patient. Its alpha reliability was .78.
The demographic characteristics of this sample mirror several black/white differences evident in the population at large. In national census data summarized by Jackson (1980), of white women in the 65-74 age group 47.6% were married, whereas this was true for only 33.2% of blacks. Also, in the mid-1980s the median income of blacks 65 and older was less than two-thirds that of white elderly (Manuel, 1988). For younger individuals there are marital status differences also. In 1980, for example, among all races age 35-44, 84% had intact marriages compared with 49% of black women (Glick, 1981). Adaptation and Adjustment to Caregiving Table 2 summarizes the results of t tests and x2 analyses of differences between black and white caregivers on indices of appraisal, coping, helpseeking behavior, dementia management strategies, and adjustment. There were no significant differences in these analyses between black and white caregivers except that black caregivers reported lower levels of burden. There was also a trend (p = .06) for blacks to evidence less desire to institutionalize the patient than whites. SCL-90 indexed psychiatric symptoms were comparable in the two groups.
Table 2. Comparison of Black and White Caregivers on Caregiving-related Behaviors Behavior
Blacks (n == 33)
Appraisal Could change No (%) 78.8 Yes (%) 21.2 Accept situation No (%) 15.2 Yes (%) 84.8 Need to know more No (%) 51.5 Yes (%) 48.5 Hold self back from acting 45.5 No (%) Yes (%) 54.5
Whites (n = 119)
tor\2
85.6 14.4
.46
24.6 75.4
.36
49.2 50.8
.96
39.3 60.7
.66
Coping
In the domain of supportive services (see Table 2), black caregivers perceived significantly more need for services than did whites. Compared with whites, black caregivers significantly endorsed a greater need for services in the following areas: remedial training (46.7% vs. 27%, x2 = 3.45, p < .05), nursing care (39.4% vs. 12%, x2 = 11-33, p < .001), physical therapy (36.4% vs. 17.2%, x2 = 4.49, p < .05), and need for a comprehensive evaluation (57.6% vs. 33.3%, x2 = 5.40, p < .05). Black caregivers were more likely to endorse the need for nursing care and physical therapy than whites, although the physical health status of their relatives was comparable to that of whites. Notably, all four need areas endorsed by black caregivers more often than whites could be provided by the formal care network only. The two groups did not differ in the number of services used, but a different pattern of use emerged. The number of supportive services provided exclusively by black family members was less than provided by whites. The two groups did not differ in the number of needs met only by formal service providers or jointly met by family and formal services. There was, however, a nonsignificant trend (p = .06) for black patients to receive more jointly provided services than whites. Most notably, black caregivers reported that their patient relatives had a significantly larger number of unmet needs than did whites. Controlling for Background Differences Because black and white patients and caregivers differed on a variety of background variables, the bivariate relationships of these variables and appraisal, coping, support-seeking, dementia manage378
26.67 (5.61)
1.78
31.85 (6.05) 12.34 (3.15)
.72
.39
.35 (.63) 1.08 (.98)
-.16 -1.41
2.35 (.80) 3.05 (.87)
-.34 1.36
4.10 (.74)
-1.44
38.15 (17.11) -2.52* 1.92(1.85)
-2.16
130.64 (33.69)
-.98
10.20 (2.23)
2.46*
9.64 (2.02) 1.33(1.50)
-.50 3.01**
4.45 (1.96)
-2.46*
3.09(1.56)
.47
2.08 (2.07)
1.86
*p
