Predictors of Time to Nursing Home Placement in ... - SAGE Journals

10.1177/0898264304264206 JOURNAL OF AGING AND HEALTH / June 2004 Stevens et al. / PREDICTORS OF NURSING HOME PLACEMENT

Predictors of Time to Nursing Home Placement in White and African American Individuals With Dementia ALAN STEVENS JASON OWEN DAVID ROTH OLIVIO CLAY ALFRED BARTOLUCCI

University of Alabama at Birmingham

WILLIAM HALEY

University of South Florida

Objective: This study examined the influence of racial group identification on nursing home placement (NHP) for individuals with dementia before and after adjusting for the possible mediating effects of the caregiving context as defined by stressprocess variables in 215 caregiver/care recipient dyads. Method: Demographics, problem behaviors, self-care impairment, and caregiver appraisal, social support, psychological well-being, and coping were used to prospectively predict Time to NHP. Results: Race was a significant predictor of NHP with African American care recipients placed significantly slower than White care recipients. Race remained a significant predictor of Time to NHP after controlling for other variables that showed independent association with Time to NHP and stress-process variables. Discussion: Findings suggest that stress-process variables are critical factors in Time to NHP; however, these variables do not explain fully the difference in Time to NHP seen in White and African American care recipients. Keywords:

stress process; problem behaviors; appraisal; culture

AUTHORS’ NOTE: This research was supported by two grants from the National Institute on Aging (NIA) (2P01AG06569 and K01AG00722). Please direct all correspondence or reprint requests to Alan B. Stevens, Ph.D., Director, Dementia Care Research Program, University of Alabama at Birmingham, 933 19th Street South, Suite 218, Birmingham, AL 35294-2041; e-mail: [email protected] JOURNAL OF AGING AND HEALTH, Vol. 16 No. 3, June 2004 375-397 DOI: 10.1177/0898264304264206 © 2004 Sage Publications

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Individuals with Alzheimer’s disease (AD) and related forms of dementia are at high risk for nursing home placement (NHP) (Montgomery & Kosloski, 1994; Pruchno, Michaels, & Potashnik, 1990; Salive, Collins, Foley, & George, 1993; Smith, Kokmen, & O’Brien, 2000). Similar to predictors in the overall population of older adults, age, income, marital status, and comorbidities have been shown to be significant predictors of placement for individuals with dementia (Gaugler et al., 2000; S. C. Miller, Prohaska, & Furner, 1999). It is not surprising that the characteristic functional limitations and problem behaviors exhibited by individuals with dementia, or “primary stressors” for family caregivers (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995), are strong and positive predictors of NHP (Gaugler et al., 2000; O’Donnell et al., 1992; Steele, Rovner, Chase, & Folstein, 1990). Beyond objective patient impairments and caregiving stressors, the caregiver’s reaction to behaviors exhibited by the individual with dementia and the caregiver’s overall well-being are potentially relevant to NHP. Cohen and colleagues (Cohen et al., 1993) found that the reported burden experienced by the caregiver and the caregiver’s selfreported reaction to memory and behavior problems predicted the caregiver’s desire to institutionalize as well as the actual institutionalization of individuals with dementia. A negative perception of the caregiving role may hasten placement. Caregivers reporting a higher number of health problems were more likely to seek NHP for their care recipient with dementia. Findings regarding the relationship between service utilization and NHP are mixed; however, greater assistance with activities of daily living (ADL) care and overnight respite may delay placement (Gaugler et al., 2000). These findings, however, were drawn from samples composed predominantly of White individuals with dementia and their family caregivers. Differences between African American and White caregivers in the rates of NHP have been widely recognized. Older adults identified as African American or Black have been found in most studies to be significantly less likely to be placed in a nursing home setting than older adults identified as White (V. L. Greene & Ondrich, 1990; Wolinsky, Callahan, Fitzgerald, & Johnson, 1992). Differential rates of placement among racial groups remain after controlling for variables that have shown independent associations with placement such as income,

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education, socioeconomic status (SES), use of informal care, age, and physical and cognitive functioning (Salive et al., 1993; Wallace, Levy-Storms, Kington, & Andersen, 1998). Recent findings have suggested that, despite changes in rates of placement by race over time, community-dwelling African American older adults are still much less likely to be placed in nursing homes over time (Hays, Pieper, & Purser, 2003). Stress-process models of family caregiving (Haley, Levine, Brown, & Bartolucci, 1987; Lazarus & Folkman, 1984; Pearlin, Mullin, Semple, & Skaff, 1990) have been used increasingly to study individual differences in response to caregiving and to investigate possible mechanisms for racial/ethnic differences in response to caregiving (Haley et al., 1996). Central to psychological theories of the stress process in caregiving is the concept of appraisal. Subjective appraisals of caregiving stressors have been found to be better predictors of outcomes (such as depression) for caregivers than the frequency of the objective stressors (Aneshensel et al., 1995; Haley et al., 1987; Vitaliano, Young, & Russo, 1991). Other variables included in stressprocess models include coping and social support. Although these models have been widely used to study outcomes such as caregiver depression (Schulz, Gallagher-Thompson, Haley, & Czaja, 2000), the extent to which racial differences in NHP may be explained by differences in caregiving stress and coping variables, including caregiver stressors, well-being, appraisal, coping, and social support has not been previously studied. African American and White caregivers report similar caregiving stressors, such as cognitive and functional declines in the individual with dementia, problem behaviors exhibited by the individual with dementia (e.g., hitting or striking loved ones), and significant reductions in the caregiver’s social activities. However, differential responses to the dementia caregiving role have been noted between African American and White caregivers. Generally, African American caregivers report less burden and fewer negative changes in life satisfaction than do White caregivers (Haley et al., 1995; B. Miller, Campbell, Farran, Kaufman, & Davis, 1995; Roth, Haley, Owen, Clay, & Goode, 2001). Haley and colleagues (1995) also found fewer depressive symptoms in African American caregivers compared to White caregivers and suggested that the noted differences in African

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American and White caregivers result from the mediating effects of the caregiver’s coping and appraisal skills as well as the caregiver’s level of activity and social support. More specifically, African American caregivers appraised problem behaviors of the individual with dementia as less stressful than White caregivers, and these appraisals of stressfulness severity associated with caregiving demands are consistently predictive of depression, and life satisfaction (Haley et al., 1996). The current study was designed to investigate racial differences in rates of NHP and the relative impact of caregiver stress-process variables on these differences. Using Cox proportional hazards models, we examined rates of NHP in a well-characterized sample of African American and White individuals with dementia. Key variables of the individuals with dementia and the caregivers were included to investigate the independent influence of racial group identification and variables drawn from a stress-process model of caregiving (Haley et al., 1996; Haley et al., 1987). Stress-process model variables included (a) demographic and economic characteristics of the individual with dementia and the family caregiver; (b) functional limitations and problem behaviors of the individual with dementia (primary stressors); (c) appraisal, coping, and social support characteristics of the caregiver (mediators); and (d) well-being of the caregiver. Because we have found in our previous research (Haley et al., 1996) that the mediating variables appraisal, coping, and social support account for some of the racial differences in depression among White and African American caregivers, we were interested in considering whether these mediating variables might also explain potential racial differences in NHP. Method PARTICIPANTS

We recruited 264 caregiver/care recipient dyads into the primary study, the University of Alabama at Birmingham (UAB) Family Caregiver Research Project. Each dyad was composed of a primary family caregiver and an individual with AD or other progressive dementia as


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diagnosed through the Memory Disorders Clinic using National Institute of Neurological and Communicative Disorders and Stroke (NINCDS) The Alzheimer’s Disease and Related Disorders Association (ADRDA) criteria. From this initial sample, 49 caregivers completed an initial interview and assessment but were lost to follow-up and therefore not included in the current study. An attrition analysis was conducted to determine whether caregivers who completed only one assessment differed from caregivers who continued to participate on demographic and psychosocial factors. Comparisons of baseline data revealed no significant differences between the two groups on measures of income, occupational prestige, age, depression, life satisfaction, or reported physical health. In addition, continuing caregivers and caregivers lost to follow-up did not differ significantly across dimensions associated with care recipient dementia severity: cognitive status, total memory and behavior problems, or impairments of self-care abilities. Chi-square analyses likewise revealed no statistically significant differences between the two groups for racial classification or relationship to the patient. Demographic and functional characteristics of the remaining 215 caregivers and 215 care recipients included in the analysis are shown in Table 1. Of the total sample, 37% (n = 80) was African American. Examination of potential differences between African American and White dyads indicated that care recipients were of similar age across race, although White caregivers were significantly older than African American caregivers. The groups did not differ on cognitive status of care recipient. As a group, African American families reported a significantly lower SES than Whites. African American caregivers in this sample were more likely to be women than men as compared to White caregivers. White caregivers were more likely to be spousal caregivers compared to African American caregivers. PROCEDURE

Eligible and consenting caregivers received a comprehensive battery of instruments administered in interview and questionnaire formats. After the initial assessment, follow-up assessments were carried out on an annual basis, and caregivers were contacted by telephone every 3 months to maintain up-to-date information on the care

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Table 1 Care Recipient (CR) and Caregiver Demographic Characteristics

Variable

All Caregivers (N = 215)

CR age, M (SD) 74.4 (8.2) CR sex, n (%) Female 153 (71.2) Male 62 (28.8) CR Mini-Mental Status Exam scores, M (SD) 12.2 (8.7) Caregiver age, M (SD) 59.9 (13.8) Caregiver sex, n (%) Female 149 (69.3) Male 66 (30.7) Caregiver relationship to CR, n (%) Spouse 103 (47.9) Child 87 (40.5) Other 25 (11.6) Family socioeconomic status (Nam-Powers index), M (SD) 65.7 (21.9)

African American White Caregivers Caregivers (n = 80) (n = 135)

p a

75.5 (8.5)

73.7 (8.0)

.12 b .11

62 (77.5) 18 (22.5)

91 (67.4) 44 (32.6)

11.5 (8.7) 56.7 (13.9)

12.6 (8.7) 61.7 (13.4)

63 (78.7) 17 (21.3)

86 (63.7) 49 (36.3)

25 (31.3) 41 (51.3) 14 (17.5)

78 (57.8) 46 (34.1) 11 (8.2)

< .002b b .013 .039b

55.2 (23.1)

72.2 (18.5)

< .0001a

.41a .009a b .021

a. Independent sample t test. b. Pearson chi-square test.

recipient and caregiver. All assessment procedures were approved and monitored by the University of Alabama at Birmingham Institutional Review Board for Human Use. MEASURES

Demographic and descriptive information. Caregivers selfreported information for a number of demographic variables, including self-identification of primary racial group, relationship to the care recipient, age, and education. The Nam-Powers Index of Occupational Status was used as a measure of SES (Nam & Terrie, 1988). Caregivers reported their own current (or previous, if retired) occupation and that of their spouse. These occupations were then scored for occupational prestige on a scale from 0 to 100. For married caregivers, the higher score of the couple was used as an index of family SES in the analysis. Other indicators of the caregiver’s economic resources


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such as income, education, or occupation have proven less informative in previous studies because of the high percentage of retiree and female caregivers (Haley et al., 1995). These indicators can be especially biased among older caregivers who played supportive roles within the home while spouses achieved high occupational status. The Mini-Mental State Examination (MMSE) score was obtained from care recipient records at the Memory Disorders Clinic and used as a measure of cognitive functioning (Folstein, Folstein, & McHugh, 1975). Scores on the MMSE exhibit a range of 0 to 30, with higher scores indicative of better cognitive functioning. Primary stressors. Three instruments were used to assess the daily living skills and challenging behaviors of the individual with dementia. The Activities of Daily Living Scale (ADLS; Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963) was used to assess the care recipient’s ability to perform essential self-care tasks such as dressing, feeding, and bathing. The Instrumental Activities of Daily Living Scale (IADLS; Lawton & Brody, 1969) was used to measure caregiver assessment of care recipient performance across a range of higher level self-care behaviors, including shopping for groceries, cooking, household chores, and managing finances. Similar to prior examination of this database, the ADLS and IADLS scores were then summed to form a total self-care impairment score (α = .88) (Haley et al., 1995). The Memory and Behavior Problems Checklist (MBPC; Zarit & Zarit, 1988) was used to measure the severity of dementia-related behavioral problems, including memory trouble, wandering, hiding things, and dangerous or embarrassing behavior. The 33-item measure was scored for the number of problems in the past week (α = .86) (Haley et al., 1995). Caregiver stressfulness appraisal. For each item of the ADLS, IADLS, or MBPC endorsed by the caregiver, caregivers were asked to complete an additional Likert-type rating scale. Caregivers were asked to rate their perception of the stressfulness of each problem using a scale ranging from 0 (not at all stressful) to 3 (extremely stressful). Mean appraisal ratings were calculated by computing the sum of all stressfulness ratings divided by the number of endorsed problems.

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For example, caregivers who indicated that only one memory or behavior problem (e.g., wandering) had occurred and who rated the perceived stressfulness of that problem as a 3 received a mean memory and behavior problem appraisal score of 3. Caregiver psychological well-being. Two instruments were used to measure psychological distress among family caregivers: the Center for Epidemiological Studies–Depression Scale (CES-D; Radloff, 1977) and the Life Satisfaction Index (LSI-Z; Wood, Wylie, & Sheafor, 1969). The widely used CES-D is a 20-item self-report measure of depression with good evidence for reliability and validity for detecting depression among older adults (Lewinsohn, Seeley, Roberts, & Allen, 1997). The LSI-Z is a 13-item self-report measure of general morale and life satisfaction that has demonstrated validity with older adult populations (Haley et al., 1987). Social support and activity. Caregivers were asked to describe their social network and the help received from the network in six different areas on the 12-item Social Support Questionnaire, Short Form– Revised (SSQSR; Sarason, Sarason, Shearin, & Pierce, 1987). Caregivers were also asked to list each individual they could count on for support and to rate their satisfaction (1 = very dissatisfied to 6 = very satisfied ) with the level of support they received in each of the six areas. The six areas included people they could count on to be dependable, to help them feel more relaxed when under pressure, to accept them totally, to help them feel better when they are generally down in the dumps, and to console them when they are very upset. Separate scores were obtained for the total number of social supports named and the level of satisfaction with the social support. Coping strategies. The Coping Response Inventory (CRI; Moos, 1988) was used to assess caregiving coping responses. Caregivers were asked to rate their reliance on each of the coping strategies on a 4point scale ranging from 0 (not at all) to 3 (fairly often). The CRI assesses four domains of approach coping (Logical Analysis, Positive Reappraisal, Seeking Guidance and Support, and Problem Solving), and four avoidance coping domains (Cognitive Avoidance, Seeking


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Alternative Rewards, Acceptance and Resignation, and Emotional Discharge). DATA ANALYSIS

Cox proportional hazards models were used to analyze predictors of nursing home placement. The PHREG procedure in SAS was used to calculate proportional hazard models (Allison, 1995). Time to NHP, the dependent variable, was calculated as the number of days between entry into the study and eventual placement in a nursing home. For families that had not placed the care recipient in a nursing home at the time of data analysis or who declined further participation in the study, Time to NHP was censored at the date of last participation in the study. Death of the care recipient prior to NHP also resulted in censoring at the date of last participation. Caregiver and care recipient data from the initial or baseline assessment were analyzed as predictors of NHP. Although changes from the initial assessment were tracked in annual longitudinal assessments for some targeted care recipient and caregiver variables, these change scores were not examined in our survival analysis models because of limited change on many variables and sample size concerns. For example, the rate of problem behaviors did not show a steady increase over time. Rather, longitudinal tracking of care recipient problem behaviors, as reported by the care recipient’s caregiver, suggest a varied pattern of change of a 2-year period depending on the severity of the care recipient’s cognitive impairment. Care recipients classified as having mild to moderate cognitive impairment at the initial assessment showed an increase in problem behaviors over a 2-year period, while individuals with severe cognitive impairments at the initial assessment showed a decrease in the number of problem behaviors (McCarty et al., 2000). Predictor variables of interest were race (self-identification as either African American or White), care recipient and caregiver demographic characteristics, and variables represented in the stressprocess model of caregiving. Stress-process variables included (a) primary stressors (i.e., memory and problem behaviors and self-care impairments exhibited by care recipients); (b) caregiver stressfulness appraisal (i.e., subjective burden related to problem behaviors and

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self-care impairment); (c) psychological well-being of caregiver (i.e., depression symptomatology and life satisfaction); (d) social support available for the caregiver (i.e., total amount of social support and satisfaction with social support); and (e) coping strategies (i.e., approach and avoidance coping behaviors). After examining the individual influence of each variable on Time to NHP, the effect of race on NHP rate was examined in proportional hazards models controlling for variables that either demonstrated a significant predictive influence on NHP rate or that had been shown to differ significantly between White and African American caregivers. Results As published in previous reports of the UAB Family Caregiver Research Project (Haley et al., 1996; Haley et al., 1995), African American and White caregivers included in this sample differed significantly on a number of caregiving and psychosocial well-being variables commonly represented in stress-process models of caregiving. Care recipients, however, were remarkably similar in their demographic and clinical characteristics. Descriptive statistics for each caregiver variable by racial group are presented in Table 2. These data form the base for exploration of racial difference in rates of NHP. COX PROPORTIONAL HAZARD MODELS

Univariate survival analysis indicated that rates of NHP were significantly lower across time for African American care recipients compared with White care recipients (χ2 = 7.10, p = .008; Hazard Ratio = .433). Figure 1 shows the unadjusted survival curves for the 80 African American and 135 White care recipients. Survival curves indicate the predicted proportion of care recipients remaining in the community (i.e., not placed in a nursing home) as a function of the number of weeks since entry into the study. Since the beginning of the study in 1990, 59 recipients (27%) were placed. Thirteen (13) of the placed individuals were African American and 46 were White. Among the 80 African American care recipients, 10 were placed in a nursing home within the first 100 weeks of participation in the study, 12 were placed


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Table 2 Descriptive Information on Stress-Process Variables by Racial Group African American Caregivers (n = 80)

All Caregivers (N = 215) Variable Memory and behavior problems Self-care impairments Stressfulness appraisals of memory and behavior problems Stressfulness appraisals of self-care impairments Depression (CES-D) Life satisfaction (LSI-Z) Size of social support network Satisfaction with social support Approach coping Avoidance coping

White Caregivers (n = 135)

M (range)

SD

M

SD

M

11.4 (0 to 26) 10.0 (0 to 14)

5.3 3.3

10.9 9.7

5.8 3.5

11.7 10.2

1.07 (0 to 2.9)

.7

.78 (0 to 3) .7 15.0 (0 to 47) 9.8 15.9 (0 to 26) 6.4 18.1 (0 to 54) 10.4 5.4 (1.3 to 6) .9 44.4 (0 to 69) 11.7 25.1 (0 to 52) 10.4

.88

.6

.62 .6 12.0 8.5 16.0 6.2 17.2 11.2 5.4 .9 42.4 12.6 22.4 10.1

SD

p

4.9 3.2

.2510 .2632

.6

.0015

.87 .6 16.7 10.2 15.8 6.6 18.6 9.9 5.4 .9 45.6 11.0 26.8 10.3

.0060 .0006 .8550 .3402 .6935 .0543 .0023

1.18

Note. CES-D = Center for Epidemiological Studies-Depression Scale; LSI-Z = Life Satisfaction Index.

within the first 200 weeks, and 13 were placed within the first 300 weeks of the study. Comparatively, among the 135 White care recipients, 35 were placed within the first 100 weeks of participation, 41 were placed within the first 200 weeks, and 45 were placed within the first 300 weeks of the study. The survival curves in Figure 1 reflect the placement differences and also take into account those care recipients who were not placed but censored because of death or dropout at some point during the study. Following the examination of race on Time to NHP, individual Cox proportion hazard models were conducted for additional care recipient and caregiver demographic variables and for each stress-process variable reported in Table 2. This step in our analytic plan was conducted to identify variables other than race that were significant predictors of Time to NHP. This was necessary to reduce the number of covariates examined in our final analytic step. Hazard ratio and chisquare statistics for each variable are reported in Table 3. Among the additional demographic variables, family SES and care recipient age were significant predictors of Time to NHP. As expected, higher SES

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Rate of Nursing Home Placement

.6

.5

.4 .3

.2

RACE .1

WH AA

0.0 0

52

104

156

208

260

312

Weeks to Nursing Home Placement Figure 1. Cox regression survival analysis for nursing home placement.

and greater care recipient age were associated with a shorter Time to NHP. Two stress-process variables related to appraisal demonstrated a significant influence on Time to NHP, stressfulness appraisal of (a) self-care impairment and (b) memory and behavior problems. This finding suggests that caregivers who appraised memory and behavior problems as stressful placed the care recipients at a faster rate than caregivers who reported a more benign appraisal. The hazard ratio associated with the total number of memory and problem behaviors exhibited by the care recipient would suggest that greater numbers of memory and problem behaviors were associated with a shorter time to placement. RACIAL DIFFERENCES IN NHP AFTER INDIVIDUALLY CONTROLLING FOR RELEVANT DEMOGRAPHIC AND STRESS-PROCESS COVARIATES

The final step in our analytic plan examined the influence of race on NHP while controlling for other variables of interest. Because of the


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Table 3 Cox Proportional Hazard Ratios and Chi Squares Indicating the Unadjusted Predictive Influence of Demographic and Stress-Process Variables on Nursing Home Placement Variable

Hazard Ratio

CR race CG age CR age Cognitive status of CR CG relationship to CR (spouse vs. all others) Family socioeconomic status Memory and behavior problems Self-care impairments Stressfulness appraisal of memory and behavior problem Stressfulness appraisal of self-care impairment Depression (CES-D) Life satisfaction (LSI-Z) Size of social supports network Satisfaction with social support Approach coping Avoidance coping

.433 1.008 1.041 .996 .602 1.018 1.058 1.033 1.544 1.558 1.005 1.012 1.001 1.109 .997 1.011

2

p Value

7.10 .61 6.37 .05 3.61 6.09 5.03 .65 4.527 5.10 .17 .33 .01 .45 .09 .81

.003 .44 .012 .82 .058 .014 .025 .42 .033 .024 .68 .57 .91 .50 .77 .37

Note. CES-D = Center for Epidemiological Studies-Depression Scale; LSI-Z = Life Satisfaction Index; CR = care recipient; CG = caregiver.

limited number of individuals in our sample who were actually placed in the nursing home, models examined the effect of race while controlling for a single variable. Care recipient or caregiver variables that showed either significant differences between African American and White dyads (Table 2), or were significant predictors of time to placement (Table 3) were entered as covariates. The values in Table 4 represent the effects of race on Time to NHP after controlling for the mediating factor listed in the covariate column. As reported above and shown in Table 3, the hazard ratio for the unadjusted survival analysis of race on Time to NHP was 0.443 (χ2 = 7.10, p = .008). As demonstrated by the chi-square statistic, race remained a significant predictor of Time to NHP in each of the eight models. Care recipients identified as White were placed significantly sooner than care recipients identified as African American in all models.

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Table 4 Effect of Race on Time to Nursing Home Placement After Controlling for Relevant Demographic and Stress Process Covariates Influence of Race After Adjustment Covariate

Hazard Ratio

Family socioeconomic status Care recipient age Caregiver relationship to care recipient (spouse vs. all others) Memory and behavior problems Stressfulness appraisal of memory and behavior problems Stressfulness appraisals of self-care impairments Depression Avoidance coping

2

χ

p Value

.478 .389

4.3649 8.8637

.0367 .0029

.341 .447 .520 .493 .422 .441

11.0808 6.546 4.121 4.8465 7.1654 6.577

.0009 .0105 .0424 .0277 .0074 .0103

Discussion Existing studies suggest that characteristics of an individual’s functional status, cognitive ability, physical health, and overall SES are independently associated with NHP (Gaugler et al., 2000; S. C. Miller et al., 1999; Salive et al., 1993). Racial or ethnic group identification has also been consistently shown to be a significant predictor of NHP in samples of older adults who do not have dementia (Hays et al., 2003; Wolinsky et al., 1992). This study examined the influence of racial group identification on NHP after adjusting for the possible mediating effects of the caregiving context as defined by stressprocess variables. A diverse sample of well-characterized individuals with dementia and their family caregivers provided a comprehensive data set, which allowed characteristics of the care recipient and the caregiver to be considered when investigating the relative risk of NHP. Replicating findings from heterogeneous samples of older adults, survival analysis techniques used in the current study suggest that racial group identification is a significant predictor of NHP in a sample of individuals with dementia. In this sample composed of 37% African American participants, White care recipients with dementia were placed at nearly 2.5 times the rate at which African American care recipients were placed. Other factors were also significant predictors of NHP. Higher SES of the caregiving family and greater care


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recipient age increased the likelihood of NHP. This finding is consistent with that of Gaugler and colleagues (2000), who found higher levels of income and greater care recipient age to be associated with more rapid NHP of persons with dementia. These findings differ, however, from previous reports by Cohen and colleagues (1993) who did not find SES-related variables (e.g., income, education) or care recipient age to influence Time to NHP. The relationship shared by care recipient and caregiver appeared to have a slight influence on Time to NHP in our sample, with nonspousal caregivers placing care recipients at a quicker rate than of spousal caregivers. Other reports in the caregiving literature suggest that the relationship existing prior to the caregiving role may influence the caregiver’s desire to place the care recipient (Cohen et al., 1993) as well as the caregiver’s use of in home formal support services, level of depressive symptoms, and expressed burden related to caregiving (Corcoran, 1992; Montgomery & Kosloski, 1994). It is of special note that the lower rates of NHP in African American caregivers were found despite the fact that White caregivers were almost twice as likely to be cared for by a spouse. Behavioral and functional characteristics of the individual with dementia also affected NHP rates. The hazard ratio associated with the number of memory and problem behaviors suggests that greater incidence of these behaviors reduces the Time to NHP. Observations suggestive of problem behavior leading to early NHP are common. Yet the literature is inconclusive. Fisher and Lieberman (1999) found no relationship between the care recipient characteristics and NHP. Previous reports found problem behaviors (O’Donnell et al., 1992; Steele et al., 1990), nocturnal disruptive behavior, and functional limitations (Severson et al., 1994; Smith et al., 2000) to be significant predictors of NHP in individuals with dementia. Variations in the frequency or intensity of problem behaviors may also affect NHP (i.e., a sudden increase in problem behaviors may precipitate NHP); however, this issue is difficult to examine given the inconsistent patterns of behavior exhibited by persons with dementia (McCarty et al., 2000). In addition to the findings surrounding objective severity of impairment, good evidence was found for the association between the caregiver’s appraisal of the stressfulness of self-care and functional abilities impairment as well as appraisals of the stressfulness of memory

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and problem behaviors on the rate of NHP. Appraisal of the stressfulness of care recipient behaviors can be used as a marker of caregiving burden. In the current study, appraisal of care recipient behavior as bothersome predicted a decreased Time to NHP. These findings suggest that the caregiver’s appraisal of the caregiving situation, including the behaviors of the care recipient, are more directly related to Time to NHP than the actual behaviors of the care recipient or the caregiver’s psychosocial well-being. Likewise, caregiving burden related to the provision of help with self-care activities was associated with a quicker rate of NHP. The finding that stressfulness appraisals are significant prospective predictors of placement is consistent with stress-process theories that emphasize the relative importance of subjective reactions and appraisals, above and beyond the objective impairments or stressors faced by the caregiver (Haley et al., 1987; Schulz et al., 2000). However, as noted in detail below, the stressprocess model is insufficient to fully explain racial differences in placement, suggesting the need for incorporation of additional culturally relevant variables to the model. The significant effects of SES, care recipient age, total number of memory and behavior problems, and caregiver’s stressfulness appraisal of self-care impairment, and of memory and problem behaviors on NHP rates suggest that the unadjusted racial differences in Time to NHP displayed in Figure 1 may be attenuated by controlling for these variables. The race effect on NHP remained statistically significant, however, after statistically adjusting for each of these variables that were independently associated with Time to NHP. In particular, the hazard ratio associated with the relationship (spouse vs. all others) covariate suggested that racial identification had a primary and robust effect on NHP. Likewise, stress-process model variables that are known to differ between African American and White caregivers failed to eliminate the race effect. The race effect remained significant after statistically adjusting for caregiver depression, coping responses, stressfulness appraisal of self-care impairments, and surprisingly, stressfulness appraisal of memory and problem behaviors. For example, after controlling for the caregivers’ stressfulness appraisals of memory and problem behaviors, the hazard ratio associated with the race variable


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suggested that White care recipients continued to be placed at twice the rate of African American care recipients. Caregiver stressfulness appraisal of memory and problem behaviors, a key variable in the stress-process model, was found to mediate racial differences in life satisfaction and depressive symptoms in caregivers (Haley et al., 1996). This variable did not, however, significantly mediate the race effect on Time to NHP. Overall, these findings suggest that racial differences in rates of NHP cannot be explained by demographic characteristics of the caregiving household, or the multiple care recipient and caregiver variables captured within the stress-process model. In most models tested in the current study, the hazard ratios showed that White care recipients were placed at approximately twice the rate of African American care recipients, suggesting the existence of important cultural and/or contextual factors not accounted for in the current study and not represented in traditional stress-process models of caregiving. Culturally specific responses to caring for a family member with dementia are undoubtedly present and are, most likely, in response to the diverse contexts in which caregiving occurs (Dilworth-Anderson & Anderson, 1994). Dilworth-Anderson and colleagues (DilworthAnderson, Williams, & Gibson, 2002) suggested that culturally relevant variables are missing from most theoretical models of the caregiving experience. More specifically, they called for the use of anthropological and qualitative approaches for capturing cultural-historical variables such as values, beliefs, and identities. These authors went on to add that the addition of these variables to theoretical models “allow for defining and giving meaning to certain concepts (e.g., burden and coping) from a cultural frame of reference” (Dilworth-Anderson et al., 2000, p. 267). Two prominent cultural issues given for the differential rates of NHP in White and African American care recipients are (a) caregiving expectations and (b) distrust of formal health care systems (Dilworth-Anderson, Williams, & Cooper, 1999; Fox, Hinton, & Levkoff, 1999). Rosenthal (1986) and others (Dilworth-Anderson et al., 1999) have suggested that a cultural norm exists in the African American community in which caregiving is an expected experience in adult development. African American women, in particular, are expected to care for

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older relatives and grandchildren. Furthermore, cultural caregiving expectations override severity of care recipient’s care needs (e.g., bedbound state) and the personal implications of the caregiving situation (e.g., lost income due to caregiving). From this perspective, African American caregivers are assumed to conform to the cultural norm of providing care “at all cost” rather than turning to formal care services. In place of formal care services, African American caregivers are hypothesized to receive informal support through social contacts. Evidence of greater informal social supports in the African American community, however, has not been empirically established (R. L. Greene, Jackson, & Neighbors, 1994). In fact, African American and White caregivers represented in this article did not differ in size of the social support network or satisfaction with social support. In an anthropological article of the experiences of African American caregivers, Fox and colleagues (1999) documented numerous incidences in which African American caregivers declared extended family members to be unsupportive. These observations do not rule out the presence of personal and cultural supports that strengthen the ability of African American caregivers to provide care in the home. Regardless, our findings suggest that African American caregivers are resolute in their desire and ability to provide in-home care for care recipients. As a consequence of historical events and personal life experiences, African Americans may experience less confidence than Whites in formal support services, particularly nursing homes. African American caregivers as a whole may have experienced significant incidents of discrimination when seeking and obtaining health care services. In addition, some evidence suggests that White and African American individuals experience differential levels of health care (Geiger, 1997). Service providers may also be insensitive to cultural norms such as the intimate involvement of fictive kin in care delivery. African American families may feel especially vulnerable to discrimination in nursing home care because residents with dementia are characterized by high levels of self-care impairment and the need for 24-hr supervision. Moreover, caregivers are generally not able to be present for the majority of care provision, preventing routine monitoring of care delivery to the resident with dementia.


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LIMITATIONS

Numerous other factors related to the care recipient, caregiver, and the cultural context of caregiving are potentially related to NHP but were not available for analysis in the current study. Given the unexplained racial differences in NHP found in the current study, additional information regarding the cultural context of caregiving is needed. More specifically, caregivers’ views on the cultural expectations surrounding care and identification of the diverse sources of support (e.g., spiritual, cultural, family) available to caregivers are essential to fully understand the influence of race on NHP. Information regarding use of formal services by the caregiver would add valuable information to understanding differential NHP rates. Caregiver variables in the current study focused exclusively on negative outcomes associated with caregiving, neglecting positive feelings caregivers may experience in their caregiving role. Some caution in the interpretation of this report must also be noted. Although 215 dyads were represented in the current study, a relatively small number of individuals (27% of the total sample) were placed in the nursing home during their active participation in the current study. Most of these placements occurred within the first 100 weeks of participation. More interesting, 94 care recipients died during the course of this study, and 66 of these (70%) died while still residing in the community. African American care recipients were significantly more likely than White care recipients to remain in family care living situations until death (88% vs. 64%, respectively, p < .03). FUTURE RESEARCH

Caregivers consistently report NHP to be a significant point of stress. This research combines with a wealth of previous reports to highlight the complexity of predicting NHP. Additional research is needed to explore the racial differences not explained by the measures included in this database, including the need for qualitative studies to identify relevant variables that can be systematically measured in future caregiving studies. These findings also call for additional interventions to assist caregivers of care recipients with dementia in their caregiving roles and in the nursing home transition process.

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Caregivers’ stressfulness appraisals of memory and problem behaviors should be given special attention in the field of caregiving intervention research. The current study suggests that interventions aimed at assisting caregivers in the cognitive/affective response to memory and problem behaviors could result in a reduced risk of placement. It is important to note that the cognitive/affective appraisal process of memory and problem behaviors appears to be more important than the actual occurrence of memory and problem behaviors. Thus, interventions aimed at cognitive restructuring of the caregivers’ interpretations of behaviors should be promoted. Conversely, caregiver feelings of depression and psychosocial well-being, although important outcomes in caregiving research, appear to be unrelated to NHP of the care recipient. Delaying or preventing NHP of individuals with dementia through effective caregiving interventions would result in considerable savings in private and public funds spent on long-term care. Psychosocial intervention can substantially delay nursing home placement (Mittelman, Ferris, Shulman, Steinberg, & Levin, 1996), although the mechanism through which intervention slows placement is not well understood. Our results suggest that caregiver appraisals deserve special attention in understanding the mechanism through which caregiver interventions delay placement. CONCLUSIONS

Characteristics of the care recipient/caregiver dyad and caregiving context examined in the current study confirm the importance of considering factors of both the individual with dementia and the family caregiver in studies of NHP. The race of the dyad was a strong predictor of Time to NHP. White care recipients were placed significantly sooner than African American care recipients. The association between race and Time to NHP was relatively unchanged by numerous covariates that controlled from demographic characteristics of the care recipient, SES of the caregiving family, behavioral and functional status of the care recipient and caregivers’ subjective feelings of burden, depression and coping.


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