Journal of Gerontology: SOCIAL SCIENCES 1990. Vol. 45, No. 6. S259-266
Copyright 1990 by The Geronmlogical Society of America
Predictors of Institutionalization Among Alzheimer Disease Victims With Caregiving Spouses Rachel A. Pruchno, J. Eileen Michaels, and Sheryl L. Potashnik Philadelphia Geriatric Center.
ACCORDING to statistical projections, in the year 2000 •**• the dependent aged population will number close to 6.5 million people, more than one third of whom will live in nursing homes (Weissart, 1985). These numbers represent a doubling of the current nursing home population. Although at any one point in time 4 to 5 percent of people over the age of 65 reside in nursing homes, Kastenbaum and Candy (1973) and Palmore (1976) estimate that the cumulative chance of being placed in an institution before death is greater than 20 percent. More recently, Liang and Tu (1986) estimated that the lifetime risk of institutionalization is 29.7 percent, with the possibility of entering a nursing home increasing to 45.6 percent by age 90. Institutionalization is not a random event; rather, institutionalization has been associated with: demographic characteristics such as being unmarried, poor, female, White, not having children, being older, and living alone (Dolinsky and Rosenwaike, 1988; McCoy and Edwards, 1981; Palmore, 1976; Soldo, 1981; Townsend, 1965; Vicente, Wiley, and Carrington, 1979; Wolf, 1983); the mental and physical health of the patient, including abilities to perform activities of daily living, score on a mental status exam, and presence of aberrant behaviors (Knopman et al., 1988; McCoy and Edwards, 1981); and with characteristics of caregivers, including relationship of caregiver to impaired person (e.g., child vs spouse) and caregiver burden or strain (Colerick and George, 1986). Most elderly people prefer to maintain independent households (Soldo, 1981); even in the face of chronic disability, institutionalization is viewed as a last resort. The decision to relinquish care to professionals is difficult due to the intense and often exclusionary bond which the caregiver has toward the patient (Poulshock and Deimling, 1984), and this is especially true when the caregiver is a spouse. Although impaired people who are married have one of the lowest rates of institutionalization, between 1977 and 1985 the percentage of people living with a spouse just prior to institutionalization increased from 5.5 to 12.5 percent (U.S. HEW, 1979; HHS, 1989). The analyses that follow focus on married victims of Alzheimer's disease. Predictors of both the caregiver's desire to institutionalize as well as actual
institutional placement will be identified based on a theoretical model generated from current literature and family stress theory. Theoretical Model The conceptual framework for predicting a spouse's desire to institutionalize as well as actual institutionalization was developed by integrating empirical findings from the more general arena of risk factors for institutionalization with relevant theoretical considerations from the family stress literature. Four sets of variables are proposed. First are demographic factors. Demographic factors associated with institutionalization are: high socioeconomic status (Greenberg and Ginn, 1979; Kraus et al., 1976; Vicente, Wiley, and Carrington, 1979), being female (Kane and Matthias, 1984; Kraus et al., 1976), and advanced age (Morris, Sherwood, and Gutkin, 1988; Vicente, Wiley, and Carrington, 1979). The role of children is unclear. Morris, Sherwood, and Gutkin (1988) found no relationship between number of children and institutional placement, while Soldo (1982) reports that absence of at least one daughter may indicate a greater risk of institutionalization at a lower level of disability. Greenberg and Ginn (1979), on the other hand, found that number of children was not related to risk for institutionalization. Second, from theories of family stress (Hill, 1949; McCubbin and Patterson, 1982), characteristics of impaired spouses or "stressors" are considered. These are conceptualized as including patient symptoms such as forgetful behaviors, asocial characteristics, disoriented tendencies, and incontinence. Investigators consistently report that problems with activities of daily living, mental disorientation, number of medical conditions, incontinence, hospitalizations within the previous year, and use of ambulatory aids increase the risk of institutionalization (Branch, 1984; Branch and Jette, 1982; Greenberg and Ginn, 1979; Knopman et al., 1988; Kraus et al., 1976; McCoy and Edwards, 1981; Shapiro and Tate, 1985). The role played by stressors in predicting institutionalization, however, may be more complex than these data indicate. Colerick and George (1986), for example, report that S259
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A theoretical model predicting "desire to institutionalize" and actual institutionalization was developed and tested on a sample of 220 persons caring for a demented spouse. Significant predictors of "desire to institutionalize" include age and education of caregiver, spouse's forgetful behaviors, ADL tasks done by the caregiver, medications taken by the caregiver, services used, and quality of relationship with spouse. Predictors of actual institutionalization are desire to institutionalize, length of time spent as a caregiver, religion, uplifts, andforgetful behaviors of the impaired spouse.
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institutionalization. Morycz (1985) reports that 38 percent of the variance contributing to the desire to institutionalize was accounted for by four predictor variables: patient's marital status (unmarried), patient's living arrangements (alone), the physical labor required by patient functional deficits, and the strain experienced by the caregiver. Although research has documented the discrepancies between attitudes and actual behavior, Morycz (1985) found that the desire to institutionalize was significantly associated with actual institutionalization (r = .53,/; < .001). METHODS
Sample. — Data for these analyses derive from a longitudinal study of 315 persons who, at intake to the research project, were providing care in the community to a spouse who had been diagnosed with Alzheimer's disease or a related disorder. Respondents were identified through public service announcements, and contacts with such community gatekeepers as synagogues, churches, community service organizations, hospitals, and support groups. Respondents were primarily female (67.9%), White (86%), and ranged in age from 45 to 94 (M = 70.2). They had been providing care to their spouse for a mean of 2.8 years (range 1 month to 20.3 years). Of the 315 respondents, 44 percent were Protestant, 29 percent Catholic, and 25 percent Jewish, with the remaining 2 percent not expressing religious affiliations. Approximately one third (35%) of the sample had not completed high school, 28 percent had completed high school, and 37 percent had more than a high school education. Annual income ranged from $5,000 per year to more than $50,000 (median of $17,500). Respondents received a baseline interview and were reinterviewed one year later. Interview data for the analyses that follow derive only from the baseline assessment of the 220 respondents who participated in both the baseline and one-year follow-up. This procedure was followed in order to assure that predictors were, in fact, antecedents rather than consequences of institutionalization. Status at one year after baseline was coded as community (1) versus institutionalization (0). Close to half the original sample (N = 152) continued to provide care to their spouse in the community and participate in the follow-up interview. Within the oneyear period, 21.6 percent of the original sample (n = 68) institutionalized their spouse and also participated in a follow-up interview. The remaining 95 cases not used in the analyses that follow include caregivers who dropped out of the study (n = 72) or those whose spouse died at home (/? = 23) prior to the one-year follow-up. Chi-square and Mests comparing caregivers included in this set of analyses with those not included indicated that the former group was more likely to be better educated (x2 = 12.85, p < .05) and younger (/ = 3.38, p < .001) than the latter. There were no differences between the groups on gender, race, religion, income, or length of time person had been a caregiver. As shown in Table 1, there were no differences between those respondents who institutionalized their spouses and those who continued to provide care in the community in terms of gender, age, income, or number of children. Caregivers who continued to provide care in the community had
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physical characteristics of the patient, including length of illness and severity of symptoms, do not emerge as significant predictors of institutionalization. Similarly, Zarit, Todd, and Zarit (1986), studying 64 spouse caregivers, found that neither mental status score nor the total frequency of memory and behavior problems differed significantly at Time 1 between those who ultimately placed their spouse and those who did not. The third set of predictors, caregiver resources, includes both personal and social resources available to the caregiver. It is expected that the poorer the physical and mental health of the caregiver, the greater will be the likelihood of placement of the spouse. Colerick and George (1986) found that the caregiver's use of psychotropic drugs was associated with greater likelihood of nursing home placement, but that self-rated health, stress symptoms, overall life satisfaction, satisfaction with leisure, and perceived economic status were not significant discriminators. Research regarding the role of social resources as predictors of institutionalization has yielded contradictory evidence. Colerick and George (1986) report that caregivers who institutionalize their relative had greater knowledge of services at baseline than did caregivers who did not institutionalize their relative. They report that there was no statistically significant difference in use of services between the two groups at baseline. On the other hand, Hicks et al. (1981), found that patients who received coordinated home care services through Project Triage had higher subsequent rates of long-term care in institutions than members of a matched comparison group who did not get services. Also, McCoy and Edwards (1981), using data from the 1973 Survey of Low-Income Aged and Disabled to predict 1974 institutionalized status among elderly welfare recipients, found that receipt of services was associated with greater probability of institutional placement. However, in a longitudinal study, Nielson, Blenkner, and Bloom (1972) found that elders who received home-care services were significantly less likely to be institutionalized than those who did not receive services. The role of family helpers is also unclear as a predictor of institutionalization. Lowenthal, Berkman, and Associates (1967) report that placement was associated with a breakdown of the family support system. Similarly, Barney (1977) found that individuals lacking strong social supports are more likely to be institutionalized. Shapiro and Tate (1985), on the other hand, found that frequent contact with relatives was a significant predictor of placement within a 7-year period. The fourth set of variables consists of caregivers' perceptions of the burden or stress associated with the caregiving situation. It is expected that the more burdened caregivers feel, the more likely they are to institutionalize a spouse. Colerick and George (1986) found that caregivers who institutionalize an impaired relative were more likely to feel stressed at baseline and have more competing role responsibilities (i.e., work) than those who did not. It is expected that these four sets of variables contribute to the prediction of both the desire to institutionalize a spouse as well as actual institutionalization. Desire to institutionalize an older relative has received less attention than actual
INSTITUTIONALIZATION OF SPOUSES
Table 1. Mean Group Comparisons Community (#i = 152)
Institution Statistic
(/? = 68) 2
Gender (female)
64.5%
76.5%
X = 2.59
Caregiver Age
69.2
69.1
/ = - .09
26.5% 32.4% 32.4% 4.4% 4.4%
Income Less than $10,000 $10,000-$ 14,999 $15,000-$ 19,999 $20,000-$24,999 $25,000-$34,999 $35,000-$49,999 $50,000 or more
8.7% 24.0% 22.07o 11.3% 14.0% 10.7% 9.3%
9.1% 24.2% 21.3% 7.6% 19.7% 12.1% 6.1%
Number of children Stressors Forgetful behaviors Asocial behaviors Disoriented behaviors Incontinence ADL caregiver help IADL caregiver help Resources Number of caregiver illnesses CES-D Caregiver medications Informal help Service use Relationship with spouse Perceptions Burden Uplifts Desire to institutionalize
Measures
= 2.28
X2 = 9.05* 48.0% 30.9% 18.4%
42.6% 22.1% 35.3%
2.99
2.02
/ = -3.02**
2.19
2.51
t = 1.33
13.74 5.84 2.53 .57 11.77 20.33
17.48 7.41 3.90 .88 13.39 21.22
t / t t t /
= = = = = =
3.83** 2.32* 2.48* 2.73** 2.64** 1.95
2.45 14.93 .38 .70 3.32 2.85
2.47 20.16 .53 .93 4.44 2.67
/ t / / t t
= = = = = =
.08 3.16** 2.06* 1.60 3.38** -1.27
32.75 10.07 1.86
35.82 7.89 3.36
t = 2.86** / = -3.54** / = 4.88**
*/>< .05;**p< .01.
either very low or very high levels of education, while those who institutionalized their spouse were more likely to have had either a high school education or some college. A greater proportion of people who institutionalized a spouse were Jewish, while more of those providing care in the community were either Protestant or Catholic. This trend suggested recoding religion to reflect religion as either Jewish (1) or non-Jewish (0). People continuing to provide care in the community had been caregivers longer at baseline than those who institutionalized their spouse. Although the sample is not truly representative of the population of spouse caregivers, it is nonetheless large and quite diverse with respect to potentially relevant demographic and social characteristics. It is likely that the sample
Stressors. — Severity of impairment on the part of the impaired spouse was measured by caregiver's assessment of the extent to which 34 behaviors characterized the spouse during the past month. The behaviors included cognitive, physical, affective, and social characteristics of Alzheimer's disease derived from the caregiver literature. The original list of more than 100 behaviors was shortened based on suggestions from a multidisciplinary team comprising neurologists, psychologists, anthropologists, and sociologists. The team sought to include behaviors characteristic of Alzheimer patients experiencing a wide range of disability. Each of the 34 behaviors was rated as occurring (1) never — the spouse is not impaired on this dimension; (2) 1-2 times a month; (3) 3-4 times a month; (4) 2-5 times during a week; or (5) almost daily. Behaviors were subjected to the three-phase model-testing procedure suggested by Horn and McArdle (1980). Results of these analyses are described in Pruchno and Resch (1989) and Potashnik (1988). Factors included: Forgetful behaviors (forgetting recent events, names of objects, caregiver's name, past events; inability to express self; not recognizing familiar others); Asocial behaviors (seeming sad, losing temper, verbal abuse, embarrassing caregiver, disrupting meals); and Disoriented behaviors (hearing and seeing things, getting lost in the house, confusing day and night). Cronbach coefficient alpha reliabilities for the scales ranged from .65 (Asocial) to .77 (Forgetful). Higher scores indicated more frequent behavioral symptoms. Incontinence scores describe people who are not at all incontinent (53.2%), incontinent of either bladder or bowel (26.8%), or incontinent of both bladder and bowel (20.0%). During the course of the interview, caregivers were asked to provide information about 15 tasks encompassing seven Activities of Daily Living (ADLs) and eight Instrumental Activities of Daily Living (IADLs). Caregivers were questioned about the impaired spouse's need for help with each task (using a "yes or no" format). Then, for each task for which help was required, the caregiver reported degree of help provided by him or herself. A "much (3), some (2), none (1)" format was used. Scores on ADL help provided by the caregiver ranged from 7 to 21 (mean 12.3), while scores on IADL help ranged from 9 to 24 (mean 20.6). Higher scores on each scale indicated greater amounts of help provided. Resources. — Number of caregiver illnesses ranged from 0 to 12 (mean 2.4). Illnesses were self-reported responses to a standard checklist. The 20-item Center for Epidemiologic Studies Depression Index (CES-D; Radloff, 1977) was used to measure the overall level of depression experienced during the past week. Item responses included (0) rarely, (1) sometimes, (2) occasionally, and (3) most of the time. Clinical and commu-
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31.6% 25.0% 17.8% 11.8% 13.8%
Length of time providing care (years)
is somewhat biased by underrepresenting those spouse caregivers in the poorest health. This limitation notwithstanding, the data set provides the opportunity to address an issue with important implications for practice as well as for theory.
X2 = 12.35*
Education Less than high school High school Some college College Post-college
Religion Protestant Catholic Jewish
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Perceptions. — An index of burden which comprised 17 items was created. Items included in the scale were selected from those used in the caregiver literature (e.g., Cantor, 1983; George and Gwyther, 1986; Zarit, Todd, and Zarit, 1986). Caregivers were asked how often (never, sometimes, often) during the past month they had experienced the following as a result of caring for their spouse: isolated and alone; guilty about your interactions with him or her; nervous; that nothing you can do seems to please him or her; irritable or grouchy; that he or she is too ill to be helped by most things you do for him or her; like it's painful to watch him or her; emotionally drained; like you were being pulled in different directions; that you have lost control of your life since your spouse's illness; frustrated; tired or fatigued; resentful of other relatives who could, but do not do things for him or her; helpless; that taking care of him or her gives you a trapped feeling; overwhelmed; that it's hard to plan things ahead. Scores on the scale ranged from 17 to 51 (mean 33.7) with higher scores indicating greater burden. Coefficient alpha was .89. The positive component of caregiving, often referred to as uplifts, was assessed by asking the respondent how often during the past month the impaired spouse: (a) provided companionship, (b) gave embraces, (c) was enjoyable to be with, (d) seemed appreciative or grateful for your help, and (e) appeared cheerful. Respondents were also asked how often they felt that the things they do for their spouse ' 'keeps (him/her) from getting worse" and how often they "got a kick out of their spouse's sense of humor.'' Responses were coded most of the time (2), some of the time (1), or not at all (0). Also included in this index were responses regarding whether respondents felt that helping their spouse made them feel closer (2), neither closer nor more distant (1), or
more distant (0). Scores on uplift ranged from 0 to 18, with higher scores indicating greater uplifts. Coefficient alpha for the scale was .82. Desire to institutionalize. — Desire to institutionalize was assessed by responses to 7 questions. Questions inquired about whether or not the caregiver had: talked to family members or friends about placement; talked to professionals; gotten the name of a possible nursing home; called a nursing home; visited a nursing home; taken their spouse to visit an institution; or made application for placement. Items were similar to those used by Morycz (1985). Scores ranged from 0 to 7 (mean 2.3), with higher scores indicating greater desire to institutionalize. Coefficient alpha was .82. RESULTS
As shown in Table 1, people who institutionalized their spouse within the year of study reported at Time 1 that their partner had been more impaired on all indicators except IADL help provided by the caregiver. They used more services; took more medications to perk them up, calm them down or help them sleep; and profiled as being more depressed than did those who did not institutionalize their spouse. Interestingly, the mean depression score for those who institutionalize is substantially above the score of 17 generally used to identify people who are clinically depressed (Husaini et al., 1980). There were no differences between the two groups on number of caregiver illnesses, quality of relationship with the spouse, and presence of informal assistance. People who institutionalize their spouse reported greater burden and fewer uplifts from the caregiver role than those who did not institutionalize their spouse. Those who actually did institutionalize their spouse indicated a greater desire to do so at baseline assessment. Because of the centrality of the variable '' Desire to institutionalize" in the overall model, regression analysis first tested the usefulness of the model components to predict "desire to institutionalize." Demographic variables (including gender, age, education, income, religion, length of time as a caregiver, and number of children); stressors characteristic of the impaired spouse's behavior (Forgetful, Asocial, Disoriented, Incontinence); the tasks done by the caregiver for the impaired spouse; resources (including mental and physical health of the caregiver, help from informal services and service agencies, relationship with spouse); and caregiver perceptions (Burden and Uplift) were entered into the equation in a single step. As shown in Table 2, significant predictors of "Desire to institutionalize" included age; education; Forgetful behaviors; services; relationship with spouse; number of drugs taken to perk you up, calm you down, or help you sleep; total number of children, and number of ADL tasks with which the caregiver helps the spouse, explaining 34 percent of the variance. Caregivers most likely to be considering institutionalizing their spouse were themselves older and had more education than those not considering institutionalization. Caregivers reporting that their spouses exhibited high levels of Forgetful behaviors were most likely to be considering institutionalization, as were caregivers reporting that they helped their spouse with many ADL tasks. Caregivers who
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nity studies have documented the concurrent validity of the scale for distinguishing patient populations from normals and depressed from psychotic patients; among depressed people, the scale distinguished patients with varying levels of problem severity (Husaini et al., 1980; Weissman et al., 1977). Scores on the CES-D for the sample ranged from 0 to 50 (mean 16.5). Reliability of the scale measured by Cronbach's alpha was .88. Respondents were asked whether they took any medications or alcohol within the past month to "perk you up, calm you down, or help you sleep." Close to half the sample (42.7%) reported using such aids. Informal help was indexed by the number of family members and friends who had provided hands-on assistance to the impaired person. Number of informal helpers ranged from 0 to 4 (mean .77). Services was a count of the total number of formal or informal programs in which the caregiver or the impaired person participated. These included Meals-on-Wheels, counseling, legal services, homemaker service, and self-help groups. Scores ranged from 0 to 11 (mean 3.7). Quality of relationship with the spouse was assessed by asking the respondent to rate the quality of his or her current relationship with the spouse as either excellent (23.1%), good (46.3%), fair (18.5%), or poor (10.6%). Higher scores indicated better relationships.
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Table 2. Bivariate Correlations and Regression Results for "Desire to Institutionalize"
Table 3. Logistic Regression Results Predicting Actual Institutionalization vs Community Residence
Beta
Chi-Square
-.36 .01 .06 -.17 -1.15 .02 -.16
.49 1.02 1.13 .71 .10 1.04 .73
.63 .37 .81 1.66 6.02* 5.72* 1.91
Stressors Forgetful behaviors Asocial behaviors Disoriented behaviors Incontinence ADL tasks IADL tasks
-.06 -.02 -.05 -.30 .04 -.08
.89 .96 .90 .55 1.08 .85
3.32 + .13 .77 1.09 .43 1.49
Resources Number of caregiver illnesses CES-D Medications Informal help Services Relationship with spouse
.01 -.02 -.25 .05 -.10 -.28
1.02 .96 .61 1.10 .82 .57
0.00 .57 .39 .06 1.45 1.39
.01 .10 -.27
1.02 1.22 .58
2.91 +
R2 = .34
Perceptions Burden Uplifts Desire to institutionalize
Note. Results significant at the .10 level are interpreted because all variables were introduced into the equation simultaneously. As such, the overall R1 includes the effect of these variables. Their importance, however, should be interpreted as marginally significant. +p < .10; *p < .05; **p < .01.
Note. Results significant at the .10 level are interpreted because all variables were introduced into the equation simultaneously. As such, the overall R2 includes the effect of these variables. Their importance, however, should be interpreted as marginally significant. +p < .10; *p < .05; **/; < .01.
reported greater service use and those who had poorer relationships with their spouse were more likely to consider institutionalization. Finally, caregivers taking more medications were more likely to be considering institutionalizing their spouse. Logistic regression was used to test the model regarding predictors of actual institutionalization. For these analyses institutionalization was coded " 0 " and community residence coded " 1." Logistic regression is preferable to ordinary least squares regression when a dichotomous dependent variable with unequal cell sizes is used (Cox, 1978). Logistic regression is preferable to discriminant analysis because the logistic regression model requires fewer assumptions than the linear discriminant model (Harrell and Lee, 1985; Press and Wilson, 1978). The resulting logistic coefficients indicate the direction and magnitude of association that an independent variable has with the outcome variable (in this case, negative if a predictor of institutionalization and positive if associated with community residence). The procedure calculates maximum likelihood estimates for model parameters and assesses the overall fit of the logistic model using a chi-square. An R statistic, similar to the multiple correlation coefficient used in linear regression analyses after a correction is made to
account for the number of parameters that are estimated, is calculated (Harrell, 1986). Procedures suggested by Haberman (1982) in which the parameter estimates are multiplied by 2 in order to obtain regression-like coefficients were followed. These coefficients were used to obtain log-odds coefficients. The antilogs of these numbers then translate the model into odds rather than log odds, thereby increasing interpretability. Finally, the program generates a classification table that identifies cases as correctly or incorrectly identified based on the equation. Results from the logistic regression analysis are reported in Table 3. Significant predictors of actual nursing home placement include "Desire to institutionalize," religion, length of time as a caregiver, Forgetful behaviors, and Uplifts. People at greater risk for institutionalization were those whose caregivers had expressed a greater desire to institutionalize at baseline, were Jewish, and whose spouses were more forgetful. People most likely to remain cared for by their spouse in the community were those who already had been in a caregiving relationship for a long period of time and people whose caregiver reported deriving satisfaction from caregiving. The model is significant (X2 = 56.70, df = 22), has an overall R of .29, and correctly classified 80 percent of sample respondents. The logistic
Demographics (Caregiver) Gender (Female) Age Education Income Religion (Jewish) Length of time as caregiver Number of children Stressors Forgetful behaviors Asocial behaviors Disoriented behaviors Incontinence ADL tasks 1ADL tasks
Coefficients
-.05 .05 .16* .10 + -.06 .03 .09 +
-.07 .14* .15* .10 -.10 -.09 .12 +
.38** .14* .21** .22** 29** .06
.24** -.01 .05 -.02 .15 + -.05
Resources Number of caregiver illnesses CES-D Medications Informal help Services Relationship with spouse
-.01 .13* .08 .11* .34** -.15*
-.10 .10 .11 + .01 .20** -.16*
Perceptions Burden Uplifts
17** _ 24**
-.01 -.12
Coefficient Demographics (Caregiver) Gender (Female) Age Education Income Religion (Jewish) Length of time as caregiver Number of children
.13 7.58**
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Antilog
Bivariate Correlations
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Table 4. Logistic Regression Results Predicting Actual Institutionalization or Community Residence (Without Desire to Place) Antilog
Chi-Square
Demographics (Caregiver) Gender (Female) Age Education Income Religion (Jewish) Length of time as caregiver Number of children
-.27 0.00 .03 -.20 -.94 .02 -.20
.58 1.00 1.06 .67 .15 1.04 .67
.38 0.00 .20 2.57 4.45* 5.79* 3.16 +
Stressors Forgetful behaviors Asocial behaviors Disoriented behaviors Incontinence ADL tasks IADL tasks
-.09 -.01 -.05 -.28 .02 -.07
.84 .98 .90 .57 1.04 .87
6.20* .02 .90 1.06 .07 1.21
Resources Number of caregiver illnesses CES-D Medications Informal help Services Relationship with spouse
.05 -.02 -.40 .04 -.15 -.14
1.10 .96 .45 1.08 .74 .76
.17 .78 1.05 .05 3.14 + .41
.01 .10
1.02 1.22
.02 3.61 +
Perceptions Burden Uplifts
Note. Results significant at the .10 level are interpreted because all variables were introduced into the equation simultaneously. As such, the overall R1 includes the effect of these variables. Their importance, however, should be interpreted as marginally significant. + p< .10; *p< .05.
equation correctly accounted for a higher percentage of patients living in the community (90.8%) than in nursing homes (48.5%). In order to allow a more direct comparison of predictors of "Desire to institutionalize" and actual institutionalization, a second logistic regression was calculated in which desire to institutionalize was deleted from the equation. Results from that analysis, reported in Table 4, indicate that religion (Jewish), number of children, Forgetful behaviors, and number of services used predicted institutionalization, while length of time as a caregiver and Uplifts increased the likelihood of community residence. That model, like the one including "Desire to institutionalize," was significant (x2 = 50.28, df = 21, p < .001), and has an overall R of .25. The model correctly classified 88.8 percent of people continuing to live in the community, and 69.2 percent of those who were institutionalized. DISCUSSION
Institutionalization of a spouse is the result of a complex set of variables, including demographic characteristics, stressors, caregiver resources, and caregiver perceptions. While there is no simple formula for identifying which
In the context of exit from the caregiving role, results from these analyses suggest that an unsatisfying relationship combined with personal hardships (physical caregiving demands, reliance on medications, age), a very needy spouse, and knowledge of alternatives (resulting from connections with other services, higher education) combine to suggest a predisposition for or thoughts of exit from the caregiver role. In this vein, it could be speculated that the role of number of
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Coefficient
caregivers are most likely to institutionalize their spouse during the course of a year, these data suggest that reliable predictors of institutional placement can be identified. The best single predictor of nursing home placement is the "desire" to institutionalize expressed at baseline. These findings confirm previous research (Colerick and George, 1986; Morycz, 1985), which suggests that the decision to institutionalize is not one that is taken lightly. Rather, it is often the product of years of consideration. The strength of this association has important implications for intervention programs. It suggests that institutionalization of a spouse may best be examined as a process rather than an event. As a process, intervention programs would focus on helping the caregiver decide the best future course for both him/herself and for the ill spouse. One of the most difficult challenges of being a caregiver is knowing when to relinquish care — for the benefit of both the caregiver and the impaired person. As such, it seems more likely that caregiving spouses will need assistance deciding to institutionalize their spouse rather than deciding not to institutionalize. In this context it is noteworthy that despite the relatively low rate of institutionalization among married people, 21.6 percent of the original sample institutionalized a spouse during the course of a year. It is possible that people who were considering institutional placement were more likely to volunteer to participate in a research study than those who had not given that option much consideration. They may have seen the interview situation as an opportunity to sort issues out and assist them to make the decision to institutionalize their spouse. Examination of predictors of "desire" to institutionalize sheds some light on how the caregiver role (at least the active, hands-on caregiver role) begins to come to an end. Johnson (1982) contends that "people stay in relationships for two major reasons: because they want to; and because they have to." (p. 52). The breakdown of the active caregiver role begins when commitment to the role dissolves. Johnson speculates that commitment to relationships is both personal and structural. Personal commitment derives from the satisfaction with the relationship which grows out of the personal rewards and costs experienced by the individual. Structural commitments are conditions that constrain the individual to continue a line of action once it has been initiated, regardless of personal commitment to it. These include the extent to which the person has invested time, energy, and emotions in the relationship, the social pressures and expectations from society and significant others, and the extent to which reasonably available alternatives are attractive. In terms of the latter, Johnson suggests that decisions are influenced by an assessment of whether the quality of one's life would noticeably be altered by a change in commitment to a role.
INSTITUTIONAUZATION OF SPOUSES
ACKNOWLEDGMENTS
This research project was supported by grant number R01 MH-40480 from the National Institute of Mental Health. Special thanks to Albert Pruchno for statistical assistance. Address correspondence to Dr. Rachel A. Pruchno, Associate Director of Research, Philadelphia Geriatric Center, 5301 Old York Road, Philadelphia, PA 19141. REFERENCES
Barney, Jane L. 1977. "The Prerogative of Choice in Long-term Care." The Gerontologist 17:309-314. Branch, Laurence G. 1984. "Relative Risk Rates of Nonmedical Predictors of Institutional Care Among Elderly Persons." Comprehensive Therapy 10:33-40. Branch, Laurence G. and Alan M. Jette. 1982. "A Prospective Study of Long-term Care Institutionalization Among the Aged.'' American Journal of Public Health 72:1373-1379. Cantor, Marjorie H. 1983. "Strain Among Caregivers: A Study of Experience in the United States." The Gerontologist 23:597-604. Colerick, Elizabeth J. and Linda K. George. 1986. "Predictors of Institutionalization Among Caregivers of Patients with Alzheimer's Disease." Journal of the American Geriatrics Society 34:493—498. Cox, D. 1978. Analysis of Binary Data. London: Chapman and Hall. Dolinsky, Arthur and Ira Rosenwaike. 1988. "The Role of Demographic Factors in the Institutionalization of the Elderly." Research on Aging 10:235-257. George, Linda K. and Lisa Gwyther. 1986. "Caregiver Well-being: A Multidimensional Examination of Family Caregivers of Demented Adults." The Gerontologist 26:253-259. Greenberg, Jay N. and Anna Ginn. 1979. "A Multivariate Analysis of the Predictors of Long-term Care Placement." Home Health Care Services Quarterly 1:75-99. Haberman, S. J. 1982. "Analysis of Dispersion of Multinomial Responses." Journal of the American Statistical Association 77:568-580. Harrell, Frank E. 1986. The Logist Procedure. SUGI: Supplemental Library User's Guide. Cary, NC: SAS Institute. Harrell, Frank E. and K. L. Lee. 1985. "A Comparison of the Discrimination of Discriminant Analysis and Logistic Regression Under Multivariate Normality." In P. K. Sen (Ed.), Biostatistics: Statistics in Biomedical Public Health and Environmental Sciences. New York: Elsevier. Hicks, B., H. Raisz, J. Segal, and N. Doherty. 1981. "The Triage Experiment in Coordinated Care for the Elderly." American Journal of Public Health 71:991-1003. Hill, Reuben. 1949. Families Under Stress: Adjustment to the Crisis of War Separation and Reunion. Westport, CT: Greenwood Press. Horn, John L. and J. Jack McArdle. 1980. "Perspectives on Mathematical/ Statistical Model Building (MASMOB) in Research on Aging." In Leonard W. Poon (Ed.), Aging in the 1980's. Washington, DC: American Psychological Association. Husaini, Bagor A., James A. Neff, Jean B. Harrington, Michael D. Hughes, and Robert H. Stone. 1980. "Depression in Rural Communities: Validating the CES-D Scale." Journal of Community Psvchologv 8:20-27. Johnson, Michael P. 1982. "Social and Cognitive Features of the Dissolution of Commitment to Relationships." In S. Duck (Ed.), Personal Relationships: Dissolving Personal Relationships. London: Academic Press. Kahana, Eva and Boaz Kahana. 1984. "Jews." In Erdman B. Palmore (Ed.), Handbook of the Aged in the United States. Westport, CT: Greenwood Press. Kane, Robert L. and Ruth Matthias. 1984. "From Hospital to Nursing Home: The Long-Term Care Connection." The Gerontologist 24:604609. Kastenbaum, Robert and Sandra E. Candy. 1973. "The Four Percent Fallacy.'' Aging and Human Development 4:15-21. Knopman, David S., John Kitto, Susan Deinard, and Jessica Heiring. 1988. "Longitudinal Study of Death and Institutionalization in Patients With Primary Degenerative Dementia." Journal of the American Geriatrics Society 36A0S-W2. Kraus, A. S., R. A. Spasoff, E. J. Beattie, E. W. Holden, J. S. Lawson, M. Rodenberg, and G. M. Woodcock. 1976. "Elderly Applicants to
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children is related to the existence of alternative roles for the caregiver, such as the roles of parent and grandparent. Ending the role as active caregiver may free one to devote more time and energy to other, more positive roles. Predictors of actual institutionalization, including religion (Jewish), length of time as caregiver (negative), spouses who are severely forgetful, lack of uplifts, total number of children, and use of services are consistent with predictors of desire to institutionalize. Results suggest that people who actually terminate the role of hands-on caregiver are those who no longer derive positive value from the role. The negative association which length of time as caregiver has on institutionalization is consistent with Johnson's (1982) theory of structural commitment. People in a role for less time are likely to be less committed to the role than people in the role for longer periods of time. The longer one has invested in the caregiver role, the more committed they are to continuing that role. The strength of being Jewish as a predictor of institutionalization deserves comment. Within the framework of commitment theory, it may be possible that Jewish people are less likely to invest in the caregiver role, and more likely to invest in other late-life family relationships. This hypothesis requires further study. It is also possible that the institutionalization alternative has a more positive valence for Jews, since Jewish-sponsored institutional facilities are generally in the forefront of innovative environment and program development (Kahana and Kahana, 1984). It is interesting, yet somewhat troublesome, that the logistic function predicted residence in the community much better than it predicted institutional placement. Results suggest that other variables need to be added to the model to better explain institutional placement. Future research that focuses more carefully on the meaning of the caregiving role to the individual and on the personality of the caregivers may help to shed light on why the caregiver role is so fiercely embraced by some, but not by others. Furthermore, more careful attention to the role which sudden or severe changes in patient or caregiver functioning has on institutionalization may help to better predict risk for institutionalization. Generalization of study results must be made with caution, because data analyses include only those respondents for whom both baseline and one-year follow-up data were available. Predictions regarding institutionalization made from baseline data would not necessarily be applicable to respondents who elected to drop out of the study. As described earlier, drop-outs were less well-educated and older than people remaining in the study. Finally, future research, which builds on these results as well as on family stress theory, would benefit by including a broader definition of the stressor component. While this research limited stressor to characteristics of the impaired person, theoretically the construct includes multidimensional facets of the caregiver's life as well as stressors in the lives of other family members. Caregiving does not occur in a limited context; rather, it is one of many roles played by an individual. Similarly, model building would benefit from an enriched assessment of social support. As such, the antecedents and consequences of different dimensions of support could be more fully understood.
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American Journal of Public Health 62:1094-1101.
Palmore, Erdman. 1976. "Total Chance of Institutionalization Among the Aged." The Gerontologist 16:504-507. Potashnik, Sheryl L. 1988. Spouse Caregiving: The Impact ofStressors and Perceptions on Well-being. Doctoral dissertation, University of Michigan. Poulshock, S. Walter and Gary T. Deimling. 1984. "Families Caring for Elders in Residence: Issues on Measurement of Burden." Journal of Gerontology 39:230-239. Press, D. B. and S. Wilson. 1978. "Choosing Between Logistic Regression and Discriminant Analysis." Journal of the American Statistical Association 73:699-705. Pruchno, Rachel A. and Nancy L. Resch. 1989. "Aberrant Behaviors and Alzheimer's Disease: Mental Health Effects on Spouse Caregivers." Journal of Gerontology: Social Sciences 44:S 177-S182. Radloff, Lenore. 1977. "The CES-D Scale: A Self-report Depression Scale
for Research in the General Population." Applied Psychological Measurement 1:385-401. Shapiro, Evelyn and Robert B. Tate. 1985. "Predictors of Long Term Care Facility Use Among the Elderly." Canadian Journal on Aging 4:11-19. Soldo, BethJ. 1981. "The Living Arrangements of the Elderly in the Near Future." In Sara B. Kiesler, James N. Morgan, and Valerie K. Oppenheimer (Eds.), Aging: Social Change. New York: Academic Press. Soldo, Beth J. 1982. Effects of Number and Se.x of Adult Children on LTC Service Use Patterns. Paper presented at Annual Meetings of Social Security Administration, Boston, MA. Townsend, Peter. 1965. "The Effects of Family Structure on the Likelihood of Admission to an Institution in Old Age: The Application of a General Theory." In Ethel Shanas and Gordon F. Streib (Eds.), Social Structure and the Family: Generational Relations. Englewood Cliffs, NJ: Prentice Hall. U.S. Department of Health, Education and Welfare. 1979. The National Nursing Home Survey: 1977 Summary for the United States. Hyattsville, MD: U.S. Department of HEW. U.S. Department of Health and Human Services. 1989. The National Nursing Home Survey: 1985 Summary for the United States. Hyattsville, MD: U.S. Department of HHS. Vicente, Leticia, James A. Wiley, and R. Allen Carrington. 1979. "The Risk of Institutionalization Before Death." The Gerontologist 19:361367. Weissert, William G. 1985. "Estimating the Long-term Care Population: Prevalence Rates and Selected Characteristics." Health Care Financing Review 6:83-91. Weissman, Myrna M., Diane Sholomskas, Margaret Pottenger, Brigitte A. Prusoff, and Ben Z. Locke. 1977. "Assessing Depressive Symptoms in Five Psychiatric Populations: A Validation Study." American Journal of Epidemiology 106:203-214. Wolf, A. D. 1983. Kin Availability and the Living Arrangements of Older Women. Washington, DC: Urban Institute. Zarit, Steven H., Pamela A. Todd, and Judy M. Zarit. 1986. "Subjective Burden of Husbands and Wives as Caregivers: A Longitudinal Study." The Gerontologist
26:260-266.
Received June 1, 1989 Accepted December 21,1989
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Long-term Care Institutions. I. Their Characteristics, Health Problems and State of Mind." Journal of the American Geriatrics Society 23:117-125. Liang, Jersey and Edward Jow-ChingTu. 1986. "Estimating Lifetime Risk of Nursing Home Residency: A Further Note." The Gerontologist 26:560-563. Lowenthal, Marjorie F., Paul L. Berkman, and Associates. 1967. Aging and Mental Disorder in San Francisco. San Francisco: Jossey-Bass. McCoy, John L. and Beatrice E. Edwards. 1981. "Contextual and Sociodemographic Antecedents of Institutionalization Among Aged Welfare Recipients." Medical Care 19:907-921. McCubbin, Hamilton 1. and Joan M. Patterson. 1982. "Family Adaptation to Crises." In Hamilton I. McCubbin, A. Elizabeth Cauble, and Joan M. Patterson (Eds.), Family Stress, Coping, and Social Support. Springfield, IL: Charles C Thomas. Morris, John N., Sylvia Sherwood, and Claire E. Gutkin. 1988. "Inst-Risk II. An Approach to Forecasting Relative Risk of Future Institutional Placement." Health Services Research 23:511-536. Morycz, Richard. 1985. "Caregiving Strain and the Desire to Institutionalize Family Members with Alzheimer's Disease." Research on Aging 7:329-361. Nielson, M., Margaret Blenkner, and M. Bloom. 1972. "Older Persons After Hospitalization: A Controlled Study of Home Aide Service."
Copyright 1990 by The Geronmlogical Society of America
Predictors of Institutionalization Among Alzheimer Disease Victims With Caregiving Spouses Rachel A. Pruchno, J. Eileen Michaels, and Sheryl L. Potashnik Philadelphia Geriatric Center.
ACCORDING to statistical projections, in the year 2000 •**• the dependent aged population will number close to 6.5 million people, more than one third of whom will live in nursing homes (Weissart, 1985). These numbers represent a doubling of the current nursing home population. Although at any one point in time 4 to 5 percent of people over the age of 65 reside in nursing homes, Kastenbaum and Candy (1973) and Palmore (1976) estimate that the cumulative chance of being placed in an institution before death is greater than 20 percent. More recently, Liang and Tu (1986) estimated that the lifetime risk of institutionalization is 29.7 percent, with the possibility of entering a nursing home increasing to 45.6 percent by age 90. Institutionalization is not a random event; rather, institutionalization has been associated with: demographic characteristics such as being unmarried, poor, female, White, not having children, being older, and living alone (Dolinsky and Rosenwaike, 1988; McCoy and Edwards, 1981; Palmore, 1976; Soldo, 1981; Townsend, 1965; Vicente, Wiley, and Carrington, 1979; Wolf, 1983); the mental and physical health of the patient, including abilities to perform activities of daily living, score on a mental status exam, and presence of aberrant behaviors (Knopman et al., 1988; McCoy and Edwards, 1981); and with characteristics of caregivers, including relationship of caregiver to impaired person (e.g., child vs spouse) and caregiver burden or strain (Colerick and George, 1986). Most elderly people prefer to maintain independent households (Soldo, 1981); even in the face of chronic disability, institutionalization is viewed as a last resort. The decision to relinquish care to professionals is difficult due to the intense and often exclusionary bond which the caregiver has toward the patient (Poulshock and Deimling, 1984), and this is especially true when the caregiver is a spouse. Although impaired people who are married have one of the lowest rates of institutionalization, between 1977 and 1985 the percentage of people living with a spouse just prior to institutionalization increased from 5.5 to 12.5 percent (U.S. HEW, 1979; HHS, 1989). The analyses that follow focus on married victims of Alzheimer's disease. Predictors of both the caregiver's desire to institutionalize as well as actual
institutional placement will be identified based on a theoretical model generated from current literature and family stress theory. Theoretical Model The conceptual framework for predicting a spouse's desire to institutionalize as well as actual institutionalization was developed by integrating empirical findings from the more general arena of risk factors for institutionalization with relevant theoretical considerations from the family stress literature. Four sets of variables are proposed. First are demographic factors. Demographic factors associated with institutionalization are: high socioeconomic status (Greenberg and Ginn, 1979; Kraus et al., 1976; Vicente, Wiley, and Carrington, 1979), being female (Kane and Matthias, 1984; Kraus et al., 1976), and advanced age (Morris, Sherwood, and Gutkin, 1988; Vicente, Wiley, and Carrington, 1979). The role of children is unclear. Morris, Sherwood, and Gutkin (1988) found no relationship between number of children and institutional placement, while Soldo (1982) reports that absence of at least one daughter may indicate a greater risk of institutionalization at a lower level of disability. Greenberg and Ginn (1979), on the other hand, found that number of children was not related to risk for institutionalization. Second, from theories of family stress (Hill, 1949; McCubbin and Patterson, 1982), characteristics of impaired spouses or "stressors" are considered. These are conceptualized as including patient symptoms such as forgetful behaviors, asocial characteristics, disoriented tendencies, and incontinence. Investigators consistently report that problems with activities of daily living, mental disorientation, number of medical conditions, incontinence, hospitalizations within the previous year, and use of ambulatory aids increase the risk of institutionalization (Branch, 1984; Branch and Jette, 1982; Greenberg and Ginn, 1979; Knopman et al., 1988; Kraus et al., 1976; McCoy and Edwards, 1981; Shapiro and Tate, 1985). The role played by stressors in predicting institutionalization, however, may be more complex than these data indicate. Colerick and George (1986), for example, report that S259
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A theoretical model predicting "desire to institutionalize" and actual institutionalization was developed and tested on a sample of 220 persons caring for a demented spouse. Significant predictors of "desire to institutionalize" include age and education of caregiver, spouse's forgetful behaviors, ADL tasks done by the caregiver, medications taken by the caregiver, services used, and quality of relationship with spouse. Predictors of actual institutionalization are desire to institutionalize, length of time spent as a caregiver, religion, uplifts, andforgetful behaviors of the impaired spouse.
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institutionalization. Morycz (1985) reports that 38 percent of the variance contributing to the desire to institutionalize was accounted for by four predictor variables: patient's marital status (unmarried), patient's living arrangements (alone), the physical labor required by patient functional deficits, and the strain experienced by the caregiver. Although research has documented the discrepancies between attitudes and actual behavior, Morycz (1985) found that the desire to institutionalize was significantly associated with actual institutionalization (r = .53,/; < .001). METHODS
Sample. — Data for these analyses derive from a longitudinal study of 315 persons who, at intake to the research project, were providing care in the community to a spouse who had been diagnosed with Alzheimer's disease or a related disorder. Respondents were identified through public service announcements, and contacts with such community gatekeepers as synagogues, churches, community service organizations, hospitals, and support groups. Respondents were primarily female (67.9%), White (86%), and ranged in age from 45 to 94 (M = 70.2). They had been providing care to their spouse for a mean of 2.8 years (range 1 month to 20.3 years). Of the 315 respondents, 44 percent were Protestant, 29 percent Catholic, and 25 percent Jewish, with the remaining 2 percent not expressing religious affiliations. Approximately one third (35%) of the sample had not completed high school, 28 percent had completed high school, and 37 percent had more than a high school education. Annual income ranged from $5,000 per year to more than $50,000 (median of $17,500). Respondents received a baseline interview and were reinterviewed one year later. Interview data for the analyses that follow derive only from the baseline assessment of the 220 respondents who participated in both the baseline and one-year follow-up. This procedure was followed in order to assure that predictors were, in fact, antecedents rather than consequences of institutionalization. Status at one year after baseline was coded as community (1) versus institutionalization (0). Close to half the original sample (N = 152) continued to provide care to their spouse in the community and participate in the follow-up interview. Within the oneyear period, 21.6 percent of the original sample (n = 68) institutionalized their spouse and also participated in a follow-up interview. The remaining 95 cases not used in the analyses that follow include caregivers who dropped out of the study (n = 72) or those whose spouse died at home (/? = 23) prior to the one-year follow-up. Chi-square and Mests comparing caregivers included in this set of analyses with those not included indicated that the former group was more likely to be better educated (x2 = 12.85, p < .05) and younger (/ = 3.38, p < .001) than the latter. There were no differences between the groups on gender, race, religion, income, or length of time person had been a caregiver. As shown in Table 1, there were no differences between those respondents who institutionalized their spouses and those who continued to provide care in the community in terms of gender, age, income, or number of children. Caregivers who continued to provide care in the community had
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physical characteristics of the patient, including length of illness and severity of symptoms, do not emerge as significant predictors of institutionalization. Similarly, Zarit, Todd, and Zarit (1986), studying 64 spouse caregivers, found that neither mental status score nor the total frequency of memory and behavior problems differed significantly at Time 1 between those who ultimately placed their spouse and those who did not. The third set of predictors, caregiver resources, includes both personal and social resources available to the caregiver. It is expected that the poorer the physical and mental health of the caregiver, the greater will be the likelihood of placement of the spouse. Colerick and George (1986) found that the caregiver's use of psychotropic drugs was associated with greater likelihood of nursing home placement, but that self-rated health, stress symptoms, overall life satisfaction, satisfaction with leisure, and perceived economic status were not significant discriminators. Research regarding the role of social resources as predictors of institutionalization has yielded contradictory evidence. Colerick and George (1986) report that caregivers who institutionalize their relative had greater knowledge of services at baseline than did caregivers who did not institutionalize their relative. They report that there was no statistically significant difference in use of services between the two groups at baseline. On the other hand, Hicks et al. (1981), found that patients who received coordinated home care services through Project Triage had higher subsequent rates of long-term care in institutions than members of a matched comparison group who did not get services. Also, McCoy and Edwards (1981), using data from the 1973 Survey of Low-Income Aged and Disabled to predict 1974 institutionalized status among elderly welfare recipients, found that receipt of services was associated with greater probability of institutional placement. However, in a longitudinal study, Nielson, Blenkner, and Bloom (1972) found that elders who received home-care services were significantly less likely to be institutionalized than those who did not receive services. The role of family helpers is also unclear as a predictor of institutionalization. Lowenthal, Berkman, and Associates (1967) report that placement was associated with a breakdown of the family support system. Similarly, Barney (1977) found that individuals lacking strong social supports are more likely to be institutionalized. Shapiro and Tate (1985), on the other hand, found that frequent contact with relatives was a significant predictor of placement within a 7-year period. The fourth set of variables consists of caregivers' perceptions of the burden or stress associated with the caregiving situation. It is expected that the more burdened caregivers feel, the more likely they are to institutionalize a spouse. Colerick and George (1986) found that caregivers who institutionalize an impaired relative were more likely to feel stressed at baseline and have more competing role responsibilities (i.e., work) than those who did not. It is expected that these four sets of variables contribute to the prediction of both the desire to institutionalize a spouse as well as actual institutionalization. Desire to institutionalize an older relative has received less attention than actual
INSTITUTIONALIZATION OF SPOUSES
Table 1. Mean Group Comparisons Community (#i = 152)
Institution Statistic
(/? = 68) 2
Gender (female)
64.5%
76.5%
X = 2.59
Caregiver Age
69.2
69.1
/ = - .09
26.5% 32.4% 32.4% 4.4% 4.4%
Income Less than $10,000 $10,000-$ 14,999 $15,000-$ 19,999 $20,000-$24,999 $25,000-$34,999 $35,000-$49,999 $50,000 or more
8.7% 24.0% 22.07o 11.3% 14.0% 10.7% 9.3%
9.1% 24.2% 21.3% 7.6% 19.7% 12.1% 6.1%
Number of children Stressors Forgetful behaviors Asocial behaviors Disoriented behaviors Incontinence ADL caregiver help IADL caregiver help Resources Number of caregiver illnesses CES-D Caregiver medications Informal help Service use Relationship with spouse Perceptions Burden Uplifts Desire to institutionalize
Measures
= 2.28
X2 = 9.05* 48.0% 30.9% 18.4%
42.6% 22.1% 35.3%
2.99
2.02
/ = -3.02**
2.19
2.51
t = 1.33
13.74 5.84 2.53 .57 11.77 20.33
17.48 7.41 3.90 .88 13.39 21.22
t / t t t /
= = = = = =
3.83** 2.32* 2.48* 2.73** 2.64** 1.95
2.45 14.93 .38 .70 3.32 2.85
2.47 20.16 .53 .93 4.44 2.67
/ t / / t t
= = = = = =
.08 3.16** 2.06* 1.60 3.38** -1.27
32.75 10.07 1.86
35.82 7.89 3.36
t = 2.86** / = -3.54** / = 4.88**
*/>< .05;**p< .01.
either very low or very high levels of education, while those who institutionalized their spouse were more likely to have had either a high school education or some college. A greater proportion of people who institutionalized a spouse were Jewish, while more of those providing care in the community were either Protestant or Catholic. This trend suggested recoding religion to reflect religion as either Jewish (1) or non-Jewish (0). People continuing to provide care in the community had been caregivers longer at baseline than those who institutionalized their spouse. Although the sample is not truly representative of the population of spouse caregivers, it is nonetheless large and quite diverse with respect to potentially relevant demographic and social characteristics. It is likely that the sample
Stressors. — Severity of impairment on the part of the impaired spouse was measured by caregiver's assessment of the extent to which 34 behaviors characterized the spouse during the past month. The behaviors included cognitive, physical, affective, and social characteristics of Alzheimer's disease derived from the caregiver literature. The original list of more than 100 behaviors was shortened based on suggestions from a multidisciplinary team comprising neurologists, psychologists, anthropologists, and sociologists. The team sought to include behaviors characteristic of Alzheimer patients experiencing a wide range of disability. Each of the 34 behaviors was rated as occurring (1) never — the spouse is not impaired on this dimension; (2) 1-2 times a month; (3) 3-4 times a month; (4) 2-5 times during a week; or (5) almost daily. Behaviors were subjected to the three-phase model-testing procedure suggested by Horn and McArdle (1980). Results of these analyses are described in Pruchno and Resch (1989) and Potashnik (1988). Factors included: Forgetful behaviors (forgetting recent events, names of objects, caregiver's name, past events; inability to express self; not recognizing familiar others); Asocial behaviors (seeming sad, losing temper, verbal abuse, embarrassing caregiver, disrupting meals); and Disoriented behaviors (hearing and seeing things, getting lost in the house, confusing day and night). Cronbach coefficient alpha reliabilities for the scales ranged from .65 (Asocial) to .77 (Forgetful). Higher scores indicated more frequent behavioral symptoms. Incontinence scores describe people who are not at all incontinent (53.2%), incontinent of either bladder or bowel (26.8%), or incontinent of both bladder and bowel (20.0%). During the course of the interview, caregivers were asked to provide information about 15 tasks encompassing seven Activities of Daily Living (ADLs) and eight Instrumental Activities of Daily Living (IADLs). Caregivers were questioned about the impaired spouse's need for help with each task (using a "yes or no" format). Then, for each task for which help was required, the caregiver reported degree of help provided by him or herself. A "much (3), some (2), none (1)" format was used. Scores on ADL help provided by the caregiver ranged from 7 to 21 (mean 12.3), while scores on IADL help ranged from 9 to 24 (mean 20.6). Higher scores on each scale indicated greater amounts of help provided. Resources. — Number of caregiver illnesses ranged from 0 to 12 (mean 2.4). Illnesses were self-reported responses to a standard checklist. The 20-item Center for Epidemiologic Studies Depression Index (CES-D; Radloff, 1977) was used to measure the overall level of depression experienced during the past week. Item responses included (0) rarely, (1) sometimes, (2) occasionally, and (3) most of the time. Clinical and commu-
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31.6% 25.0% 17.8% 11.8% 13.8%
Length of time providing care (years)
is somewhat biased by underrepresenting those spouse caregivers in the poorest health. This limitation notwithstanding, the data set provides the opportunity to address an issue with important implications for practice as well as for theory.
X2 = 12.35*
Education Less than high school High school Some college College Post-college
Religion Protestant Catholic Jewish
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Perceptions. — An index of burden which comprised 17 items was created. Items included in the scale were selected from those used in the caregiver literature (e.g., Cantor, 1983; George and Gwyther, 1986; Zarit, Todd, and Zarit, 1986). Caregivers were asked how often (never, sometimes, often) during the past month they had experienced the following as a result of caring for their spouse: isolated and alone; guilty about your interactions with him or her; nervous; that nothing you can do seems to please him or her; irritable or grouchy; that he or she is too ill to be helped by most things you do for him or her; like it's painful to watch him or her; emotionally drained; like you were being pulled in different directions; that you have lost control of your life since your spouse's illness; frustrated; tired or fatigued; resentful of other relatives who could, but do not do things for him or her; helpless; that taking care of him or her gives you a trapped feeling; overwhelmed; that it's hard to plan things ahead. Scores on the scale ranged from 17 to 51 (mean 33.7) with higher scores indicating greater burden. Coefficient alpha was .89. The positive component of caregiving, often referred to as uplifts, was assessed by asking the respondent how often during the past month the impaired spouse: (a) provided companionship, (b) gave embraces, (c) was enjoyable to be with, (d) seemed appreciative or grateful for your help, and (e) appeared cheerful. Respondents were also asked how often they felt that the things they do for their spouse ' 'keeps (him/her) from getting worse" and how often they "got a kick out of their spouse's sense of humor.'' Responses were coded most of the time (2), some of the time (1), or not at all (0). Also included in this index were responses regarding whether respondents felt that helping their spouse made them feel closer (2), neither closer nor more distant (1), or
more distant (0). Scores on uplift ranged from 0 to 18, with higher scores indicating greater uplifts. Coefficient alpha for the scale was .82. Desire to institutionalize. — Desire to institutionalize was assessed by responses to 7 questions. Questions inquired about whether or not the caregiver had: talked to family members or friends about placement; talked to professionals; gotten the name of a possible nursing home; called a nursing home; visited a nursing home; taken their spouse to visit an institution; or made application for placement. Items were similar to those used by Morycz (1985). Scores ranged from 0 to 7 (mean 2.3), with higher scores indicating greater desire to institutionalize. Coefficient alpha was .82. RESULTS
As shown in Table 1, people who institutionalized their spouse within the year of study reported at Time 1 that their partner had been more impaired on all indicators except IADL help provided by the caregiver. They used more services; took more medications to perk them up, calm them down or help them sleep; and profiled as being more depressed than did those who did not institutionalize their spouse. Interestingly, the mean depression score for those who institutionalize is substantially above the score of 17 generally used to identify people who are clinically depressed (Husaini et al., 1980). There were no differences between the two groups on number of caregiver illnesses, quality of relationship with the spouse, and presence of informal assistance. People who institutionalize their spouse reported greater burden and fewer uplifts from the caregiver role than those who did not institutionalize their spouse. Those who actually did institutionalize their spouse indicated a greater desire to do so at baseline assessment. Because of the centrality of the variable '' Desire to institutionalize" in the overall model, regression analysis first tested the usefulness of the model components to predict "desire to institutionalize." Demographic variables (including gender, age, education, income, religion, length of time as a caregiver, and number of children); stressors characteristic of the impaired spouse's behavior (Forgetful, Asocial, Disoriented, Incontinence); the tasks done by the caregiver for the impaired spouse; resources (including mental and physical health of the caregiver, help from informal services and service agencies, relationship with spouse); and caregiver perceptions (Burden and Uplift) were entered into the equation in a single step. As shown in Table 2, significant predictors of "Desire to institutionalize" included age; education; Forgetful behaviors; services; relationship with spouse; number of drugs taken to perk you up, calm you down, or help you sleep; total number of children, and number of ADL tasks with which the caregiver helps the spouse, explaining 34 percent of the variance. Caregivers most likely to be considering institutionalizing their spouse were themselves older and had more education than those not considering institutionalization. Caregivers reporting that their spouses exhibited high levels of Forgetful behaviors were most likely to be considering institutionalization, as were caregivers reporting that they helped their spouse with many ADL tasks. Caregivers who
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nity studies have documented the concurrent validity of the scale for distinguishing patient populations from normals and depressed from psychotic patients; among depressed people, the scale distinguished patients with varying levels of problem severity (Husaini et al., 1980; Weissman et al., 1977). Scores on the CES-D for the sample ranged from 0 to 50 (mean 16.5). Reliability of the scale measured by Cronbach's alpha was .88. Respondents were asked whether they took any medications or alcohol within the past month to "perk you up, calm you down, or help you sleep." Close to half the sample (42.7%) reported using such aids. Informal help was indexed by the number of family members and friends who had provided hands-on assistance to the impaired person. Number of informal helpers ranged from 0 to 4 (mean .77). Services was a count of the total number of formal or informal programs in which the caregiver or the impaired person participated. These included Meals-on-Wheels, counseling, legal services, homemaker service, and self-help groups. Scores ranged from 0 to 11 (mean 3.7). Quality of relationship with the spouse was assessed by asking the respondent to rate the quality of his or her current relationship with the spouse as either excellent (23.1%), good (46.3%), fair (18.5%), or poor (10.6%). Higher scores indicated better relationships.
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Table 2. Bivariate Correlations and Regression Results for "Desire to Institutionalize"
Table 3. Logistic Regression Results Predicting Actual Institutionalization vs Community Residence
Beta
Chi-Square
-.36 .01 .06 -.17 -1.15 .02 -.16
.49 1.02 1.13 .71 .10 1.04 .73
.63 .37 .81 1.66 6.02* 5.72* 1.91
Stressors Forgetful behaviors Asocial behaviors Disoriented behaviors Incontinence ADL tasks IADL tasks
-.06 -.02 -.05 -.30 .04 -.08
.89 .96 .90 .55 1.08 .85
3.32 + .13 .77 1.09 .43 1.49
Resources Number of caregiver illnesses CES-D Medications Informal help Services Relationship with spouse
.01 -.02 -.25 .05 -.10 -.28
1.02 .96 .61 1.10 .82 .57
0.00 .57 .39 .06 1.45 1.39
.01 .10 -.27
1.02 1.22 .58
2.91 +
R2 = .34
Perceptions Burden Uplifts Desire to institutionalize
Note. Results significant at the .10 level are interpreted because all variables were introduced into the equation simultaneously. As such, the overall R1 includes the effect of these variables. Their importance, however, should be interpreted as marginally significant. +p < .10; *p < .05; **p < .01.
Note. Results significant at the .10 level are interpreted because all variables were introduced into the equation simultaneously. As such, the overall R2 includes the effect of these variables. Their importance, however, should be interpreted as marginally significant. +p < .10; *p < .05; **/; < .01.
reported greater service use and those who had poorer relationships with their spouse were more likely to consider institutionalization. Finally, caregivers taking more medications were more likely to be considering institutionalizing their spouse. Logistic regression was used to test the model regarding predictors of actual institutionalization. For these analyses institutionalization was coded " 0 " and community residence coded " 1." Logistic regression is preferable to ordinary least squares regression when a dichotomous dependent variable with unequal cell sizes is used (Cox, 1978). Logistic regression is preferable to discriminant analysis because the logistic regression model requires fewer assumptions than the linear discriminant model (Harrell and Lee, 1985; Press and Wilson, 1978). The resulting logistic coefficients indicate the direction and magnitude of association that an independent variable has with the outcome variable (in this case, negative if a predictor of institutionalization and positive if associated with community residence). The procedure calculates maximum likelihood estimates for model parameters and assesses the overall fit of the logistic model using a chi-square. An R statistic, similar to the multiple correlation coefficient used in linear regression analyses after a correction is made to
account for the number of parameters that are estimated, is calculated (Harrell, 1986). Procedures suggested by Haberman (1982) in which the parameter estimates are multiplied by 2 in order to obtain regression-like coefficients were followed. These coefficients were used to obtain log-odds coefficients. The antilogs of these numbers then translate the model into odds rather than log odds, thereby increasing interpretability. Finally, the program generates a classification table that identifies cases as correctly or incorrectly identified based on the equation. Results from the logistic regression analysis are reported in Table 3. Significant predictors of actual nursing home placement include "Desire to institutionalize," religion, length of time as a caregiver, Forgetful behaviors, and Uplifts. People at greater risk for institutionalization were those whose caregivers had expressed a greater desire to institutionalize at baseline, were Jewish, and whose spouses were more forgetful. People most likely to remain cared for by their spouse in the community were those who already had been in a caregiving relationship for a long period of time and people whose caregiver reported deriving satisfaction from caregiving. The model is significant (X2 = 56.70, df = 22), has an overall R of .29, and correctly classified 80 percent of sample respondents. The logistic
Demographics (Caregiver) Gender (Female) Age Education Income Religion (Jewish) Length of time as caregiver Number of children Stressors Forgetful behaviors Asocial behaviors Disoriented behaviors Incontinence ADL tasks 1ADL tasks
Coefficients
-.05 .05 .16* .10 + -.06 .03 .09 +
-.07 .14* .15* .10 -.10 -.09 .12 +
.38** .14* .21** .22** 29** .06
.24** -.01 .05 -.02 .15 + -.05
Resources Number of caregiver illnesses CES-D Medications Informal help Services Relationship with spouse
-.01 .13* .08 .11* .34** -.15*
-.10 .10 .11 + .01 .20** -.16*
Perceptions Burden Uplifts
17** _ 24**
-.01 -.12
Coefficient Demographics (Caregiver) Gender (Female) Age Education Income Religion (Jewish) Length of time as caregiver Number of children
.13 7.58**
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Antilog
Bivariate Correlations
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Table 4. Logistic Regression Results Predicting Actual Institutionalization or Community Residence (Without Desire to Place) Antilog
Chi-Square
Demographics (Caregiver) Gender (Female) Age Education Income Religion (Jewish) Length of time as caregiver Number of children
-.27 0.00 .03 -.20 -.94 .02 -.20
.58 1.00 1.06 .67 .15 1.04 .67
.38 0.00 .20 2.57 4.45* 5.79* 3.16 +
Stressors Forgetful behaviors Asocial behaviors Disoriented behaviors Incontinence ADL tasks IADL tasks
-.09 -.01 -.05 -.28 .02 -.07
.84 .98 .90 .57 1.04 .87
6.20* .02 .90 1.06 .07 1.21
Resources Number of caregiver illnesses CES-D Medications Informal help Services Relationship with spouse
.05 -.02 -.40 .04 -.15 -.14
1.10 .96 .45 1.08 .74 .76
.17 .78 1.05 .05 3.14 + .41
.01 .10
1.02 1.22
.02 3.61 +
Perceptions Burden Uplifts
Note. Results significant at the .10 level are interpreted because all variables were introduced into the equation simultaneously. As such, the overall R1 includes the effect of these variables. Their importance, however, should be interpreted as marginally significant. + p< .10; *p< .05.
equation correctly accounted for a higher percentage of patients living in the community (90.8%) than in nursing homes (48.5%). In order to allow a more direct comparison of predictors of "Desire to institutionalize" and actual institutionalization, a second logistic regression was calculated in which desire to institutionalize was deleted from the equation. Results from that analysis, reported in Table 4, indicate that religion (Jewish), number of children, Forgetful behaviors, and number of services used predicted institutionalization, while length of time as a caregiver and Uplifts increased the likelihood of community residence. That model, like the one including "Desire to institutionalize," was significant (x2 = 50.28, df = 21, p < .001), and has an overall R of .25. The model correctly classified 88.8 percent of people continuing to live in the community, and 69.2 percent of those who were institutionalized. DISCUSSION
Institutionalization of a spouse is the result of a complex set of variables, including demographic characteristics, stressors, caregiver resources, and caregiver perceptions. While there is no simple formula for identifying which
In the context of exit from the caregiving role, results from these analyses suggest that an unsatisfying relationship combined with personal hardships (physical caregiving demands, reliance on medications, age), a very needy spouse, and knowledge of alternatives (resulting from connections with other services, higher education) combine to suggest a predisposition for or thoughts of exit from the caregiver role. In this vein, it could be speculated that the role of number of
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Coefficient
caregivers are most likely to institutionalize their spouse during the course of a year, these data suggest that reliable predictors of institutional placement can be identified. The best single predictor of nursing home placement is the "desire" to institutionalize expressed at baseline. These findings confirm previous research (Colerick and George, 1986; Morycz, 1985), which suggests that the decision to institutionalize is not one that is taken lightly. Rather, it is often the product of years of consideration. The strength of this association has important implications for intervention programs. It suggests that institutionalization of a spouse may best be examined as a process rather than an event. As a process, intervention programs would focus on helping the caregiver decide the best future course for both him/herself and for the ill spouse. One of the most difficult challenges of being a caregiver is knowing when to relinquish care — for the benefit of both the caregiver and the impaired person. As such, it seems more likely that caregiving spouses will need assistance deciding to institutionalize their spouse rather than deciding not to institutionalize. In this context it is noteworthy that despite the relatively low rate of institutionalization among married people, 21.6 percent of the original sample institutionalized a spouse during the course of a year. It is possible that people who were considering institutional placement were more likely to volunteer to participate in a research study than those who had not given that option much consideration. They may have seen the interview situation as an opportunity to sort issues out and assist them to make the decision to institutionalize their spouse. Examination of predictors of "desire" to institutionalize sheds some light on how the caregiver role (at least the active, hands-on caregiver role) begins to come to an end. Johnson (1982) contends that "people stay in relationships for two major reasons: because they want to; and because they have to." (p. 52). The breakdown of the active caregiver role begins when commitment to the role dissolves. Johnson speculates that commitment to relationships is both personal and structural. Personal commitment derives from the satisfaction with the relationship which grows out of the personal rewards and costs experienced by the individual. Structural commitments are conditions that constrain the individual to continue a line of action once it has been initiated, regardless of personal commitment to it. These include the extent to which the person has invested time, energy, and emotions in the relationship, the social pressures and expectations from society and significant others, and the extent to which reasonably available alternatives are attractive. In terms of the latter, Johnson suggests that decisions are influenced by an assessment of whether the quality of one's life would noticeably be altered by a change in commitment to a role.
INSTITUTIONAUZATION OF SPOUSES
ACKNOWLEDGMENTS
This research project was supported by grant number R01 MH-40480 from the National Institute of Mental Health. Special thanks to Albert Pruchno for statistical assistance. Address correspondence to Dr. Rachel A. Pruchno, Associate Director of Research, Philadelphia Geriatric Center, 5301 Old York Road, Philadelphia, PA 19141. REFERENCES
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children is related to the existence of alternative roles for the caregiver, such as the roles of parent and grandparent. Ending the role as active caregiver may free one to devote more time and energy to other, more positive roles. Predictors of actual institutionalization, including religion (Jewish), length of time as caregiver (negative), spouses who are severely forgetful, lack of uplifts, total number of children, and use of services are consistent with predictors of desire to institutionalize. Results suggest that people who actually terminate the role of hands-on caregiver are those who no longer derive positive value from the role. The negative association which length of time as caregiver has on institutionalization is consistent with Johnson's (1982) theory of structural commitment. People in a role for less time are likely to be less committed to the role than people in the role for longer periods of time. The longer one has invested in the caregiver role, the more committed they are to continuing that role. The strength of being Jewish as a predictor of institutionalization deserves comment. Within the framework of commitment theory, it may be possible that Jewish people are less likely to invest in the caregiver role, and more likely to invest in other late-life family relationships. This hypothesis requires further study. It is also possible that the institutionalization alternative has a more positive valence for Jews, since Jewish-sponsored institutional facilities are generally in the forefront of innovative environment and program development (Kahana and Kahana, 1984). It is interesting, yet somewhat troublesome, that the logistic function predicted residence in the community much better than it predicted institutional placement. Results suggest that other variables need to be added to the model to better explain institutional placement. Future research that focuses more carefully on the meaning of the caregiving role to the individual and on the personality of the caregivers may help to shed light on why the caregiver role is so fiercely embraced by some, but not by others. Furthermore, more careful attention to the role which sudden or severe changes in patient or caregiver functioning has on institutionalization may help to better predict risk for institutionalization. Generalization of study results must be made with caution, because data analyses include only those respondents for whom both baseline and one-year follow-up data were available. Predictions regarding institutionalization made from baseline data would not necessarily be applicable to respondents who elected to drop out of the study. As described earlier, drop-outs were less well-educated and older than people remaining in the study. Finally, future research, which builds on these results as well as on family stress theory, would benefit by including a broader definition of the stressor component. While this research limited stressor to characteristics of the impaired person, theoretically the construct includes multidimensional facets of the caregiver's life as well as stressors in the lives of other family members. Caregiving does not occur in a limited context; rather, it is one of many roles played by an individual. Similarly, model building would benefit from an enriched assessment of social support. As such, the antecedents and consequences of different dimensions of support could be more fully understood.
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Received June 1, 1989 Accepted December 21,1989
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