Journal of Gerontology: SOCIAL SCIENCES

Copyright 1990 by The Geromological Society of America

1990. Vol.45. No. 3. S102-111

Caregiver Needs and Patterns of Social Support Elizabeth C. Clipp1 and Linda K. George2 'GRECC, Durham VA Medical Center, and Department of Medicine, Duke University Medical Center, department of Psychiatry and Center for the Study of Aging and Human Development, Duke University Medical Center.

support is widely posited as a valuable resource SOCIAL comprising tangible and intangible forms of assistance that individuals receive from family and friends. Research in the last two decades has begun to validate the importance of social support for individual well-being (Caplan, 1974; Weiss, 1974) by demonstrating the role that support networks play in "buffering" individuals from the harmful effects of stress (Cassel, 1974; Cobb, 1976; Dean and Lin, 1977; Cohen and Syme, 1985). Persons under the press of family and work obligations are better able to manage because of comfort, reassurance, and direct assistance provided by concerned others. Just knowing that support is available is often enough to provide substantial relief. Can the assumption be made, however, that if one has a network, support will be provided when needed? Does need generate a mobilization of support? Do the neediest individuals get the most help? Dementia caregiving is a strategic arena in which to explore these questions because the stress of providing for a family member with Alzheimer's disease is often long-term and severe. Caregiver needs range from assistance with household tasks to complete respite from patient care responsibilities. Needs arise from responsibilities that have negative implications for emotional and physical health, such as observing the mental decline of a loved one, or monitoring new and sometimes frightening behaviors such as outbursts of hostility, wandering, and incontinence. The burden of care is understandably worse for caregivers who are in poor health or struggling with financial problems. The present study is short-term and prospective. It focuses on the needs of caregivers in relation to patterns of social support over a one-year interval. We begin by reviewing literature on caregiver needs and social support. In general, the longitudinal course of social support, despite nearly two decades of work, is virtually uncharted. A recent review in Science concludes that research on social support has neglected both age and life course patterns (Rowe and Kahn, 1987, p. 237). Without a temporal dimension, questions S102

regarding stability or change in support networks and the conditions under which alterations in supportive relations occur remain unanswered. Moreover, factors that predict continuity or discontinuity in social bonds have not been identified. Dementia caregiving, however, has recently been conceptualized as a chronic stress (Kiecolt-Glaser et al., 1987) and, in this regard, represents a strategic context in which to test the hypothesis that need generates support. Caregiver Need and Social Support Recent studies of caregiver burden and well-being have shown that caregivers have substantial needs and that social support is important to their well-being. Evidence suggests that caring for an elderly demented adult is an arduous task that may lead to financial difficulties, emotional strain, or physical health problems (Brody, 1981; Cantor, 1983; George and Gwyther, 1986;Zaritetal., 1980, 1985, 1986), but that these burdens are less severe for those having a strong support network (Zarit, Reever, and Bach-Peterson, 1980) or the perception of one (George and Gwyther, 1986; George, 1987). Recent studies also suggest that as the dementia sufferer's health deteriorates, a crucial factor for caregiver well-being is a supportive spouse or other household member (Cantor, 1983; Hanson, Sauer, and Seelbach, 1983). In fact, lack of a close confiding relationship has been identified as a factor that increases vulnerability to depression in the face of adversity (Lowenthal and Haven, 1968). As such, the corrosive effects of caregiving may be mediated or buffered (Dean and Lin, 1977; Ward, 1985) when supportive social ties are available. Gains from social support occur because network transactions assist in meeting physical, social, or psychological needs (Pilisuk and Parks, 1981). Caregivers are provided with feelings of personal affection, opportunities to relate meaningfully to others, and tangible assistance during times of need or crisis. Simply the presence of another is comforting under adverse conditions (Henderson, Byrne, and Duncan-Jones, 1981). Caregivers with strong supportive bonds

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Levels of caregiver need were used to predict four patterns of continuity and change in social support over a oneyear interval among 376 adults caring for a family member with Alzheimer's disease. Canonical correlation analysis was used to identify predictors of each support pattern from selected caregiver characteristics and needs (i.e., demographics, financial resources, physical and mental health, social and recreational activities, and aspects of the caregiving situation). Three significant canonical variates emerged for each type of support, instrumental and perceived adequacy of support, correctly classifying more than half of the caregiver sample. Results suggest that caregiver need does not necessarily elicit support. Needs do, however, predict several patterns of social support, the most common of which is characterized by stability (high or low support). Depending on type of support (instrumental or perceived adequacy), different configurations of predictors emerge.

CAREG1VER NEEDS, SOCIAL SUPPORT PATTERNS

Physically ill caregivers, especially those with chronic progressive conditions, are therefore more vulnerable and apt to need help. In terms of mental health, most caregivers are emotionally stable individuals who sometimes have difficulty coping with real problems. They may harbor feelings of exhaustion, discouragement, and isolation that seem relentless and, at times, overwhelming. Emotionally burdened caregivers may have symptoms subtle enough to escape the eyes of family or professionals, yet significant enough to constrict their coping repertoires and undermine their abilities to meet role-related challenges. They may be hampered by feelings of low morale or high anxiety; they may turn to alcohol or psychotropic medications for temporary relief. The degree to which such mental stresses exist should therefore be linked to different levels of need for support assistance. Needs involving social and recreational activities become important because the demands of caregiving often impinge upon caregivers' efforts to maintain accustomed levels of social and leisure activity. Extracurriculars such as club, church, and community meetings often must be abandoned to accommodate increasing time constraints. Moreover, patient care activities can drain energy and increase the effort required to connect with or renew existing social ties. As the disease progresses it may become increasingly difficult to do anything beyond necessary patient care. Finally, characteristics of the caregiving context such as type of care and duration of caregiving also should distinguish different levels of need for social support. For example, caregivers with live-in Alzheimer's sufferers should be among the hardest hit because their challenges are substantial and around-the-clock. Conversely, adult child caregivers (younger and often physically stronger than spouse providers) who have secondary responsibility for their ill relatives may need less assistance than others. These six categories of predictors are detailed in Figure 1. The overall question addressed in this study is: Can baseline predictors over a one-year interval predict which caregivers will have increased support, which will have decreased support, and which will have stable levels of social support? First, patterns of continuity and change in two distinct types of social support are delineated over a oneyear interval. Second, caregiver needs that discriminate among various patterns of support are identified. Third, predictors of instrumental support patterns are differentiated from predictors of perceived adequacy of support. METHODS

The sample. — The sampling frame for this research was the mailing list of the Duke University Family Support Program (FSP). FSP is a statewide technical assistance program for informal caregivers of older persons suffering from Alzheimer's disease or a related disorder. Caregivers known to FSP were identified from a variety of sources including a media campaign; contacts with community physicians, social service agencies, and nursing homes; health fairs, and other outreach activities. Survey instruments were mailed to all persons on the FSP mailing list who were currently providing some level of care to a memory-impaired older adult. The final sample consisted of 510 family care-

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may, therefore, be protected from intolerable burdens associated with their role through a giving and receiving of financial aid, assistance with caregiver tasks, and the exchange of social and emotional support that reinforces the caregiver's positive self-regard and belief that stressful situations are manageable. Can the assumption be made, however, that caregivers most in need of help receive the most support? Or that support to the caregiver remains constant over time? Unlike many difficult life events in which individuals benefit from supportive others, the stress associated with caregiving is often long-term and unrelenting. Responsibilities usually begin long before a dementia diagnosis is made, with early and often subtle signs of forgetfulness or behavioral instability. During subsequent phases of illness, which may range from months to years, increasing demands are placed upon the caregiver as symptoms become more pronounced and the care receiver's condition worsens. Family members and friends may offer concern and assistance early in the illness when functional status has not significantly deteriorated. Over time, as the dementia progresses and caregiver burden increases, support may diminish or seem nonexistent to the caregiver. Changes that occur in the care context may also influence patterns of support. Some care recipients die in the early phases of illness. A good number remain at home for years, living with their caregivers. Others make the institutional transition when the burden of care exceeds the provider's ability to cope. What happens to caregiver support across such transitions? Such processes are uncharted due to the limited nature of cross-sectional designs and a lack of emphasis on the dynamics of social relations. Based on a review of relevant literature and our previous research, we predict that six categories of caregiver characteristics and needs will be related to patterns of social support over a one-year interval. The first category includes basic caregiver demographic characteristics such as caregiver sex, age, marital status, education, employment status, and household size. These are standard survey items that are expected to relate to support patterns. For example, older caregivers are more likely than others to have physical conditions or illnesses of their own that increase the burden of caring for another. Their needs for instrumental support may therefore be greater than the needs of younger, healthier providers. By contrast, caregivers living in larger households may report lower needs for assistance than more isolated caregivers simply because extra hands are usually available. The remaining five predictor domains represent various caregiver needs — needs which should, depending on severity, elicit differential levels and temporal patterns of support. Economic resources or financial status may influence patterns of social support because adequate resources can cushion the impact of caregiving through the purchase of paid help. Inadequate resources can, on the other hand, cause additional stress for the caregiver who may, in addition to caregiving responsibilities, be managing the household budget. Physical health needs arise because caregiving imposes physical demands on even the healthiest of providers (e.g., interrupted sleep; controlling hostile outbursts).

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CARECIVER CHARACTERISTICS sex; age; education; employed; married

CARECIVER NEED: ECONOMIC RESOURCES perceived financial status; household si/c; household income

CARECIVER NEED: PHYSICAL HEALTH sclf-ralcd health; days sick; adequacy of self-care

SOCIAL SUPPORT (instrumental and perceived adequacy)

CARECIVER NEED: SOCIAL & RECREATIONAL ACTIVITIES satisfaction with leisure; telephone contacts; visits by friends/family; church; club attendance; lime for hobbies, relaxation

CARECIVER NEED: MANACEAHLE CARE CONTEXT spot se caregivcr; adu t child ea egiver; horn e care at both tes lings; nurs ing home care at both testings; patient en ered nurs ing home belwee n testings; SCCl ndary caregiving; patient di a t h bctvi een testings; dur it ton of caregiving

Figure 1. Categories of predictor variables based on caregiver characteristics and needs.

givers, representing 89 percent of the current caregivers on the FSP mailing list — an excellent response rate by usual social science standards (Dillman, 1978). It should be noted that eligibility for inclusion in the sample required only that the caregiver be providing some level of care to a memory-impaired adult. Thus, although a majority of caregivers in the sample lived with the individuals for whom they provided care, some respondents reported providing care to an institutionalized older adult; others indicated that the patient lived with another relative and that they provided assistance to the live-in caregiver. It is tempting to view the live-in caregivers as primary caregivers and the other caregivers as secondary caregivers. However, respondents did not always view their situations that way. Though all live-in caregivers described themselves as the Alzheimer's sufferers' primary caregivers and all caregivers assisting another relative described themselves as secondary caregivers, about one third of the caregivers of institutionalized patients described themselves as primary caregivers and two thirds described themselves as secondary caregivers. A social profile of the caregiver sample reveals the group to be mostly female (70%). The age range is 21 to 90, with an average age of 59. Though the age range is broad, most caregivers are middle-aged or old, spouses or adult children of the care recipients. Nearly 90 percent are married, with approximately equal and small proportions of widowed, divorced, and never married caregivers. Most are White

Measurement Issues Social support. — Our measures of social support follow the lead of Thoits (1982) and others (Cantor, 1979; Ward, LaGory, and Sherman, 1982) who argue that a multidimensional perspective of social support is needed to fully understand the contributions of informal networks to quality life. Two dimensions of social support were selected for analyses: an objective measure of "instrumental assistance received" and a subjective measure of the caregiver's "perceived adequacy" of social support received from family

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CARECIVER NEED: MENTAL HEALTH stress symptoms; positive affect: negative affect; usual "spirits"; life satisfaction; psycholropic drug use

(97%) and at least high school educated. In fact, more caregivers attended college than terminated their schooling prior to completing high school. Overall, the sample is not representative of the general adult population of North Carolina. Two factors appear to account for the discrepancies. First, caregiver selection is not a random process and, compatible with other studies (Brody, 1981; Cantor, 1983), this leads to a sample that is older and more female than the general population. Second, the outreach activities of FSP evidently result in a sample that is somewhat higher in socioeconomic status and includes a lower proportion of non-Whites than is typical of the larger population (a more detailed description of the sample appears in George and Gwyther, 1986). The sampling frame did not generate a random sample of caregivers of memory-impaired older adults. It did, however, yield a large heterogeneous sample from a broad geographic area. A major limitation is that there are few Black caregivers in the sample, and the results of this study may not be generalizable, therefore, to minority caregivers. The results should, however, provide clues as to whether or not similar hypotheses should be tested in those groups. Phase 1 of the study began in 1983. Current family caregivers (N = 510) were asked to complete a detailed questionnaire that provided information on the Alzheimer's sufferer (i.e., demographic characteristics, diagnosis, symptoms and their severity, and duration of illness) and the caregiver (i.e., demographic characteristics, mental and physical health, lifestyle and health-promoting behaviors, stress symptoms, subjective well-being, social and recreational activities, financial resources, knowledge of Alzheimer's disease, social support, use of community services, and coping strategies). Approximately one year later, Phase 1 respondents were requested to complete a follow-up questionnaire. Although several items were added after Phase 1 analyses, most measures were identical, permitting systematic cross-time linkages. A total of 376 caregivers participated in Phase 2, representing an adjusted response rate of 82 percent (adjusted for undeliverable surveys [n = 17] and caregiver mortality [n = 24]). The short-term interval of study (one year) is, for many caregivers, only a small part of a much longer period of caring for a dementia sufferer. One could hypothesize that support patterns would differ depending on when, in the caregiving process, the provider is interviewed. To examine this question, duration of caregiving is included in the model.

CAREGIVER NEEDS, SOCIAL SUPPORT PATTERNS

Predictors of social support patterns. — Thirty-two items measured at Time One form six predictor categories. The first includes standard survey items pertaining to basic caregiver demographic characteristics such as caregiver sex, age, marital status, education (measured as years of schooling), employment status (employed, not employed) and household size (number of persons living in home). Caregiver age is kept in continuous form rather than broken into age groups because there are no nonlinear relationships between caregiver age and measures of support. The remaining five predictor domains represent various caregiver needs — needs which should, depending on severity, elicit differential levels and longitudinal patterns of support. Economic resources. — The indicators of economic resources include household income (in dollars) and six questions concerning perceived economic security, a multi-item scale (alpha = .85) taken from the Economic Resources section of the OARS Methodology (Duke Center, 1978). Scale items elicit information concerning the adequacy of caregivers' resources in meeting medical and household emergencies, degree of difficulty in meeting bills, perceptions of financial status relative to age peers, perceptions of how well income meets personal needs, whether financial

resources permit the purchase of little "extras," and whether the caregiver's resources will be sufficient for future needs. Because of its relation to household expenditure, household size also is included. Physical health. — Information about the number of days in the past six months that the caregiver was too ill to perform his/her usual activities was obtained as a relatively objective measure of health. Subjective health was measured by a standard self-rated health item frequently included in social surveys and a rating of self-care adequacy. Mental health. — The study questionnaire includes 23 items in the mental health domain. The first is a global selfrating of the "usual spirits" of the caregiver. The remaining 22 items make up a multi-item scale (alpha = .85) of psychiatric symptoms that have, in previous studies, provided evidence of stress and psychological distress. Fifteen of the items constitute the Short Psychiatric Evaluation Schedule (Pfeiffer, 1979). The remaining seven items are from the Langer Twenty-Two Item Screening Scale (Langer, 1962). Items from Langer's scale were selected so as not to overlap in content with Pfeiffer's scale. Another measure in this domain is the Affect Balance Scale (Bradburn, 1969), which includes five items each of positive and negative affect. A single-item life satisfaction measure (Bradburn, 1969) also was used. Previous work suggests that the Affect Balance Scale measures transitory aspects of emotion, and the life satisfaction rating elicits more enduring feelings of subjective well-being (George, 1979; 1981). Caregivers also were asked about their use of psychotropic drugs, especially antidepressants and sedatives (drug names verified). Social and recreational activities. — Twelve survey questions provide information about social participation. Six items measure frequency of participation in various social activities: phone contacts with friends and relatives, visits with family and friends, church attendance, club and voluntary organization attendance, pursuit of hobbies, and relaxation time. For each of these objective reports, a second question requests information about the caregiver's degree of satisfaction with time spent in such leisure pursuits. The "satisfaction with leisure" questions form a multi-item scale (alpha = .77). Characteristics of the caregiving context. — With contextual dimensions in mind, information regarding duration of caregiving and the caregiver's relationship to the care receiver (spouse or adult child) was obtained. Data regarding dementia patient status (died between test dates, entered nursing home) and type of care (home or institutional) also were obtained. Caregivers whose patients died between test dates were included because of the importance of looking broadly at the entire caregiver group. Specifically, if the caregivers at Time One who were getting the most instrumental assistance were the caregivers whose patients were the most disabled and closest to death, their elimination from the analysis might eliminate caregivers with the highest

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and friends. The measure of instrumental assistance is a multi-item scale, identically measured at both testings. Respondents were asked to report the frequency with which family and friends provided 10 specific types of assistance, with responses to each item ranging from "never" (0) to "regularly" (4). Specific services include help when sick, help shopping or running errands, help with money or bills, help with household repairs, help with housework, financial or business advice, companionship, advice about problems, transportation, and help with meals. Responses to the 10 items were summed to yield a total scale score (range = 0-40; alpha = .88), with higher scores representing increased social support. The means for the instrumental support measure at Time One and Time Two are 15.92 and 19.50, respectively. This increase in direct assistance to the caregiver suggests that caregivers receive more help over time although the absolute levels of assistance are low. This series of questions regarding instrumental support is followed by a subjective item eliciting information about whether or not the caregiver perceives a need for more help from family or friends (0 = no, 1 = yes). A limitation of the perceived adequacy measure is that it is a single item rather than a multi-item scale. Earlier work using this indicator, however, suggests that it operates like other subjective aspects of social support (George, 1987; Colerick [Clipp] and George, 1986; George and Gwyther, 1986). The crosstime means show an increase in perceived need for support from 57 to 62 percent. It is interesting to note that there is virtually no association between the measures of objective and subjective social support (r = .01). This lack of correlation documents the independence between objective levels of social support and perceptions of the adequacy of those social support services, a pattern also noted by previous investigators (Ward, LaGory, and Sherman, 1982).

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levels of need for social support at Time One but with lower needs for support at Time Two.

RESULTS

Before presenting the results, it is important to discuss the degree of interrelatedness among the independent variables. Approximately 512 pairs were examined, with intercorrelations ranging from zero to .65. The large majority of these relationships (88%) were below .30, suggesting a substantial degree of independence among the predictors. Only 11 correlations (2.1%) reached .5. The strongest relationships were between being a spouse caregiver and caregiver age, r = .63; caregiver's emotional symptoms and caregiver's negative affect, r = .65; and home care at both testings and being a spouse caregiver, r = .56. Although these variables are each significant in the means analysis (Table 1), only one of each pair emerges in the canonical analysis (Table 2) because of their shared variance. Predictors of Instrumental Social Support Patterns A first step in the interpretation of the canonical correlation coefficients involves a comparison of group means (i.e., means on the independent variables for the groups comprising the dependent variables). Table 1 provides the group means of Time One predictors across four patterns of instrumental support and perceived adequacy of support. This bivariate perspective aids in the interpretation of the canonical coefficients and provides unique information as well, especially regarding the contrast between caregivers in low and high stability groups. However, when patterns in the canonical analysis are not observable in the means comparison it is because canonical coefficients are net of other predictors. "Telephone contacts," for example, is significantly different across the four instrumental support patterns. It does not, however, emerge in the canonical analysis because of its strong relationship with "visits from family

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Analytic Strategies The major analytic focus involves the prediction of social support patterns from Time One characteristics and situations. Caregivers with stable levels of social support (either high or low at both test dates) were compared to those who experienced significant increases or decreases in support over the one-year interval. Subgroups representing the support patterns were identified by splitting Time One and Time Two measures at the median. We examined the sample distribution by a cross-tabulation of Time One and Time Two scores. The diagonal of the matrix represented perfect stability, the upper off-diagonal represented increasing support, the lower offdiagonal represented decreasing support. If a caregiver changed two points or less out of a possible 40 points, they were considered stable. Changes of three or more points constituted change, either increasing or decreasing depending on direction of the change. Using this conservative cut-point system, most caregivers were stable and very few had large increases or decreases in social support. Most changes were in the moderate range (up or down 5 to 12 points). This procedure was applicable only to the instrumental support measure. We did not split at the median on the perceived adequacy of support measure; it is dichotomous. Looking first at instrumental support, the groups are: (a) low at both test dates (N = 122, 33%); (b) increase between test dates (N = 56, 15%); (c) decrease between test dates (N = 59, 16%); and (d) high at both test dates (N = 132, 36%). This distribution indicates that most caregivers report stable levels of support over time. Others were about equally split between increasing or decreasing support patterns. Trends for perceived adequacy of social support provide a comparable pattern: (a) low at both test dates (N = 153, 42%); (b) increase between test dates (N = 63, 18%); (c) decrease between test dates (N = 54, 14%); and (d) high at both test dates (N = 99, 26%). Again, the majority of the sample reports stable levels of support. Note, however, that a greater proportion perceives support to be stable and low than stable and high (42% versus 26%). Canonical correlation is one of several appropriate methods for analyzing patterns of change (George, 1982). In the present study, where the dependent variables are categorical (i.e., patterns of social support), canonical correlation analysis is more appropriate than residual change score analysis and is statistically identical to multiple discriminant analysis (Tatsuoka, 1971). There is a potential of K-l significant canonical variates, where K represents the number of dependent variables. Variates that emerge in the analysis are orthogonal to one another and composed of weights or partial correlation coefficients. Each canonical variate is a linear composite of weighted coefficients of the independent variables (e.g., Time One predictors) that predicts a given composite of weighted coefficients of the dependent variables (e.g., patterns of social support). The canonical R2 represents the amount of variance in a given dimension of the dependent variables explained by the weighted linear combination of independent variables. The statistical significance of the scal-

ing equation is assessed by Wilk's Lambda (George, 1982). In this study, the canonical correlation technique utilizes four patterns of change and stability in social support over a one-year interval as the dependent variables. These change and stability groups are used as dummy dependent variables (i.e., with values of 0 for nonmembership and 1 for membership). As shown in Figure 1, the independent variables include characteristics of the caregiver and five dimensions of caregiver need that are assumed to predict patterns of change and stability in social support over a short-term interval. The results are presented in two parts: Predictors of instrumental support patterns and predictors of perceived adequacy of social support patterns. Within each section we begin with a comparison of means based on all Time One predictors. This is followed by an interpretation of the canonical correlation analysis for that particular type of support (i.e., either instrumental or perceived adequacy). Independent variables with standardized coefficients greater than .35 (absolute value) will be discussed as the strongest predictors of group membership. Note that the canonical analyses (Table 2) have shorter lists of predictors than those that appear in the means comparisons (Table 1). The reason for this is that the canonical correlation procedure restricts the independent variables to those that make significant contributions to the canonical variates.

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Table 1. Sample Means for Time One Predictors Across Temporal Patterns of Social Support Cross-Temporal Pattern of Social Support Instrumental Time One Predictors"

Low Stable Decreasing Increasing High Stable I^ow Stable Decreasing Increasing High Stable .57 63.95 13.61 .32 .90

.73 58.89 12.59 .44 .91

.73 55.32 13.40 .49 .85

.80** 56.62** 13.78 .42 .90

.72 57.57 13.00 .42 .85

.69 61.46 13.49 .42 .93

.65 55.67 13.25 .40 .92

.70 62.51** 14.20* .35 .91

9.23 2.18 4.96

8.94 2.55 5.00

8.81 2.63 6.17

9.50 2.58** 5.72**

8.43 2.47 4.86

9.93 2.38 6.09

9.25 2.60 5.82

9.88** 2.36 5.85**

2.90 4.47 2.27

2.98 3.06 2.23

3.00 5.33 2.38

2.98 3.27 2.31

2.78 4.94 2.17

3.11 5.23 2.38

2.88 2.75 2.27

3.20** 2.42** 2.49

8.00 2.76 1.78 2.82 1.83 .27

9.39 2.71 2.12 2.84 1.94 .33

8.96 2.75 2.15 2.85 2.01 .30

7.80 3.09 1.72 3.01* 2.06* .34

10.43 2.41 2.47 2.72 1.81 .41

6.54 3.10 1.26 2.95 1.93 .23

9.02 2.92 2.42 2.83 1.92 .35

5.75** 3.43** 1.07** 3.16** 2.25** .16**

8.89 2.50 1.76 3.03 2.44 7.78 12.19

8.45 2.84 1.94 3.02 2.63 5.88 10.02

8.41 2.86 1.90 3.10 2.75 5.28 9.42

8.97 2.87* 2.08* 3.25 2.89* 6.68 9.80

7.61 2.54 1.69 2.94 2.44 5.25 8.91

9.46 2.79 1.97 3.21 2.67 6.64 12.85

8.83 2.77 1.83 3.17 2.88 6.19 8.92

10.20** 3.08** 2.34** 3.29 2.96** 9.33** 12.77**

.76 .12 .56 .15 .06 .13 .10 71.36

.56 .30 .37 .15 .12 .23 .13 68.44

.42 .47 .39 .19 .15 .20 .07 54.24

.48** .36** .25** .31** .09 .17 .18 69.68

.59 .31 .49 .16 .07 .20 .08 62.35

.69 .18 .41 .20 .15 .16 .08 76.48

.50 .40 .33 .25 .06 .19 .17 64.85

.53* 27** .26** .29 .10 .12 .23** 66.90

•Numbers in parentheses provide range of values on independent variables. For all variables, higher numbers reflect higher scores (e.g., 1 = lowest income category, 9 = highest income category). Group means are based on original variable metrics. *p=s .05;**p=S .01.

and friends", r = .53. The bivariate relationship suggests that caregivers who phone their friends and family also visit with them. There is no evidence, however, that one variable is causally prior to the other. Similarly, an examination of all variables that are significant in the means analysis (Table 1) but do not emerge in the canonical analysis (Table 2) suggests that none are causally prior to those that appear in Table 2. Specifically, there are 14 Time One predictors that have significant bivariate relationships with cross-temporal patterns of instrumental support (Table 1). In terms of caregiver characteristics, we find female caregivers most often in situations of high stable support. Conversely, caregivers who are male and older have stable low support. Economic resources at Time One also make a difference. Caregivers

who live in smaller households have stable low support and those whose household size is largest describe a pattern of increasing support over time. Similarly, caregivers with the lowest income have stable low support and providers with the most adequate incomes report stable high support. There is no relationship between physical health of the caregiver and patterns of instrumental support. Interestingly, however, caregivers' mental health does matter. Higher levels of usual spirits and life satisfaction characterize caregivers in the stable high support group; caregivers with the lowest scores on these variables most often describe their support as stable and low. In terms of social and recreational activities, caregivers with the greatest number of phone contacts, visits with friends and family, and amount of club attendance at Time One have stable high instrumental support. Similarly,

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Caregiver characteristics Sex (0 = male, I = female) Age (yr) Education (yr) Employed (0 = no, 1 = yes) Married (0 = no, 1 = yes) Caregiver need: Economic resources Perceived financial status (3-12) Household size (1-8) Household income (1-9) Caregiver need: Physical health Self-rated health (1-4) Days sick (1-99) Adequacy of self-care (1-3) Caregiver need: Mental health Stress symptoms (0-21) Positive affect (0-5) Negative affect (0-5) Usual spirits (1-4) Life satisfaction (1-3) Use of psychotropic drugs (0 = no) Caregiver need: Social and recreational activities Satisfaction with leisure (3-13) Telephone contacts (1-4) Visits with friends/family (1-4) Church attendance (1-4) Club attendance (1-4) Hours per week in hobbies (0-50) Hours per week relaxing (0-60) Caregiver need: Caregiving context Spouse caregiver (0 = no, 1 = yes) Adult child caregiver (0 = no, 1 = yes) Home care (Tl & T2) (0 = no, 1 = yes) Nursing home care (Tl & T2) (0 = no, 1 = yes) Secondary caregiving (Tl &T2)(0 = no, 1 = yes) Patient entered nursing home (0 = no, 1 = yes) Patient died (0 = no, 1 = yes) Length of caregiving (wks)

Perceived Adequacy

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Table 2. Canonical Variates Predicting Patterns of Social Support Instrumental Variate 1

Variate 2

-.23 .22 .25 .49

-.39 .25

Variate 3

Variate 1

.18

-.19 .33 .47

.26

.09 -.16 .20

.08

.40

.51

-.37

-.42

.23

-.13

-.16

-.23

-.10

-.66

-.10

.73

-.03

.34 .22

.47 -.40 -.04 .24 .04 .01 -.57 -.41 -.03 .25

.22 -.21 .07 .34 .14 .53 -.20 .62 -.02 .36 -.20 -.30

.08 -.64 -.10 .33 .30 .09 .01

.13 .17 -.72 .04 .28 .08 .03

-.36 -.43 -.48

.04 -.71 .54

.41

.41

-.58 .26 .53

.35 .07 .34

.23 -.28 -.07 .01 -.30 .56 .33 .17 -.02 -.14 -.23 .10

-.07 .36 -.23 .02 .18 .03 .06

-.70 .55 -.18 1.03 .59 .35 .01

-.68 .03 .43 .42 .44 .19 .01

.06 -.34 -.43 .39 .31 .10 .01

Variate 3

-.24 .39 -.06

.44

.10

-.26 .54 -.18 -.35 .11 .17 .29

Variate 2

"Effects presented in the form of standardized canonical correlation coefficients. See Table 1 for range of values of independent variables. C AII independent variables are statistically significant. d Effects presented are group centroids. b

caregivers reporting the lowest levels of these variables report low support across time. Finally, four aspects of the care context are significantly associated with instrumental support patterns. Spouse caregivers who provide home care at both testings are most likely to have stable low support. This contrasts with adult child caregivers who note increases in support over time and with caregivers whose care receivers were institutionalized at Time One and Two — they are more likely than others to receive stable high support. Note that duration of caregiving or the length of time a provider has been caring for a dementia sufferer is not significantly related to instrumental support patterns. Table 2 presents the canonical variates and scaling equations for the analyses based on both types of support. Instrumental support will be discussed first. Two significant and one marginally significant canonical variates emerge in the analysis. The first variate primarily discriminates between respondents reporting stable low support ( - .68) and those with either increasing support (.43) or stable high support (.42). The standardized coefficients for the independent variables indicate that income, perceived financial sta-

tus, telephone contacts, and being a spouse caregiver best discriminate between the groups, net of other independent variables. Specifically, caregivers with stable low levels of instrumental support are spouses with perceptions of financial insecurity. Frequent phone contacts with family and friends and higher income levels are more characteristic of increasing support or stable high support. The first variate explains about 19 percent of the variance in the four instrumental support patterns, p < .01. The second canonical variate also is significant, p < .01, explaining 10 percent of the variance that remains in the dependent variables after calculation of the first canonical variate. The second variate primarily contrasts the two change groups (decreasing, — .34; increasing, — .43) from the high stable group (.39). Predictor coefficients suggest that older caregivers, higher income, better perceptions of health, and stress symptoms are associated with changes in instrumental support (either low to high or high to low). Predictors of stable high instrumental support at Time One and Time Two include higher education, perceived economic security, having an institutionalized patient at both

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Independent Variables"-1'-'1 Education Household size Caregiver's usual spirits Telephone contacts Spouse caregiver Patient in nursing home (Tl and T2) Sex Satisfaction with leisure Positive affect Negative affect Life satisfaction Visits with friends/family Club attendance Time in hobbies Days sick Home care (Tl and T2) Age Income Self-rated health Perceived financial status Stress symptoms Use of psychotropic drugs Patient died Groups'1 Low stable social support Decreasing social support Increasing social support High stable social support Canonical R Canonical R1 P

Perceived Adequacy

CAREGIVER NEEDS, SOCIAL SUPPORT PATTERNS

Predictors of Perceived Adequacy of Support Patterns Table 1 provides the group means for the four patterns of perceived adequacy of support on the Time One predictors. Recall that perceived adequacy of support refers to caregivers' reported need for additional assistance (i.e., "Do you feel that you need more help from family and friends?"). Overall, the pattern of means makes a clear division between two groups: stable high versus stable low support. Caregivers who are older and more educated than others in the sample perceive their assistance from family and friends to be high and stable. In terms of physical health, caregivers with high stable support report the highest self-rated health, the lowest use of psychotropic drugs, and the lowest number of sick days. The contrast is even more striking for predictors from the mental health domain. Caregivers with the lowest number of stress symptoms, the highest positive affect, the lowest negative affect, the highest level of "usual spirits," and the highest reports of life satisfaction are also caregivers with stable high support. Indicators of social and recreational

activities act similarly. Caregivers who are most satisfied with time available for leisure, have the greatest number of telephone contacts and visits with friends and family, highest club attendance, and high levels of relaxation also have stable high support. Finally, aspects of the care context suggest that caregivers who are not involved with in-home care, particularly those caregivers whose care receivers died between test dates, are likely to report high stable support. The opposite pattern is true of caregivers who perceive their levels of social support as inadequate. These providers have the lowest perceptions of their financial status and the lowest incomes in the sample. Regarding physical health, they have the lowest self-rated health and highest use of psychotropic drugs. Indicies of mental health also present a down side, including the highest number of stress symptoms, lowest positive and highest negative affect, lowest "usual spirits" and life satisfaction. In terms of social and recreational activities, these caregivers have the least satisfaction with the amount of available leisure time, lowest number of telephone contacts and visits with family and friends, least amount of club and hobby involvement, and the least amount of time for relaxation. Most often, they are spouse caregivers who provide full-time care for the care recipient in the home. These characteristics are all predictive of stable low perceptions of the adequacy of social support. Table 2 summarizes the canonical correlation analysis based on patterns of perceived adequacy of support. Three significant canonical variates emerge in the analysis. The first variate primarily discriminates between the two stability groups: stable-high (1.03) versus stable-low ( - . 7 0 ) . The standardized coefficients for the independent variables indicate that the strongest predictors for membership in the stable-high group include older age and greater satisfaction with amount of leisure time. Conversely, providing home care at both test dates, low negative affect, and low club attendance are associated with consistently low levels of perceived support. This variate explains 35 percent of the variance. The second canonical variate explains an additional 9 percent of the variance that remains in the dependent variables after calculation of the first canonical variate. The primary contrast here lies between caregivers who perceive decreasing social support over time (— .64) and caregivers whose support is perceived to be high and stable (.33). Coefficients for the independent variables identify negative perceptions of economic status, high stress symptoms, low satisfaction with amount of leisure time, and increased number of sick days as strong predictors of decreasing support. Compatible with previous analyses, the predictors of high stable support include high life satisfaction, pursuing hobbies, and visiting friends and family. The third canonical variate contrasts caregivers who report increasing support ( - .72) with caregivers in all other groups (.13 low stable; . 17 decreasing; .04 high stable). This function explains 8 percent of the variance remaining in the dependent variables after calculation of the first and second canonical variates. The coefficients indicate that low satisfaction with leisure, negative affect, male caregivers, younger age, and poor self-rated health predict increasing social support.

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testings, or losing a patient through death between testings. The third canonical variate is only marginally significant, p < .06, and explains 3 percent of the variance after calculation of the first and second variates. The third variate discriminates primarily between the two change groups: decreasing (.36) and increasing (— .23). From this contrast we learn that higher income is most characteristic of caregivers who report increases in social support over time. Caregivers who perceive themselves in good health and economically secure, who live in larger households, who have more stress symptoms, and who experience their ill relative's death between test dates are more likely than others to lose support from Time One to Time Two. Note that patient death between testings cannot be the sole cause of decreasing support because the other predictors were measured prior to the death, at Time One. Taken together, the three canonical variates correctly classify nearly half (45.6%) of the caregiver sample. In summary, predictors of instrumental support patterns provide clues to two caregiving scenarios, one optimistic and the other much less favorable. The first includes caregivers whose support, in terms of instrumental assistance received, is either increasing over time or high at both testings. Compared to others in the sample, these caregivers have higher educational levels, higher incomes and perceptions of economic security. They are in frequent contact with friends and family. Their relatively advantaged situations may be due to the fact that few of these caregivers are shouldering the burden of home care. These caregivers have the lowest need of support and yet receive the most assistance. A less favorable picture is portrayed by caregivers whose instrumental support is either decreasing or low at both test dates. They are the oldest caregivers in the sample, often from large households supported by the lowest incomes. Still, they perceive their financial security as "good." These caregivers are, by and large, in-home providers who admit to more symptoms of stress than others in the sample. They are the neediest group in the sample and receive the least assistance. Note that neither scenario suggests that caregivers who most need help are most likely to receive it.

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SI 10

CLIPP AND GEORGE

DISCUSSION

This study examined four longitudinal patterns for two dimensions of social support in relation to six categories of predictors based primarily on caregiver needs. Basically, we are trying to predict the support patterns from Time One characteristics and situations. Keeping in mind the shortterm nature of the study, five findings merit discussion. First, several patterns of social support are observable in the caregiving process. For some caregivers, instrumental assistance and the perceived adequacy of help may remain stable, either at high or low levels, over time. For other caregivers, the burdens associated with providing care to a family member with dementia may entail changes in network contributions because family and friends differ in their abilities and willingness to assist the caregivers, especially over the long haul. In such cases, support may increase or decrease as the dementia progresses. Support patterns are not influenced, however, by duration of caregiving. Nor are they affected by severity of the dementia sufferer's symptoms. In fact, in preliminary analyses, no relationship was found between patient symptoms (measured by a 32-item dementia symptom scale) and patterns of support, a finding that suggests that caregivers having the least support do not necessarily have the most impaired sufferers. This lack of relationship between caregiver need and symptom severity has also been reported in earlier work (Colerick [Clipp] and George, 1986). Second, we can predict with some accuracy which caregivers are most likely to experience a particular support pattern over a short-term interval. Estimates are based on categories of caregiver need (i.e., financial resources, physical health, mental health, social and recreational activities, and aspects of the caregiving context) that are assumed to

influence the course of support over time. These predictors are quite reliable as demonstrated by their correct classification of approximately half of the caregiver sample. Despite relative success in selecting meaningful predictors, continued research using a greater range of caregiver needs should provide additional insight into the sources of change and stability in supportive relations over time. A third important finding concerns the two dimensions of social support: instrumental assistance and perceived adequacy of support. Recall that instrumental support refers to the amount of tangible assistance received by the caregiver (i.e., 10 specific tasks measured). Perceived adequacy of support measures whether or not the caregiver reports a need for additional help from family and friends. Findings reported here suggest that, depending on type of support, different configurations of predictors emerge. For example, caregivers who report low stable levels of instrumental support have greater needs in the financial realm, perhaps because they cannot afford to purchase direct aid and services. By contrast, caregivers who perceive a need for additional help are those with more pronounced mental health needs; they report negative affect and involvement with psychotropic drugs. It matters, therefore, what type of support is examined in relation to sources of influence on short-term patterns. A fourth point we want to emphasize, and one that is consistent with the majority of studies on support processes, is that caregivers in this sample demonstrate considerable stability over the short term in responses to questions about their support situations over time. Changes in social support — increases and decreases — do occur in the caregiving process but not in the majority of cases. Whether we are speaking of objective or subjective support, most caregivers fall into one of two patterns: "low stable" or "high stable," both of which can be distinguished by selected predictors — indeed, the strongest canonical variate for each type of support distinguished between the stable high and stable low support patterns. Finally, these findings suggest that need predicts both instrumental and perceived adequacy of support in an opposite manner from what might be desired. Caregivers with the greatest burden in terms of stress symptoms, poor health, and severe caregiving demands (as indicated by full-time inhome care of the demented family member) are more likely than other providers to perceive their levels of support as inadequate. In terms of instrumental support, our results also do not suggest that need triggers a mobilization of assistance. Indeed, an opposite process seems to work in which the neediest caregivers are those who receive the least tangible assistance. This suggests that something other than need operates to elicit social support from family and friends. One limitation of the study concerns the fact that we were only able to observe short-term changes. One year is not enough time to capture the full range of possible support patterns that caregivers may experience in the course of what is usually a lengthy disease process. One could argue that the majority of caregivers exhibited stability of support because only a short-term interval was observed. We want to emphasize, however, that there was also substantial change during

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Taken together, the three canonical variates correctly classify more than half (55.4%) of the sample. The predictors of perceived adequacy of social support patterns suggest that caregivers who are older and with good financial resources perceive strong support from family and friends (i.e., high) at both testings. They are better off mentally than other respondents as reflected in high scores on life satisfaction and evidence of positive affect. Their social needs are met through sufficient time for club attendance and interaction with family and friends. And, they report being satisfied with their leisure time. As in the case of high stable instrumental support, caregivers who lost their demented relative through death between testings have perceptions of high stable support. Again, in most cases, patterns observed in canonical correlation analysis reflect differences observable in the bivariate relationships shown in Table 1. In canonical analyses, however, the results are net of other predictors. Caregivers who provide full-time care for the dementia sufferer in the home have the greatest support needs. As a result of this stressful context, their mental health suffers — they are most likely to report low affect and the use of psychotropic drugs, either to calm themselves or as sleeping aids. These caregivers perceive the adequacy of their support to be low, either stable low or decreasing over time. Again, we have no evidence that the neediest caregivers get the most help or perceive that they do.

CAREGIVER NEEDS, SOCIAL SUPPORT PATTERNS

ACKNOWLEDGMENTS

This study is based on a program of research on the dynamics of caregiving. Support from the AARP Andrus Foundation is gratefully acknowledged. Address correspondence to Dr. Elizabeth C. Clipp, VA Medical Center (182), 508 Fulton Street, Durham, NC 27705. REFERENCES

Bradburn, Norman. 1969. The Structure of Psychological Weil-Being. Chicago: Aldine. Brody, Elaine M. 1981. "Women in the Middle." The Gerontologist 21:471-480. Cantor. Marjorie H. 1979. "Neighbors and Friends: An Overlooked Resource in the Informal Support System." Research on Aging 1:434— 463. Cantor, Marjorie H. 1983. "Strain Among Caregivers: A Study of Experience in the United States." The Gerontologist 23:597-604. Caplan, Gerald. 1974. Support Systems and Community Mental Health. New York: Behavioral Publications. Cassel, John. 1974. "Psychosocial Processes and 'Stress': Theoretical Formulation." International Journal of Health Services 4:471-482. Cobb, Sidney. 1976. "Social Support as a Moderator of Life Stress." Psychosomatic Medicine 38:300-314. Cohen. Sheldon and S. Leonard Syme. 1985. Social Support and Health. New York: Academic Press. Colerick |Clipp|, Elizabeth and Linda K. George. 1986. "Predictors of Institutionalization Among Caregivers of Alzheimer's Disease." Journal of the American Geriatric Society 34:493-498. Dean, Alfred and Nan Lin. 1977. "The Stress-Buffering Role of Social

Support.'' The Journal of Nervous and Mental Disease 6:403-417. Dillman, Donald A. 1978. Mail and Telephone Surveys: The Total Design Method. New York: John Wiley. Duke Center for the Study of Aging and Human Development. 1978. Multidimensional Functional Assessment: The OARS Methodology. Durham, NC: Duke University Center for the Study of Aging and Human Development. George, Linda K. 1979. "Subjective Weil-Being: Conceptual and Methodological Issues in the Study of Psychological Well-Being in Adulthood." The Gerontologist 19:210-216. George, Linda K. 1981. "Subjective Well-Being: Conceptual and Methodological Issues." In Carl Eisdorfer (Ed.), Annual Review of Gerontology and Geriatrics. New York: Springer. George, Linda K. 1982. "A Canonical Correlation Approach to the Analysis of Patterns of Change." Experimental Aging Research 8:67-72. George, Linda K. 1987. "Easing Caregiver Burden: The Role of Informal and Formal Supports." In R. A. Ward and S. S. Tobin (Eds.), Health in Aging: Sociological Issues and Policy Directives. New York: Springer. George, Linda K. and Lisa Gwyther. 1984. "The Dynamics of Caregiver Burden: Changes in Caregiver Well-Being Over Time." Paper presented at the Annual Meeting of The Gerontological Society of America, San Antonio, TX. George, Linda K. and Lisa P. Gwyther. 1986. "Caregiver Well-Being: A Multidimensional Examination of Family Caregivers of Demented Adults." The Gerontologist 26:253-259. Hanson, Sandra L., William J. Sauer, and Wayne C. Seelbach. 1983. "Racial and Cohort Variations in Filial Responsibility Norms." The Gerontologist 23:626—631. Henderson, Scott, Donald Glenn Byrne, and Paul Duncan-Jones. 1981. Neurosis and the Social Environment. New York: Academic Press. Kiecolt-Glaser, Janice K., Ronald Glaser, Edwin C. Shuttleworth, Carol S. Dyer, Paula Ogrocki. and Carl E. Speicher. 1987. "Chronic Stress and Immunity in Family Caregivers of Alzheimer's Disease Victims." Psychosomatic Medicine 49: 523-535. Langer. Thomas S. 1962. "A Twenty-Two Item Screening Score of Psychiatric Symptoms Indicating Impairment." Journal of Health and Human Behavior 3:269-277. Lowenthal, Marjorie and C. Haven. 1968. "Interaction and Adaptation: Intimacy as a Critical Variable." American Sociological Review 33:20-30. Pfeiffer, Eric. 1979. "A Short Psychiatric Evaluation Schedule: A New 15Item Monotonic Scale Indicative of Functional Psychiatric Disorder." In the proceedings of the Bayer-Symposium, VII, Brain Function in Old Age. New York: Springer-Verlag. Pilisuk. Marc and Susan Hillier Parks. 1981. "The Place of Network Analysis in the Study of Supportive Social Associations." Basic and Applied Social Psychology 2:121-135. Rowe, John W. and Robert L. Kahn. 1987. "Human Aging: Usual and Successful." Science 237:143-149. Tatsuoka, Maurice M. 1971. Multivariate Analysis: Techniques for Educational and Psychological Research. New York: John Wiley. Thoits, Peggy. 1982. "Conceptual, Methodological, and Theoretical Problems in Studying Social Support as a Buffer Against Life Stress." Journal of Health and Social Behavior 23:145-159. Ward, Russell A. 1985. "Informal Networks and Well-Being in Later Life: A Research Agenda." The Gerontologist 25: 55-61. Ward, Russell A., M. LaGory, and S. Sherman. 1982. "The Relative Importance of Social Ties" [Abstract of paper presented at the 35th Annual Scientific Meeting of The Gerontological Society of America, Boston]. The Gerontologist 22: [Special Issue], 123. Weiss, Roberts. 1974. "The Provisions of Social Relationships." In Zick Rubin (Ed.), Doing Unto Others. Englewood Cliffs, NJ: Prentice-Hall. Zarit, Steven H., Karen E. Reever, and Julie Bach-Peterson. 1980. "Relatives of the Impaired Elderly: Correlates of Feelings of Burden." The Gerontologist 20:649-655. Zarit, Steven H., Nancy K. Orr, and Judy M. Zarit. 1985. The Hidden Victims of Alzheimer's Disease: Families Under Stress. New York: New York University Press. 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 October 18, 1988 Accepted July 3, 1989

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the one-year interval. For example, 17 percent of the caregivers institutionalized their dementia sufferers between Time One and Time Two, and these caregivers experienced significant decreases in well-being. Also, 13 percent of the care recipients died between test dates, and bereaved caregivers experienced the greatest increases in well-being in the sample (George and Gwyther, 1984). Nonetheless, future studies covering longer periods would be valuable in tracing, with increased precision, caregiver needs in relation to patterns of social support. A second limitation concerns our two-dimensional measure of social support. Future studies might profitably include an emotional support scale, a measure of instrumental support that caregivers provide to network members other than the care recipient, and a multi-item scale of perceived adequacy of social support. Intangible forms of assistance such as reassurance to the caregiver and validation of the caregiver's perceptions of the situation also might merit attention. A third limitation concerns the nature of the sample. We did not have a probability sample of caregivers from a defined geographic area. Though the sample was large and quite heterogeneous in comparison to most, future studies might profitably sample specific populations (e.g., Black or Hispanic families) to broaden the generalizability of findings. Finally, data were obtained only from caregivers of older adults with Alzheimer's disease or a related dementia. It is possible that the course of social support is affected by the nature of the care receiver's diagnosis and, in the case of our sample, may be especially problematic due to the significant mental deterioration associated with dementia. Therefore, the findings reported here may not generalize to caregivers coping with the burdens associated with other chronic conditions such as rheumatoid arthritis or diabetes, where patients can be more active participants in their own care and interactive with potential helpers.

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Caregiver needs and patterns of social support.

Levels of caregiver need were used to predict four patterns of continuity and change in social support over a one-year interval among 376 adults carin...
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