INT’L. J. AGING AND HUMAN DEVELOPMENT, Vol. 30(4) 263-285, 1990
CAREGIVERS FOR ALZHEIMER’S PATIENTS : WHAT WE ARE LEARNING FROM RESEARCH
RONALD C. DILLEHAY MARLA R. SANDYS University of Kentucky
ABSTRACT
The research literature on adjustment by family members to providing care to victims of Alzheimer’s disease is new and expanding rapidly. The purpose of this review is to summarize the categories and methods of that research; to evaluate critically the state of knowledge these studies are producing; and to suggest ways of strengthening future investigations. The review is organized around psychological, social, and health factors as antecedents or correlates of similar categories of outcomes for caregivers. While there are some emerging relationships involving caregiver burden, depression, and psychological well-being, it is difficult to generalize about the determinants or correlates of the consequences of meeting caregiver responsibilities; this difficulty probably results from a failure to deal adequately with key concepts and circumstances of the caregiver. These conceptual and methodological shortcomings are discussed and suggestions for refinement made.
With the increasing awareness of Alzheimer’s disease and related disorders the focus on caregivers for Alzheimer’s patients has grown. This attention to caregivers is the result of several factors, among them a general increase in attention given to elderly adults in an aging population; the fact that most Alzheimer’s patients are cared for by their family members; and the difficulties in giving care to victims of Alzheimer’s disease. Programs providing professional support and self-help networks have been created in an attempt to lessen the burden of care, and research has increased apace in the last few years. The purpose of this article is to review and analyze that research from the perspective of both content and method in an effort to discuss evaluatively what has been done, to highlight 263 0 1990. Bavwood Publishing Co., Inc.
doi: 10.2190/2P3J-A9AH-HHF4-00RG http://baywood.com
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strengths and weaknesses, and to provide an overview of what we know from research about the behavior of caregivers.
PREDOMINANT, GENERAL CHARACTERISTICS OF THE RESEARCH Research on Alzheimer’s caregivers can be described in terms of several general characteristics, each of which has implications for our knowledge about caregiver behavior. First, most of this literature developed within the last five years. This is a limitation on the development of a stable research tradition, since such a brief time period does not allow for the development of research conventions or integrated social and psychological theory. Second, much of the research evolved in association with clinical or self-help support efforts, which were attempts to provide services rather than generate data under strict conditions of scientific investigation. Some research in this category can be loosely thought of as evaluation research, though it does not closely follow the requirements of technically adequate program evaluation in most cases. Third, with few exceptions, this literature developed (quite properly, one might believe) in gerontology circles, a consequence of which is that the perspective of researchers is developmental, with some medical sociology and clinical psychology mixed in. Although the reformulated learned helplessness hypothesis is an exception, there tends to be little infusion of theory from other social or psychological areas. A fourth general feature of the literature is that there is no standard usage of the term “caregiver”-a natural outgrowth of the fact that there are degrees of involvement by family members and others in providing care and the ways in which research samples have been obtained. The lack of a careful conceptualization of caregiver status is a real complication when attempting to formulate a research-based model of caregiving. Indeed, the degree of involvement, including freedom to lead one’s own life, at least partially, may be one of the most important features of the circumstances of caregivers in determining outcomes for patients and caregivers alike. There are obvious and subtle implications stemming from each of these general features of the literature. These features will be used from time to time in the discussion of the research, and they should be borne in mind by the reader. The literature on caregivers of elderly adults (not specifically Alzheimer’s patients) has recently grown at an astronomical rate, due partly to increased funding for clinical intervention and research on patients themselves, leading to greater attention to caregivers. To what degree will findings on caregivers for elderly adults in general apply to caregiving for Alzheimer’s patients? We can only speculate at this time, and while there are both similarities and differences, it is the differences between dementing illness in elderly adults and physicalhealth conditions that demand personal care, that attract one’s attention [l] . The cognitive, emotional, and behavioral deficits of Alzheimer’s disease place
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special demands on caregivers. Only as research continues will we be in a position t o assess their differential effects. In this discussion we focus specifically on studies of caregivers for Alzheimer’s patients though we included some studies of caregivers for dementia patients not specifically diagnosed as Alzheimer’s. A bibliography including both research on caregivers of Alzheimer’s patients and some of the related research on elderly adults is available [2] .
ADJUSTMENT TO CAREGIVING: A FRAMEWORK OF ANTECEDENTS AND CORRELATES The many aspects of adjustment to providing care for an Alzheimer’s patient can be grossly categorized into psychological, social, financial, and physical health. Examples of psychological factors are depression, anger, anxiety, resentment, optimism, and attitudes toward the patient and family members. Social outcomes include the relationship to the patient and other family members and ties outside the family. Financial outcomes include reduced income and increased expenses. Physical-health factors entail the myriad of largely unhealthy consequences of the demands of providing care under the circumstances imposed on most caregivers. Of course , some constructive changes, such as an increased closeness may develop with the impending loss of a loved one, or they might also occur in the psychological makeup or social circumstances of the caregiver, though these seem less probable. If these are the outcomes to be examined, what are the antecedents? We might identify general classes of antecedents in the same way as the outcome variables: psychological, social, financial, and physical health. Personality and attitudinal factors comprise the psychological category, including general knowledge about health and illness and specific knowledge about Alzheimer’s disease. In the social category factors such as the nature and quality of the prior relationship with the patient and relationships with family members and others outside the home are encompassed. Roles enacted by caregivers within their nuclear family (eg., as parents to young children) or in the household of the patient are particularly important social considerations. The ability to afford changes that might facilitate caregiving, such as bringing assistance into the home or modifying the physical environment, are potentially important financial determinants of adjustment to caregiving. The health of the caregiver prior to the onset of the Alzheimer’s condition could portend differential levels of adjustment to caregiving demands. This form of antecedent/ consequent framework is largely unarticulated in the literature. One suspected reason for this is that the type of research on causal relationships indicated by this framework imposes severe methodological constraints on investigators, and, as noted below, much of the research seems to have come about as an attachment to service programs. In addition, the research
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done to date is nearly all cross-sectional, which limits causal inference. In crosssectional investigations the variables examined may be conceptual antecedents, but they are methodological correlates. Finally, at the present time, only a severely limited theory has been brought to bear on the issues of caregiver adjustment.
CAREGIVERS AS A CLASSIFICATION Who are caregivers? What are the implications for understanding adjustment to caregiving based on the characteristics of subcategories of caregivers? A preliminary issue about caregivers as a category is definitional: What constitutes a caregiver? Definitions vary, which is a hazard for orderly use of the literature, sometimes being reserved for those who consider themselves or are seen by others as the primary caregiver, sometimes determined by the investigator, or at times left unspecified. In one investigation caregiver meant “principally responsible for providing or coordinating the resources required by the person with dementia, such as housekeeping, financial help and shopping” [3, p. 6501 . In another study “supporters” of demented, elderly adults were studied, and it is not clear how much care they were responsible for nor how much help they had [4] . George and Gwyther “required only that the caregiver be providing some level of care to a memory-impaired adult” [5]. The amount of responsibility for providing care is not an “academic” issue: for purposes of understanding the determinants of caregiver burden and adjustment, types of caregivers need to be differentiated carefully in these terms. A related feature of the definition concerns the living relationship between the caregiver and patient. Some research clearly deals with live-in caregivers while other studies include both resident caregivers and those whose Alzheimer’s patient is institutionalized [5-71 ;the differences are sometimes examined as a variable of interest [5].In one study utilizing a two-year follow-up, all caregivers lived with their patients at the first interview, while some caregivers lived with their patient and some did not at the time of the follow-up interview [8, see also 91 .Burden and strain obviously differ from one type of circumstance to another. As is the case for caregivers for all elderly adults, those caregivers for Alzheimer’s patients who have been studied tend to be women and spouses of the patients. For example, George and Gwyther [6] found 71 percent to be female, and most of the caregivers were “spouses or adult children (or children in-law)” [6, p. 41 . Zarit et al. interviewed twenty-nine caregivers, twenty-five of whom were women-eleven of themdaughters [3] .With few exceptions, a similar imbalance is found in other research [lo, 111. The burden for men or husbands is likely to differ from that of women or wives [8;but see also Fitting et al. [lo] for a more complex relationship, and Pratt et al. [7] who failed to find a sex difference]. Another aspect of this distinction between gender is willingness to report burden: are men/husbands
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less inclined to acknowledge burden than womenlwives? What of adult daughters?-they are relatively numerous among caregivers, and probably constitute a special case of role strain and conflict, particularly if they also have families of procreation to relate to. As knowledge advances, these distinctions need to be more clearly focused. We need, among other things, a typology of caregiving, probably best described in terms of roles, inter-role conflict, role sets, strain, and living arrangements.
The Nature of the Research Samples as a Limitation on Generalizability Much of the research done on caregivers for Alzheimer’s patients has employed clinical samples, and, frequently, the data represent an attempt to assess the impact of support or other intervention strategies. In addition, though some of the research has been done on caregivers for senile dementia patients not specifically diagnosed as having Alzheimer’s disease, this latter work should be tentatively accepted as revealing important information about caregivers for Alzheimer’s patients. Research by Zarit and his colleagues done at the Andrus Gerontology Center serves as an example. This work is programmatic research on caregiving for patients with senile dementia, a sizeable percentage of whom are probably Alzheimer’s patients [8] .But in Zarit et al., the sample is special in other ways as well [S] . Nearly 50 percent of the caregivers were male, contrasting with most other studies in which approximately 70 percent are female. Zarit et al. also reported a mean educational level of several years of college for both caregivers and patients. Respondents initially participated through clinics and through “membership lists from an Alzheimer’s Disease Advocacy group” [8, p. 2611. These characteristics are normal ones for recruiting participants. They clearly indicate cautions that should be borne in mind when generalizing to caregivers for Alzheimer’s patients as a whole, however: those relatives of patients and volunteers who are studied may be caregivers with greater problems of adaptation; they may also be middle-class whites. By identifying the issues surrounding the definition and characteristics of caregivers, we do not mean to cavil or make invidious comparisons with the available research. In a new research area, these are the pioneering investigations. We expect that research efforts will be more programmatic as the development of new knowledge becomes the driving force. Furthermore, some observers argue that the kinds of variations noted above will determine that only robust findings will survive across investigations. We do not believe this latter perspective serves us well.
EFFECTS ON CAREGIVERS With these caveats in mind, we organized the studies around their effects on caregivers, using psychological, social, and physical health as major categories of effects. It should be remembered that not only are many of the relationships
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based on static correlations, but the designated conceptual antecedents may in fact be affected in turn by the operation of the psychological, social, and physical-health factors in caregivers regarded as caregiver outcomes; in other words, some relationships between “conceptual antecedents” and “caregiver consequences” may be reciprocal. To the extent that models of caregiver behavior are discussed in the literature, they are more an identification of potentially influential factors than a theory [12-141.
Psychological Effects
Burden, stress, and strain - The concept of burden is central to interventions and research with caregivers. Typically, burden is the psychological state resulting from combinations of physical work, emotional pressure, social constraints, and financial demand accruing because of patient-care requirements. A distinction is often made between this subjective experience of the caregiver’s situation and the objective demands on the caregiver. For example, Morycz explicated the distinction between stress-the objective pressure-and strain-the experience of that pressure [13]. Several studies attempted to include an assessment of the level of patient functioning as an objective index of degree of impairment. Because it is the psychological experience of the objective situation that determines caregiver response, the subjective-objective distinction is important. One approach to studying burden has been direct assessment via self-report, utilizing an interview or questionnaire. The most commonly used instrument is the Burden Interview developed by Zarit and Zarit, which consists of twentytwo questions (though it has been used in different forms containing from twenty to twenty-nine items) about the caregiver’s feelings concerning the strain of caregiving [15] .The items, all worded so high scores indicate burden, contain five response alternatives: never, rarely, sometimes, quite frequently, or nearly always. The items contain high face validity. Their unidirectional wording raises a psychometric question, however, since high scores potentially reflect acquiescent response bias as well as burden. Where burden scores are the central, dependent variable or are correlated with other self-report measures, the problem of response bias may be particularly troublesome. Using what appears to be an early version of the Burden Interview, Zarit et al. studied burden of caregivers for older people with senile dementia (not necessarily Alzheimer’s patients) and examined a number of potential correlates [3] . Based on interviews with caregivers, scores were obtained on frequency of family visits, cognitive impairment, memory and behavior problems, functional abilities, and the duration of the illness. The only factor related to burden was the frequency of family visits reported by the caregivers. Burden scores were significantly lower for caregivers who reported more family visits than for caregivers who reported fewer family visits. But in a subsequent study utilizing
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interviews with a sample of thirty-one caregiver husbands and thirty-four caregiver wives, the frequency of visits by family members was not significantly related to burden at the time of the first or the second interview, two years later [8] . Subjective social supports, however, which combined perceived formal and informal supports, were significantly associated with burden the first time but not the second, Another difference between the two sets of interviews was that the retrospective rating of the quality of the relationship before the onset of the disease was negatively related to burden during the first interview but not during the second. An index combining the frequency of and intolerance for memory and behavior problems related significantly and positively to burden scores on both occasions. The presence of troublesome and more frequent problems covered by this index was associated with a greater burden. It is not clear in this study whether disagreement between results for the first and second interview data was due to the fact that only a subset (thirty-six of sixty-four) of the subjects was analyzed at the follow-up. Scott, Roberto, and Hutton, investigating a selected, clinic sample, related burden scores to the caregiver’s perception of adequacy of total support received from the family [16]. Categorizing perceived support as more than enough, enough, or not enough, and using a twenty-two-item version of the Burden Scale, the least burden was reported by the group receiving enough support (M = 27.8), while the greater burden was reported by both of the other groups (not enough support, M = 38.0; more than enough support, M = 37.2). MiniMental State scores for patients were used to control for objective demands on caregivers; an application of the Mini-Mental State scores requires the assumption that the cognitive abilities of the patient are a good predictor of demands. On an index of coping effectiveness developed specifically for the study, the group receiving more than enough support coped best, and the group without enough support coped least well. As with the previous comparisons, the Mini-Mental State score was used to control for the patient’s cognitive functioning. In another study using the Burden Interview, scores on burden were not found to be related to the caregiver’s age, sex, income, education, or the patient’s residence with the caregiver, nor were burden scores significantly related to the presence of one or more confidant relationships (r = .15) or membership in a support group (r = .27) [7] . (We do not understand why these correlation coefficients, though small, were reported as not significant, since the sample size was 240, and other correlations of similar size were significant.) Burden scores were significantly lower for respondents rating their current health as excellent or good (contrasted with fair or poor). Burden was also significantly correlated with several scales measuring coping strategies-the Family Crisis-Oriented Personal Evaluation Scales (F-SCOPES). Correlations between burden scores and scores on five of the eight scales on this instrument were small, .15 to 26, but significant. The five scales were: confidence in problem solving, reframing problems, passivity in problem solving, spiritual
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support, and extended family utilization. Caregivers who revealed greater confidence in their problem-solving abilities, and those who were more likely to reframe problems tended to have lower burden scores than caregivers who did not reveal the use of such coping strategies. Lower burden scores were also associated with caregivers who reported greater spiritual support and more extended family utilization. In contrast, the greater use of a passive strategy in problem solving was associated with higher burden. Reliance on friends, neighbors, and community services, as reflected in scale scores, were not significantly related to burden. Sex differences in burden scores appear in some studies but not in others. Zarit et al. found that husbands reported less burden than wives during the initial interviews [8] .At the time of the follow-up interview, women’s burden scores had significantly decreased, and men and women did not differ. The authors noted the “decrease was especially large for those women who had placed their spouse and whose initial burden at time 1 was higher” [8, p. 121 . We should also note that the group composition differed from the first interview to the follow-up interview: of the initial sample of thirty-three husbands and thirtyane wives, fifteen of the patients and one of the caregivers had died. The possible effect of attrition notwithstanding, the sex differences may be the result of differential difficulties associated with the caregiving role for males and females as noted by the authors. Studies failing to find gender effects associated with burden or finding highlyqualified effects were reported by F’ratt et al. and Fitting et al. [7, 101 .The former reported no differences in burden associated with the sex of the caregiver. Fitting et al. reported results qualified by age and severity of illness: “increasing severity of illness is associated with higher perceived burden in younger wives and older husbands” [lo, p. 2501. The authors discussed the differences between their results and those of previous studies in terms of the measures of functional impairment used (the classification in Fitting et al. is based on caregiver reports, and a scheme that “broadly ranks functional and neuropsychological severity” [ l o , p. 2511 and the greater disability of their own caregivers’ patients. Additional studies used the Burden Interview to assess change resulting from program interventions, but did not report analyses of other factors that indicate antecedents, correlates, or consequences of burden [ l 1, 171 . These studies are discussed in connection with social supports. Other investigators used different measures of the burden experienced by caregivers. Conceptualizing caregiver effects as family strain, Morycz developed a fourteen-item rating scale to be applied to interview data and used a global question of self-reported strain resulting from caring for the patient [ 131 . Morycz’s primary interest was in identifying determinants of the desire to institutionalize the patient; family strain was viewed as one determinant, but he did report correlates of the family-strain scale and the global burden question.
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An index of the physical labor required of the caregiver, another measure of the vigilance required in caring for the patient, and a third scale of problem severity were significantly and positively related to the two measures of burden. Related research on family burden due to caring for elderly patients suffering from dementia, not necessarily Alzheimer’s, was reported by Wilder et al., who found burden, defined as inconvenience associated with providing care for elderly, demented persons, associated with activity limitations in patients and patients’ abnormal behavior [ 141 .Though not based specifically on caregivers for Alzheimer’s patients, a number of studies of family burden in caregivers for elderly adults exist. For example, Robinson and Thurnher reported obligation for helping an elderly parent to be associated with lower morale [18] . Based on available research, it is difficult to draw confidently general conclusions about the antecedents or correlates of burden for caregivers of Alzheimer’s patients. In some cases it appears as though burden is related to the caregivers’ perception of the social supports they are receiving; in other instances this relationship to burden is absent or very complex. Zarit et al. found that the greater the caregiver-reported frequency of memory and behavior problems among patients and the greater the caregivers’ intolerance of these difficulties, the more severe the burden [8].Findings by Morycz support a relationship between perceived problem severity and burden [13], though other data suggest the relationship between problem severity and burden depends on the age and sex of the caregiver 1101. Coping strategies and their effectiveness are found to be related to burden, but the nature of that relationship is not yet clear. In one study, high levels of burden were associated with the sense of receiving more than enough support, while this group was also found to be high in coping effectiveness [16] .Results from another investigation show low but significant relationships between burden and coping styles [7] . Concerning sex differences, no conclusive statement regarding the relationship between the sex of caregivers and burden can be made.
Subjective well-being - George and Gwyther considered well-being the opposite side of the coin from caregiver burden but saw advantages to studying well-being as they conceptualize it rather than burden [ 5 , 6 ] .One advantage is that the measurement of well-being permits comparison with noncaregiver groups. Others cited are: the unconfounding of stressors involved with care and their effects, which are confounded with burden scores as typically operationalized, and assessment of multiple dimensions of well-being rather than a single, burden score. George and Gwyther studied physical health, mental health, participation in recreational and social activities, and financial resources as dimensions of well-being. Each of these indices is represented by more than one variable. They concluded that caregiving takes its greatest toll on mental health (and social-activity aspects of well-being), and that patient living arrangements, patientcaregiver relationships, and the caregiver’s perceived need for more social support are significant correlates of caregiver well-being.
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Using two brief measures of morale and mental health as dependent variables, Gilhooly examined the effects of the patient’s level of impairment (as independently measured by a mental-status questionnaire and by ratings by staff), frequency of contact with family members and friends, satisfaction with help from relatives, help from professional services, and the quality of the prior relationship between the caregiver and the patient [4]. The latter was based on ratings by the author using interview information about prior periods in the caregiver-patient relationship. The patients in this study attended a Scottish, day hospital five days a week. Morale (high scores were positive) and mental health (high scores indicated poor mental health) were correlated -.71, indicating high morale to be associated with good mental health. Overall, morale “tended toward the low end of the scale’’ [4, p. 381 -a finding reminiscent of depressive tendencies in caregivers [12,19] . Mental health, on the other hand, tended to be “good” or “mildly mentally impaired.” Higher morale was associated with: being a male caregiver, caring for a female patient, having been in the caregiverpatient relationship for longer period of time [cp. 81 ,receiving home-help service, and receiving visits from a community nurse. Better mental health was related to higher satisfaction with help from relatives, being a blood relative of the patient, being in the caregiving relationship for longer periods of time, and being a recipient of the home-help service. Gilleard , Boyd, and Watt examined the relationship between caregiver mood and perceived problems in caring for patients with dementia (not necessarily Alzheimer’s) who were attending fiveday hospital programs [20]. Three categories of moods derived from factor analysis-positive, negative, and depressive-and five problem areas, again based on factor analysis-dependency, demand, disturbance, wandering, and disability-were studied. Stepwise, multiple-regression analysis indicated demand problems (demands attention, disrupts social life, creates “clashes,” noisy, always questions) and dependency problems (dressing, feeding, communication, washing, not safe outside, not left alone) were significantly related to a two-item, global self-rating of burden. Other relationships studied were either not significant or highly qualified by complex interdependencies. In research with caregivers for patients with irreversible dementia, 60 percent of whom were diagnosed as Alzheimer’s patients, Rabins, Mace, and Lucas found nearly nine out of ten of their respondents indicated they suffered from chronic fatigue, anger, or depression [21] .Other problem areas mentioned by more than half of their interviewees were family conflict, loss of friends and hobbies, and/or no time for themselves. Several studies used standardized depression scales to assess aspects of psychological well-being. In one study Kahan et al. used the Zung Depression Scale along with the Zarit Burden Interview to examine the effects of group intervention with caregivers of Alzheimer’s patients [17] . At the time of the initial assessment, eighteen of the forty individuals studied were above the
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conventional cutoff for depression. The authors did not report the correlations among the Burden Interview, Zung, and other indices; this research is discussed further under support groups. Morycz reported that his measure of family strain (see above) was correlated .64 with the Zung Depression Scale, indicating greater strain associated with more depression [13]. In a related study Fiore et al. reported nineteen of forty-four caregivers met conventional criteria for a diagnosis of depression on the Beck Depression Inventory [12]. They also reported that Beck depression scores were negatively correlated with frequency of contact with others in a support network (r = .30)and positively associated with frequency of asking for support (r = .30);both were significant. Weiss, Nagel, and Aronson evaluated the applicability of commonly used depression scales to elderly adults over the age of seventy-five. Their discussion should prove useful for considering depression in caregivers [22] . Pagel et al., in the clearest effort to test theory in the study of caregivers for Alzheimer's patients, examined the reformulated ,learned-helplessnesshypothesis as a basis for predicting depression, hostility, and anxiety among caregivers [19]. These investigators initially interviewed sixty eight spousecaregivers (twenty-five males and forty-three females), fortyseven of whom were caring for their spouses at home. At a follow-up approximately ten months later, thirtyeight caregivers were reinterviewed, the smaller number resulted not from attrition but from "time limitation due to funding constraints" [19, p. 1741. The reformulated, learned-helplessnesshypothesis asserts that depression is a result of the perceived controllability of aversive , life events, and the attributions people make about the causes of their negative experiences. When people perceive little or no control over these life events, and the causes of aversive events are seen as internal (due to the attributor), global (affecting a number of factors) and stable, depression is a likely consequence. Pagel et al. expected, therefore, that differences in depressive states (and some other outcomes) would be due to attributional tendencies, specifically, that those inclined to exhibit depression are caregivers inclined, relatively, to feel a loss of control and to blame themselves for their spouse's condition; to believe the identified causes to be general and pervasive; and to consider them to be enduring. In fact, in this study the only causal attributions specifically dealing with learned helplessness concern internality/externality. The investigators did not analyze whether attributions were also global versus specific or stable versus short-lived. A number of specific aspects of perceived control were examined in the research. In addition, these investigators studied the relationship between caregiver optimism and the several dependent measures employed, which along with depression included anxiety and hostility. Results indicated that attributions of internality assessed during the first interviews were associated as expected with depression, anxiety, and hostility at both the initial interview and ten months later. Optimism also showed the hypothesized relationships to these indices of well-being. In addition, the
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perceived losses of control over the spouse’s behavior, over personal reactions, and over the caregiver’s life changes were associated with depression on both occasions. The only loss of control variable associated with hostility was perceived loss of control over life changes, which was associated with hostility both times. None of the loss of control variables was associated with caregiver anxiety. Furthermore, neither the cognitive variables nor optimism was related at either time to ratings by caregivers of the spouse’s ability to function in twelve areas of daily living, which was used as a measure of the patient’s functional status. Finally, 12-1 8 percent of the variance in caregivers’ depression on the second occasion was accounted for by combinations of the cognitive variables with optimism added, as assessed in the first interviews. It should be noted that Pagel et al. were examining variations among caregivers for an understanding of depression and other reactions, not comparing caregivers with other groups. They did report, however, normative information on the level of depression among the caregivers: twentyeight met conventional criteria for current depression, twenty-seven met the criteria at an earlier stage of caregiving, and thirteen never met the criteria. In summary, of the research targeted to caregiver well-being, the single measure most often used to assess well-being among caregivers was depression. Not surprisingly, greater strain and burden are associated with more depression. There is also evidence, however, that specific interventions directed at alleviating depression do help, and that burden is subsequently reduced as well. When more multidimensional conceptualizations of well-being are considered, it appears that the caregivers’ mental health is an area severely affected. Caregiver well-being is most likely to suffer when patients and caregivers live in the same residence, and when caregivers do not feel as though they are receiving enough social support. Finally, Pagel et al.’s finding that the tendency for caregivers to make internal attributions for patients’ impairment and to lack optimism is associated with more depression, anxiety, and hostility, and their results regarding the loss of control variables and psychological well-being could be considered in light of Pratt et al.’s [7] examination of coping strategies among caregivers [19]. Perhaps if caregivers who tend to make internal attributions for their patients’ impairments and who experience a loss of control could learn to “reframe” their problems and to achieve greater confidence in their problem solving abilities, the feelings of depression, anxiety and hostility would be reduced.
Social support and its effects on burden or well-being - The nature of social support discussed or studied as part of the research on Alzheimer’s caregivers varies considerably. The basic category, of course, is what others-friends, relatives, neighbors, agency personnel-do to help with the patient’s care, directly or indirectly, or do to meet the caregiver’s needs. Support may take different forms, such as providing patient care for periods of time or merely contacting the caregiver and expressing concern. A special category of social
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support is support groups, typically composed of other caregivers or relatives of Alzheimer’s patients. The primary purpose of such groups is to provide information and emotional support for the caregivers. In other instances, however, groups designated as support groups may be professional interventions conducted in a group setting [ l l , 171 .Respite care is still another category of social support in which a formal program takes the patient for a period of time temporarily relieving the caregiver of duties. In fact, participants in support groups also receive respite care for the period of time they participate in the group, since it is typically conducted without the patients. Necessarily, those caregivers who receive individual or group counseling are, for that period at least, also experiencing the effects of respite care. The overlapping components underscore the importance of a careful analysis and differentiation by type of social support. Institutional care should also be considered a form of social support inherently tied to the crosscutting factor of living arrangements involving the patient and the caregiver. In the absence of standard, operational definitions, the interested reader needs to look closely at the specification of social support in each piece of research. This problem appears endemic to studies of support for elderly adults in general [23] . An examination of the existing literature prompts the conclusion that the area of social support in research on caregivers for Alzheimer’s patients is a conceptual thicket needing careful husbandry. What we have at present in the typical piece of research on Alzheimer’s caregivers is a rather rudimentary indication of some kind of social support: whether or not caregivers are participating in support groups; whether they receive (with the patient) few or many family visits in a given time period; or a judgment about the adequacy of help received. What is needed i s a conceptualization and accompanying assessment of social support, as well as a careful analysis of the situation of the caregiver in other respects that have implications for the benefits and costs associated with different kinds of support. In a sophisticated analysis of social support and its effects on depression in Alzheimer’s caregivers, Fiore et al. proceeded toward the goal by studying five dimensions of support systems based on prior research [12; see also 241 . Data on these five dimensions were obtained by a lengthy semistructured interview. Being upset with these five dimensions of one’s support network related significantly and positively to depression. These five support-system dimensionscognitive guidance, emotional support, socializing, tangible assistance, and availability of a confidant-were also rated for helpfulness, though none of the helpfulness ratings related significantly to depression. This work by Fiore and her colleagues is noteworthy for another reason, too: other literature on support systems, on depression, and on well-being, as well as specific concerns about response bias, are taken into account. In their study of well-being, George and Gwyther included measures of perceived need for social support, and they found this variable to be related to
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all but one of their physical health, mental health, financial, and social measures of well-being: doctors visits by the caregiver in the last six months did not differ between those reporting a need for more social support and those not indicating such a need [5] . For all other variables, perceived need for social support was associated with lower scores on the well-being indices. The reader should note that George and Gwyther included as measures of social well-being some variables that are indexed as social support by other investigators (eg., number of telephone contacts or visits with family members). In research undertaken to examine the effects of social support, Gilhooly studied thirty-seven caregivers, twenty of whom lived in the same house as the patient they cared for [4]. Results indicated there was no significant relationship between two kinds of social support-frequency of contact with friends and with family-and either morale or mental health. She did report that satisfaction with social support was significantly related in expected directions to both morale and her measure of mental health. The failure of the data to show significant effects for some kinds of social-support measures is recurrent [7, 11,12, 171 ; we are clearly at a point in the development of research on Alzheimer’s caregivers at which the nature of the social support studied should be carefully defined and differentiated from other types of social support. In an effort to study the quality of existing social support, Scott et al. rated interview data obtained separately from caregivers and another family member, usually the closest kin to the caregiver, as to the amount of positive affect and negative affect exhibited by the family and by the other family members toward the caregiver [16] . Using these separate indices the investigators classified family-support styles into one of five types: cohesive, in which there was high positive affect and low negative affect; intense, with high positive and high negative affect; conflicted, with high negative affect and low positive affect; detached, low on both; and divided, with moderate ratings on both positive and negative affect. Of interest is the fact that caregivers and other family members tended to agree about the style of family support. Two-thirds of the caregivers (N = 21) and 72 percent of the other family members (N = 16) reported cohesive, family-support styles; the majority of the remainder classified themselves as divided. Specific effects on caregivers reported by Scott et al. were discussed in the section on burden. Other studies of burden and well-being included indices of social support of one kind or another measured as an individualdifference variable and were discussed in the foregoing sections if the analyses permitted an assessment of the relationship to burdenlwell-being. In a pre-post design, Zarit and Zarit, studying patients with dementia but not nceessarily Alzheimer’s, attempted to compare the effects of professionally-led support groups, on the one hand, with individual and family counseling, on the other [l 11 .The outcomes studied were burden, perceived memory and behavior problems, and symptoms experienced by caregivers. They attempted to employ a randomly constituted wait-list condition, but differential attrition for this
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group eliminated it from the analyses. Primary results indicated that participants who received individual counseling and a family meeting with the counselor significantly decreased their burden and reported symptoms; group-support intervention did not produce significant effects. It should be noted that the support groups in this study were not the typical, community support groups. These groups were led by professionals and were structured for specific purposes, as pointed out by the Zarits. Kahan et al., used the Burden Interview, the Zung scale to assess depression, and a Dementia Quiz, with a pretest-postest, control-group design [17] . The intervention was patterned after Zarit and Zarit’s account of group intervention (151, and therefore like the treatment tested in Zarit and Zarit where they found no effect [ l 11 . In Kahan et al., however, the support-group intervention yielded a significant decrease in burden, while the no-treatment, control caregivers increased their burden significantly. A complication in the interpretation of the results is that the experjmental group had much higher family-burden scores (46.1 v. 36.6) than the controls had initially, whereas after treatment the two groups were quite similar. The initial difference did not attain statistical significance, though it came close (t = 1.74). The investigators noted that there were more women in the experimental than in the control group, and women sometimes yielded higher burden scores than men. Do women also respond better to professionally-led, support-group interventions? We need some basis for accounting for the support-group effects found in Kahan et al., which are absent from Zarit and Zarit. Of course, the difference may lie in the way in which the groups were conducted. Kahn et al. also reported a significant decrease in depression for participants in the treatment group relative to the controls. A number of reports of support groups for caregivers for patients with Alzheimer’s have appeared that d o not deal with quantitative evaluations of the effects of the groups but that are useful in conceptualizing the nature and effects of support groups [25-271 .
Social Consequences for Caregivers As one of their dimensions of well-being, George and her colleagues included a number of social activities of the caregiver: phone contacts and visits with family and friends; frequency of church attendance; frequency of club attendance; time spent in hobbies; time spent relaxing; and satisfaction with social activities [ S , 61 . On each of these dimensions that could be compared with normative or extant data, the caregivers were less socially involved than the comparison groups. In addition, several of these social variables showed significant differences across groups defined in terms of the relationship between the patient and the caregiver (caregiver as spouse, adult child, or other relative) or defined in terms of living arrangements (living with the patient, patient in
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nursing home, o r other living arrangement). Most of these comparisons among different relationships to the caregiver and different living arrangements are difficult to interpret unambiguously, however, since analyses of variance were performed on sets of three means, and no simple effects were tested to determine the locus of the obtained significance. In addition, these investigators found that all o f these social involvements o r satisfactions were significantly less for those respondents who indicated a need for more social support compared to those who did not feel that need. Some important social effects of caregiving were also reported by Rabins et al. who found that more than half of their caregiver interviewees identified family conflict and loss of friends as problem areas [21]. In general, there is a paucity of research on the social consequences of being a caregiver for an Alzheimer’s patient. This is curious since the role is so socially confining due to the constant needs of the typical patient. On the other hand, the relative absence of this type of research may reflect the fact that some important dimensions of caregiving have not been differentiated so that a reasonable examination of social effects can be made. We believe a dimension of caregiving such as living arrangements may serve as a moderator variable for antecedent factors and social effects, For example, the social consequences of caring for an institutionalized patient will surely be different from those for a caregiver with twenty-four-hour responsibility.
The.Physical Health of Caregivers The closest research comes to examining the effects of caregiving on physical health is to obtain self-ratings of such variables as physical health, drug use, or reported physician visits. From these studies it is not possible to assess the extent to which the ratings are valid measures of actual health status or to determine whether they are cause or consequence of burden, well-being, and other factors. Pratt et al. did find higher self-ratings of physical health to be associated with lower burden scores [7]. In the research by George and her colleagues, caregivers’ reports did not portray themselves as less healthy physically than appropriate comparison groups, nor, in general, were the physical health measures of the Garegivers associated with other variables that were explored [S, 281 .
INSTlTUTlONALl ZATION Most of the care of Alzheimer’s patients takes place not in institutions, but in the community and is provided by female family members (though there may be a gender bias in the availability of caregiver respondents; see previous
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discussion). What are the predictors of actual institutionalization? In one of the more comprehensive, conceptual approaches, Morycz examined patient, caregiver, and environmental characteristics thought to affect caregivers’ experience of stress, termed family strain, with the expectation that strain is the significant determinant of desire to institutionalize [13]. In Morycz’s view desire to institutionalize would, in turn, be the major predictor of actual institutionalization. Desire to institutionalize correlated .53 with subsequent actual institutionalization within a one-year period. Other studies provide information on institutionalization. Zarit et al. reported higher burden scores for caregivers who subsequently institutionalized their spouses [8] .They also reported that four kinds of patient-behavior problems were associated with institutionalization: 1) difficulty doing simple tasks; 2) inability to dress themselves; 3) inability t o bathe themselves; and 4) incontinence. Wilder et al. found that the behavior of the patient, manifested as activity limitation, appeared to influence the decision to institutionalize: the greater the activity limitation, the greater the likelihood of institutionalization [ 141 . In a comparison of patients living with their caregivers over a one-year period with patients who had been placed in an institution, Gilleard et al. found that those still in the community had “a lower than average number of demand problems” as perceived by their caregivers [20] . Colerick and George examined patient characteristics, caregiver characteristics, and caregiver well-being as predictors of institutionalization of Alzheimer’s patients [28] .With a large, original data base of 510 families and the caregivers as the apparent source of information for all the variables, these investigators indicated that none of the reported patient characteristics (sex, age, living arrangements, diagnosis, illness duration, and symptoms) predicted institutionalization over the one-year period of the study. In addition, of a variety of “caregiver characteristics” (e .g., sex, age, social support, relationship to the patient), only being a spouse of the patient was significantly associated with institutionalizing the patient: spouses were significantly less likely to place their patients in professional care than were other caregivers. At a statistically marginal level (p
CAREGIVERS FOR ALZHEIMER’S PATIENTS : WHAT WE ARE LEARNING FROM RESEARCH
RONALD C. DILLEHAY MARLA R. SANDYS University of Kentucky
ABSTRACT
The research literature on adjustment by family members to providing care to victims of Alzheimer’s disease is new and expanding rapidly. The purpose of this review is to summarize the categories and methods of that research; to evaluate critically the state of knowledge these studies are producing; and to suggest ways of strengthening future investigations. The review is organized around psychological, social, and health factors as antecedents or correlates of similar categories of outcomes for caregivers. While there are some emerging relationships involving caregiver burden, depression, and psychological well-being, it is difficult to generalize about the determinants or correlates of the consequences of meeting caregiver responsibilities; this difficulty probably results from a failure to deal adequately with key concepts and circumstances of the caregiver. These conceptual and methodological shortcomings are discussed and suggestions for refinement made.
With the increasing awareness of Alzheimer’s disease and related disorders the focus on caregivers for Alzheimer’s patients has grown. This attention to caregivers is the result of several factors, among them a general increase in attention given to elderly adults in an aging population; the fact that most Alzheimer’s patients are cared for by their family members; and the difficulties in giving care to victims of Alzheimer’s disease. Programs providing professional support and self-help networks have been created in an attempt to lessen the burden of care, and research has increased apace in the last few years. The purpose of this article is to review and analyze that research from the perspective of both content and method in an effort to discuss evaluatively what has been done, to highlight 263 0 1990. Bavwood Publishing Co., Inc.
doi: 10.2190/2P3J-A9AH-HHF4-00RG http://baywood.com
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strengths and weaknesses, and to provide an overview of what we know from research about the behavior of caregivers.
PREDOMINANT, GENERAL CHARACTERISTICS OF THE RESEARCH Research on Alzheimer’s caregivers can be described in terms of several general characteristics, each of which has implications for our knowledge about caregiver behavior. First, most of this literature developed within the last five years. This is a limitation on the development of a stable research tradition, since such a brief time period does not allow for the development of research conventions or integrated social and psychological theory. Second, much of the research evolved in association with clinical or self-help support efforts, which were attempts to provide services rather than generate data under strict conditions of scientific investigation. Some research in this category can be loosely thought of as evaluation research, though it does not closely follow the requirements of technically adequate program evaluation in most cases. Third, with few exceptions, this literature developed (quite properly, one might believe) in gerontology circles, a consequence of which is that the perspective of researchers is developmental, with some medical sociology and clinical psychology mixed in. Although the reformulated learned helplessness hypothesis is an exception, there tends to be little infusion of theory from other social or psychological areas. A fourth general feature of the literature is that there is no standard usage of the term “caregiver”-a natural outgrowth of the fact that there are degrees of involvement by family members and others in providing care and the ways in which research samples have been obtained. The lack of a careful conceptualization of caregiver status is a real complication when attempting to formulate a research-based model of caregiving. Indeed, the degree of involvement, including freedom to lead one’s own life, at least partially, may be one of the most important features of the circumstances of caregivers in determining outcomes for patients and caregivers alike. There are obvious and subtle implications stemming from each of these general features of the literature. These features will be used from time to time in the discussion of the research, and they should be borne in mind by the reader. The literature on caregivers of elderly adults (not specifically Alzheimer’s patients) has recently grown at an astronomical rate, due partly to increased funding for clinical intervention and research on patients themselves, leading to greater attention to caregivers. To what degree will findings on caregivers for elderly adults in general apply to caregiving for Alzheimer’s patients? We can only speculate at this time, and while there are both similarities and differences, it is the differences between dementing illness in elderly adults and physicalhealth conditions that demand personal care, that attract one’s attention [l] . The cognitive, emotional, and behavioral deficits of Alzheimer’s disease place
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special demands on caregivers. Only as research continues will we be in a position t o assess their differential effects. In this discussion we focus specifically on studies of caregivers for Alzheimer’s patients though we included some studies of caregivers for dementia patients not specifically diagnosed as Alzheimer’s. A bibliography including both research on caregivers of Alzheimer’s patients and some of the related research on elderly adults is available [2] .
ADJUSTMENT TO CAREGIVING: A FRAMEWORK OF ANTECEDENTS AND CORRELATES The many aspects of adjustment to providing care for an Alzheimer’s patient can be grossly categorized into psychological, social, financial, and physical health. Examples of psychological factors are depression, anger, anxiety, resentment, optimism, and attitudes toward the patient and family members. Social outcomes include the relationship to the patient and other family members and ties outside the family. Financial outcomes include reduced income and increased expenses. Physical-health factors entail the myriad of largely unhealthy consequences of the demands of providing care under the circumstances imposed on most caregivers. Of course , some constructive changes, such as an increased closeness may develop with the impending loss of a loved one, or they might also occur in the psychological makeup or social circumstances of the caregiver, though these seem less probable. If these are the outcomes to be examined, what are the antecedents? We might identify general classes of antecedents in the same way as the outcome variables: psychological, social, financial, and physical health. Personality and attitudinal factors comprise the psychological category, including general knowledge about health and illness and specific knowledge about Alzheimer’s disease. In the social category factors such as the nature and quality of the prior relationship with the patient and relationships with family members and others outside the home are encompassed. Roles enacted by caregivers within their nuclear family (eg., as parents to young children) or in the household of the patient are particularly important social considerations. The ability to afford changes that might facilitate caregiving, such as bringing assistance into the home or modifying the physical environment, are potentially important financial determinants of adjustment to caregiving. The health of the caregiver prior to the onset of the Alzheimer’s condition could portend differential levels of adjustment to caregiving demands. This form of antecedent/ consequent framework is largely unarticulated in the literature. One suspected reason for this is that the type of research on causal relationships indicated by this framework imposes severe methodological constraints on investigators, and, as noted below, much of the research seems to have come about as an attachment to service programs. In addition, the research
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done to date is nearly all cross-sectional, which limits causal inference. In crosssectional investigations the variables examined may be conceptual antecedents, but they are methodological correlates. Finally, at the present time, only a severely limited theory has been brought to bear on the issues of caregiver adjustment.
CAREGIVERS AS A CLASSIFICATION Who are caregivers? What are the implications for understanding adjustment to caregiving based on the characteristics of subcategories of caregivers? A preliminary issue about caregivers as a category is definitional: What constitutes a caregiver? Definitions vary, which is a hazard for orderly use of the literature, sometimes being reserved for those who consider themselves or are seen by others as the primary caregiver, sometimes determined by the investigator, or at times left unspecified. In one investigation caregiver meant “principally responsible for providing or coordinating the resources required by the person with dementia, such as housekeeping, financial help and shopping” [3, p. 6501 . In another study “supporters” of demented, elderly adults were studied, and it is not clear how much care they were responsible for nor how much help they had [4] . George and Gwyther “required only that the caregiver be providing some level of care to a memory-impaired adult” [5]. The amount of responsibility for providing care is not an “academic” issue: for purposes of understanding the determinants of caregiver burden and adjustment, types of caregivers need to be differentiated carefully in these terms. A related feature of the definition concerns the living relationship between the caregiver and patient. Some research clearly deals with live-in caregivers while other studies include both resident caregivers and those whose Alzheimer’s patient is institutionalized [5-71 ;the differences are sometimes examined as a variable of interest [5].In one study utilizing a two-year follow-up, all caregivers lived with their patients at the first interview, while some caregivers lived with their patient and some did not at the time of the follow-up interview [8, see also 91 .Burden and strain obviously differ from one type of circumstance to another. As is the case for caregivers for all elderly adults, those caregivers for Alzheimer’s patients who have been studied tend to be women and spouses of the patients. For example, George and Gwyther [6] found 71 percent to be female, and most of the caregivers were “spouses or adult children (or children in-law)” [6, p. 41 . Zarit et al. interviewed twenty-nine caregivers, twenty-five of whom were women-eleven of themdaughters [3] .With few exceptions, a similar imbalance is found in other research [lo, 111. The burden for men or husbands is likely to differ from that of women or wives [8;but see also Fitting et al. [lo] for a more complex relationship, and Pratt et al. [7] who failed to find a sex difference]. Another aspect of this distinction between gender is willingness to report burden: are men/husbands
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less inclined to acknowledge burden than womenlwives? What of adult daughters?-they are relatively numerous among caregivers, and probably constitute a special case of role strain and conflict, particularly if they also have families of procreation to relate to. As knowledge advances, these distinctions need to be more clearly focused. We need, among other things, a typology of caregiving, probably best described in terms of roles, inter-role conflict, role sets, strain, and living arrangements.
The Nature of the Research Samples as a Limitation on Generalizability Much of the research done on caregivers for Alzheimer’s patients has employed clinical samples, and, frequently, the data represent an attempt to assess the impact of support or other intervention strategies. In addition, though some of the research has been done on caregivers for senile dementia patients not specifically diagnosed as having Alzheimer’s disease, this latter work should be tentatively accepted as revealing important information about caregivers for Alzheimer’s patients. Research by Zarit and his colleagues done at the Andrus Gerontology Center serves as an example. This work is programmatic research on caregiving for patients with senile dementia, a sizeable percentage of whom are probably Alzheimer’s patients [8] .But in Zarit et al., the sample is special in other ways as well [S] . Nearly 50 percent of the caregivers were male, contrasting with most other studies in which approximately 70 percent are female. Zarit et al. also reported a mean educational level of several years of college for both caregivers and patients. Respondents initially participated through clinics and through “membership lists from an Alzheimer’s Disease Advocacy group” [8, p. 2611. These characteristics are normal ones for recruiting participants. They clearly indicate cautions that should be borne in mind when generalizing to caregivers for Alzheimer’s patients as a whole, however: those relatives of patients and volunteers who are studied may be caregivers with greater problems of adaptation; they may also be middle-class whites. By identifying the issues surrounding the definition and characteristics of caregivers, we do not mean to cavil or make invidious comparisons with the available research. In a new research area, these are the pioneering investigations. We expect that research efforts will be more programmatic as the development of new knowledge becomes the driving force. Furthermore, some observers argue that the kinds of variations noted above will determine that only robust findings will survive across investigations. We do not believe this latter perspective serves us well.
EFFECTS ON CAREGIVERS With these caveats in mind, we organized the studies around their effects on caregivers, using psychological, social, and physical health as major categories of effects. It should be remembered that not only are many of the relationships
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based on static correlations, but the designated conceptual antecedents may in fact be affected in turn by the operation of the psychological, social, and physical-health factors in caregivers regarded as caregiver outcomes; in other words, some relationships between “conceptual antecedents” and “caregiver consequences” may be reciprocal. To the extent that models of caregiver behavior are discussed in the literature, they are more an identification of potentially influential factors than a theory [12-141.
Psychological Effects
Burden, stress, and strain - The concept of burden is central to interventions and research with caregivers. Typically, burden is the psychological state resulting from combinations of physical work, emotional pressure, social constraints, and financial demand accruing because of patient-care requirements. A distinction is often made between this subjective experience of the caregiver’s situation and the objective demands on the caregiver. For example, Morycz explicated the distinction between stress-the objective pressure-and strain-the experience of that pressure [13]. Several studies attempted to include an assessment of the level of patient functioning as an objective index of degree of impairment. Because it is the psychological experience of the objective situation that determines caregiver response, the subjective-objective distinction is important. One approach to studying burden has been direct assessment via self-report, utilizing an interview or questionnaire. The most commonly used instrument is the Burden Interview developed by Zarit and Zarit, which consists of twentytwo questions (though it has been used in different forms containing from twenty to twenty-nine items) about the caregiver’s feelings concerning the strain of caregiving [15] .The items, all worded so high scores indicate burden, contain five response alternatives: never, rarely, sometimes, quite frequently, or nearly always. The items contain high face validity. Their unidirectional wording raises a psychometric question, however, since high scores potentially reflect acquiescent response bias as well as burden. Where burden scores are the central, dependent variable or are correlated with other self-report measures, the problem of response bias may be particularly troublesome. Using what appears to be an early version of the Burden Interview, Zarit et al. studied burden of caregivers for older people with senile dementia (not necessarily Alzheimer’s patients) and examined a number of potential correlates [3] . Based on interviews with caregivers, scores were obtained on frequency of family visits, cognitive impairment, memory and behavior problems, functional abilities, and the duration of the illness. The only factor related to burden was the frequency of family visits reported by the caregivers. Burden scores were significantly lower for caregivers who reported more family visits than for caregivers who reported fewer family visits. But in a subsequent study utilizing
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interviews with a sample of thirty-one caregiver husbands and thirty-four caregiver wives, the frequency of visits by family members was not significantly related to burden at the time of the first or the second interview, two years later [8] . Subjective social supports, however, which combined perceived formal and informal supports, were significantly associated with burden the first time but not the second, Another difference between the two sets of interviews was that the retrospective rating of the quality of the relationship before the onset of the disease was negatively related to burden during the first interview but not during the second. An index combining the frequency of and intolerance for memory and behavior problems related significantly and positively to burden scores on both occasions. The presence of troublesome and more frequent problems covered by this index was associated with a greater burden. It is not clear in this study whether disagreement between results for the first and second interview data was due to the fact that only a subset (thirty-six of sixty-four) of the subjects was analyzed at the follow-up. Scott, Roberto, and Hutton, investigating a selected, clinic sample, related burden scores to the caregiver’s perception of adequacy of total support received from the family [16]. Categorizing perceived support as more than enough, enough, or not enough, and using a twenty-two-item version of the Burden Scale, the least burden was reported by the group receiving enough support (M = 27.8), while the greater burden was reported by both of the other groups (not enough support, M = 38.0; more than enough support, M = 37.2). MiniMental State scores for patients were used to control for objective demands on caregivers; an application of the Mini-Mental State scores requires the assumption that the cognitive abilities of the patient are a good predictor of demands. On an index of coping effectiveness developed specifically for the study, the group receiving more than enough support coped best, and the group without enough support coped least well. As with the previous comparisons, the Mini-Mental State score was used to control for the patient’s cognitive functioning. In another study using the Burden Interview, scores on burden were not found to be related to the caregiver’s age, sex, income, education, or the patient’s residence with the caregiver, nor were burden scores significantly related to the presence of one or more confidant relationships (r = .15) or membership in a support group (r = .27) [7] . (We do not understand why these correlation coefficients, though small, were reported as not significant, since the sample size was 240, and other correlations of similar size were significant.) Burden scores were significantly lower for respondents rating their current health as excellent or good (contrasted with fair or poor). Burden was also significantly correlated with several scales measuring coping strategies-the Family Crisis-Oriented Personal Evaluation Scales (F-SCOPES). Correlations between burden scores and scores on five of the eight scales on this instrument were small, .15 to 26, but significant. The five scales were: confidence in problem solving, reframing problems, passivity in problem solving, spiritual
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support, and extended family utilization. Caregivers who revealed greater confidence in their problem-solving abilities, and those who were more likely to reframe problems tended to have lower burden scores than caregivers who did not reveal the use of such coping strategies. Lower burden scores were also associated with caregivers who reported greater spiritual support and more extended family utilization. In contrast, the greater use of a passive strategy in problem solving was associated with higher burden. Reliance on friends, neighbors, and community services, as reflected in scale scores, were not significantly related to burden. Sex differences in burden scores appear in some studies but not in others. Zarit et al. found that husbands reported less burden than wives during the initial interviews [8] .At the time of the follow-up interview, women’s burden scores had significantly decreased, and men and women did not differ. The authors noted the “decrease was especially large for those women who had placed their spouse and whose initial burden at time 1 was higher” [8, p. 121 . We should also note that the group composition differed from the first interview to the follow-up interview: of the initial sample of thirty-three husbands and thirtyane wives, fifteen of the patients and one of the caregivers had died. The possible effect of attrition notwithstanding, the sex differences may be the result of differential difficulties associated with the caregiving role for males and females as noted by the authors. Studies failing to find gender effects associated with burden or finding highlyqualified effects were reported by F’ratt et al. and Fitting et al. [7, 101 .The former reported no differences in burden associated with the sex of the caregiver. Fitting et al. reported results qualified by age and severity of illness: “increasing severity of illness is associated with higher perceived burden in younger wives and older husbands” [lo, p. 2501. The authors discussed the differences between their results and those of previous studies in terms of the measures of functional impairment used (the classification in Fitting et al. is based on caregiver reports, and a scheme that “broadly ranks functional and neuropsychological severity” [ l o , p. 2511 and the greater disability of their own caregivers’ patients. Additional studies used the Burden Interview to assess change resulting from program interventions, but did not report analyses of other factors that indicate antecedents, correlates, or consequences of burden [ l 1, 171 . These studies are discussed in connection with social supports. Other investigators used different measures of the burden experienced by caregivers. Conceptualizing caregiver effects as family strain, Morycz developed a fourteen-item rating scale to be applied to interview data and used a global question of self-reported strain resulting from caring for the patient [ 131 . Morycz’s primary interest was in identifying determinants of the desire to institutionalize the patient; family strain was viewed as one determinant, but he did report correlates of the family-strain scale and the global burden question.
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An index of the physical labor required of the caregiver, another measure of the vigilance required in caring for the patient, and a third scale of problem severity were significantly and positively related to the two measures of burden. Related research on family burden due to caring for elderly patients suffering from dementia, not necessarily Alzheimer’s, was reported by Wilder et al., who found burden, defined as inconvenience associated with providing care for elderly, demented persons, associated with activity limitations in patients and patients’ abnormal behavior [ 141 .Though not based specifically on caregivers for Alzheimer’s patients, a number of studies of family burden in caregivers for elderly adults exist. For example, Robinson and Thurnher reported obligation for helping an elderly parent to be associated with lower morale [18] . Based on available research, it is difficult to draw confidently general conclusions about the antecedents or correlates of burden for caregivers of Alzheimer’s patients. In some cases it appears as though burden is related to the caregivers’ perception of the social supports they are receiving; in other instances this relationship to burden is absent or very complex. Zarit et al. found that the greater the caregiver-reported frequency of memory and behavior problems among patients and the greater the caregivers’ intolerance of these difficulties, the more severe the burden [8].Findings by Morycz support a relationship between perceived problem severity and burden [13], though other data suggest the relationship between problem severity and burden depends on the age and sex of the caregiver 1101. Coping strategies and their effectiveness are found to be related to burden, but the nature of that relationship is not yet clear. In one study, high levels of burden were associated with the sense of receiving more than enough support, while this group was also found to be high in coping effectiveness [16] .Results from another investigation show low but significant relationships between burden and coping styles [7] . Concerning sex differences, no conclusive statement regarding the relationship between the sex of caregivers and burden can be made.
Subjective well-being - George and Gwyther considered well-being the opposite side of the coin from caregiver burden but saw advantages to studying well-being as they conceptualize it rather than burden [ 5 , 6 ] .One advantage is that the measurement of well-being permits comparison with noncaregiver groups. Others cited are: the unconfounding of stressors involved with care and their effects, which are confounded with burden scores as typically operationalized, and assessment of multiple dimensions of well-being rather than a single, burden score. George and Gwyther studied physical health, mental health, participation in recreational and social activities, and financial resources as dimensions of well-being. Each of these indices is represented by more than one variable. They concluded that caregiving takes its greatest toll on mental health (and social-activity aspects of well-being), and that patient living arrangements, patientcaregiver relationships, and the caregiver’s perceived need for more social support are significant correlates of caregiver well-being.
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Using two brief measures of morale and mental health as dependent variables, Gilhooly examined the effects of the patient’s level of impairment (as independently measured by a mental-status questionnaire and by ratings by staff), frequency of contact with family members and friends, satisfaction with help from relatives, help from professional services, and the quality of the prior relationship between the caregiver and the patient [4]. The latter was based on ratings by the author using interview information about prior periods in the caregiver-patient relationship. The patients in this study attended a Scottish, day hospital five days a week. Morale (high scores were positive) and mental health (high scores indicated poor mental health) were correlated -.71, indicating high morale to be associated with good mental health. Overall, morale “tended toward the low end of the scale’’ [4, p. 381 -a finding reminiscent of depressive tendencies in caregivers [12,19] . Mental health, on the other hand, tended to be “good” or “mildly mentally impaired.” Higher morale was associated with: being a male caregiver, caring for a female patient, having been in the caregiverpatient relationship for longer period of time [cp. 81 ,receiving home-help service, and receiving visits from a community nurse. Better mental health was related to higher satisfaction with help from relatives, being a blood relative of the patient, being in the caregiving relationship for longer periods of time, and being a recipient of the home-help service. Gilleard , Boyd, and Watt examined the relationship between caregiver mood and perceived problems in caring for patients with dementia (not necessarily Alzheimer’s) who were attending fiveday hospital programs [20]. Three categories of moods derived from factor analysis-positive, negative, and depressive-and five problem areas, again based on factor analysis-dependency, demand, disturbance, wandering, and disability-were studied. Stepwise, multiple-regression analysis indicated demand problems (demands attention, disrupts social life, creates “clashes,” noisy, always questions) and dependency problems (dressing, feeding, communication, washing, not safe outside, not left alone) were significantly related to a two-item, global self-rating of burden. Other relationships studied were either not significant or highly qualified by complex interdependencies. In research with caregivers for patients with irreversible dementia, 60 percent of whom were diagnosed as Alzheimer’s patients, Rabins, Mace, and Lucas found nearly nine out of ten of their respondents indicated they suffered from chronic fatigue, anger, or depression [21] .Other problem areas mentioned by more than half of their interviewees were family conflict, loss of friends and hobbies, and/or no time for themselves. Several studies used standardized depression scales to assess aspects of psychological well-being. In one study Kahan et al. used the Zung Depression Scale along with the Zarit Burden Interview to examine the effects of group intervention with caregivers of Alzheimer’s patients [17] . At the time of the initial assessment, eighteen of the forty individuals studied were above the
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conventional cutoff for depression. The authors did not report the correlations among the Burden Interview, Zung, and other indices; this research is discussed further under support groups. Morycz reported that his measure of family strain (see above) was correlated .64 with the Zung Depression Scale, indicating greater strain associated with more depression [13]. In a related study Fiore et al. reported nineteen of forty-four caregivers met conventional criteria for a diagnosis of depression on the Beck Depression Inventory [12]. They also reported that Beck depression scores were negatively correlated with frequency of contact with others in a support network (r = .30)and positively associated with frequency of asking for support (r = .30);both were significant. Weiss, Nagel, and Aronson evaluated the applicability of commonly used depression scales to elderly adults over the age of seventy-five. Their discussion should prove useful for considering depression in caregivers [22] . Pagel et al., in the clearest effort to test theory in the study of caregivers for Alzheimer's patients, examined the reformulated ,learned-helplessnesshypothesis as a basis for predicting depression, hostility, and anxiety among caregivers [19]. These investigators initially interviewed sixty eight spousecaregivers (twenty-five males and forty-three females), fortyseven of whom were caring for their spouses at home. At a follow-up approximately ten months later, thirtyeight caregivers were reinterviewed, the smaller number resulted not from attrition but from "time limitation due to funding constraints" [19, p. 1741. The reformulated, learned-helplessnesshypothesis asserts that depression is a result of the perceived controllability of aversive , life events, and the attributions people make about the causes of their negative experiences. When people perceive little or no control over these life events, and the causes of aversive events are seen as internal (due to the attributor), global (affecting a number of factors) and stable, depression is a likely consequence. Pagel et al. expected, therefore, that differences in depressive states (and some other outcomes) would be due to attributional tendencies, specifically, that those inclined to exhibit depression are caregivers inclined, relatively, to feel a loss of control and to blame themselves for their spouse's condition; to believe the identified causes to be general and pervasive; and to consider them to be enduring. In fact, in this study the only causal attributions specifically dealing with learned helplessness concern internality/externality. The investigators did not analyze whether attributions were also global versus specific or stable versus short-lived. A number of specific aspects of perceived control were examined in the research. In addition, these investigators studied the relationship between caregiver optimism and the several dependent measures employed, which along with depression included anxiety and hostility. Results indicated that attributions of internality assessed during the first interviews were associated as expected with depression, anxiety, and hostility at both the initial interview and ten months later. Optimism also showed the hypothesized relationships to these indices of well-being. In addition, the
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perceived losses of control over the spouse’s behavior, over personal reactions, and over the caregiver’s life changes were associated with depression on both occasions. The only loss of control variable associated with hostility was perceived loss of control over life changes, which was associated with hostility both times. None of the loss of control variables was associated with caregiver anxiety. Furthermore, neither the cognitive variables nor optimism was related at either time to ratings by caregivers of the spouse’s ability to function in twelve areas of daily living, which was used as a measure of the patient’s functional status. Finally, 12-1 8 percent of the variance in caregivers’ depression on the second occasion was accounted for by combinations of the cognitive variables with optimism added, as assessed in the first interviews. It should be noted that Pagel et al. were examining variations among caregivers for an understanding of depression and other reactions, not comparing caregivers with other groups. They did report, however, normative information on the level of depression among the caregivers: twentyeight met conventional criteria for current depression, twenty-seven met the criteria at an earlier stage of caregiving, and thirteen never met the criteria. In summary, of the research targeted to caregiver well-being, the single measure most often used to assess well-being among caregivers was depression. Not surprisingly, greater strain and burden are associated with more depression. There is also evidence, however, that specific interventions directed at alleviating depression do help, and that burden is subsequently reduced as well. When more multidimensional conceptualizations of well-being are considered, it appears that the caregivers’ mental health is an area severely affected. Caregiver well-being is most likely to suffer when patients and caregivers live in the same residence, and when caregivers do not feel as though they are receiving enough social support. Finally, Pagel et al.’s finding that the tendency for caregivers to make internal attributions for patients’ impairment and to lack optimism is associated with more depression, anxiety, and hostility, and their results regarding the loss of control variables and psychological well-being could be considered in light of Pratt et al.’s [7] examination of coping strategies among caregivers [19]. Perhaps if caregivers who tend to make internal attributions for their patients’ impairments and who experience a loss of control could learn to “reframe” their problems and to achieve greater confidence in their problem solving abilities, the feelings of depression, anxiety and hostility would be reduced.
Social support and its effects on burden or well-being - The nature of social support discussed or studied as part of the research on Alzheimer’s caregivers varies considerably. The basic category, of course, is what others-friends, relatives, neighbors, agency personnel-do to help with the patient’s care, directly or indirectly, or do to meet the caregiver’s needs. Support may take different forms, such as providing patient care for periods of time or merely contacting the caregiver and expressing concern. A special category of social
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support is support groups, typically composed of other caregivers or relatives of Alzheimer’s patients. The primary purpose of such groups is to provide information and emotional support for the caregivers. In other instances, however, groups designated as support groups may be professional interventions conducted in a group setting [ l l , 171 .Respite care is still another category of social support in which a formal program takes the patient for a period of time temporarily relieving the caregiver of duties. In fact, participants in support groups also receive respite care for the period of time they participate in the group, since it is typically conducted without the patients. Necessarily, those caregivers who receive individual or group counseling are, for that period at least, also experiencing the effects of respite care. The overlapping components underscore the importance of a careful analysis and differentiation by type of social support. Institutional care should also be considered a form of social support inherently tied to the crosscutting factor of living arrangements involving the patient and the caregiver. In the absence of standard, operational definitions, the interested reader needs to look closely at the specification of social support in each piece of research. This problem appears endemic to studies of support for elderly adults in general [23] . An examination of the existing literature prompts the conclusion that the area of social support in research on caregivers for Alzheimer’s patients is a conceptual thicket needing careful husbandry. What we have at present in the typical piece of research on Alzheimer’s caregivers is a rather rudimentary indication of some kind of social support: whether or not caregivers are participating in support groups; whether they receive (with the patient) few or many family visits in a given time period; or a judgment about the adequacy of help received. What is needed i s a conceptualization and accompanying assessment of social support, as well as a careful analysis of the situation of the caregiver in other respects that have implications for the benefits and costs associated with different kinds of support. In a sophisticated analysis of social support and its effects on depression in Alzheimer’s caregivers, Fiore et al. proceeded toward the goal by studying five dimensions of support systems based on prior research [12; see also 241 . Data on these five dimensions were obtained by a lengthy semistructured interview. Being upset with these five dimensions of one’s support network related significantly and positively to depression. These five support-system dimensionscognitive guidance, emotional support, socializing, tangible assistance, and availability of a confidant-were also rated for helpfulness, though none of the helpfulness ratings related significantly to depression. This work by Fiore and her colleagues is noteworthy for another reason, too: other literature on support systems, on depression, and on well-being, as well as specific concerns about response bias, are taken into account. In their study of well-being, George and Gwyther included measures of perceived need for social support, and they found this variable to be related to
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all but one of their physical health, mental health, financial, and social measures of well-being: doctors visits by the caregiver in the last six months did not differ between those reporting a need for more social support and those not indicating such a need [5] . For all other variables, perceived need for social support was associated with lower scores on the well-being indices. The reader should note that George and Gwyther included as measures of social well-being some variables that are indexed as social support by other investigators (eg., number of telephone contacts or visits with family members). In research undertaken to examine the effects of social support, Gilhooly studied thirty-seven caregivers, twenty of whom lived in the same house as the patient they cared for [4]. Results indicated there was no significant relationship between two kinds of social support-frequency of contact with friends and with family-and either morale or mental health. She did report that satisfaction with social support was significantly related in expected directions to both morale and her measure of mental health. The failure of the data to show significant effects for some kinds of social-support measures is recurrent [7, 11,12, 171 ; we are clearly at a point in the development of research on Alzheimer’s caregivers at which the nature of the social support studied should be carefully defined and differentiated from other types of social support. In an effort to study the quality of existing social support, Scott et al. rated interview data obtained separately from caregivers and another family member, usually the closest kin to the caregiver, as to the amount of positive affect and negative affect exhibited by the family and by the other family members toward the caregiver [16] . Using these separate indices the investigators classified family-support styles into one of five types: cohesive, in which there was high positive affect and low negative affect; intense, with high positive and high negative affect; conflicted, with high negative affect and low positive affect; detached, low on both; and divided, with moderate ratings on both positive and negative affect. Of interest is the fact that caregivers and other family members tended to agree about the style of family support. Two-thirds of the caregivers (N = 21) and 72 percent of the other family members (N = 16) reported cohesive, family-support styles; the majority of the remainder classified themselves as divided. Specific effects on caregivers reported by Scott et al. were discussed in the section on burden. Other studies of burden and well-being included indices of social support of one kind or another measured as an individualdifference variable and were discussed in the foregoing sections if the analyses permitted an assessment of the relationship to burdenlwell-being. In a pre-post design, Zarit and Zarit, studying patients with dementia but not nceessarily Alzheimer’s, attempted to compare the effects of professionally-led support groups, on the one hand, with individual and family counseling, on the other [l 11 .The outcomes studied were burden, perceived memory and behavior problems, and symptoms experienced by caregivers. They attempted to employ a randomly constituted wait-list condition, but differential attrition for this
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group eliminated it from the analyses. Primary results indicated that participants who received individual counseling and a family meeting with the counselor significantly decreased their burden and reported symptoms; group-support intervention did not produce significant effects. It should be noted that the support groups in this study were not the typical, community support groups. These groups were led by professionals and were structured for specific purposes, as pointed out by the Zarits. Kahan et al., used the Burden Interview, the Zung scale to assess depression, and a Dementia Quiz, with a pretest-postest, control-group design [17] . The intervention was patterned after Zarit and Zarit’s account of group intervention (151, and therefore like the treatment tested in Zarit and Zarit where they found no effect [ l 11 . In Kahan et al., however, the support-group intervention yielded a significant decrease in burden, while the no-treatment, control caregivers increased their burden significantly. A complication in the interpretation of the results is that the experjmental group had much higher family-burden scores (46.1 v. 36.6) than the controls had initially, whereas after treatment the two groups were quite similar. The initial difference did not attain statistical significance, though it came close (t = 1.74). The investigators noted that there were more women in the experimental than in the control group, and women sometimes yielded higher burden scores than men. Do women also respond better to professionally-led, support-group interventions? We need some basis for accounting for the support-group effects found in Kahan et al., which are absent from Zarit and Zarit. Of course, the difference may lie in the way in which the groups were conducted. Kahn et al. also reported a significant decrease in depression for participants in the treatment group relative to the controls. A number of reports of support groups for caregivers for patients with Alzheimer’s have appeared that d o not deal with quantitative evaluations of the effects of the groups but that are useful in conceptualizing the nature and effects of support groups [25-271 .
Social Consequences for Caregivers As one of their dimensions of well-being, George and her colleagues included a number of social activities of the caregiver: phone contacts and visits with family and friends; frequency of church attendance; frequency of club attendance; time spent in hobbies; time spent relaxing; and satisfaction with social activities [ S , 61 . On each of these dimensions that could be compared with normative or extant data, the caregivers were less socially involved than the comparison groups. In addition, several of these social variables showed significant differences across groups defined in terms of the relationship between the patient and the caregiver (caregiver as spouse, adult child, or other relative) or defined in terms of living arrangements (living with the patient, patient in
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nursing home, o r other living arrangement). Most of these comparisons among different relationships to the caregiver and different living arrangements are difficult to interpret unambiguously, however, since analyses of variance were performed on sets of three means, and no simple effects were tested to determine the locus of the obtained significance. In addition, these investigators found that all o f these social involvements o r satisfactions were significantly less for those respondents who indicated a need for more social support compared to those who did not feel that need. Some important social effects of caregiving were also reported by Rabins et al. who found that more than half of their caregiver interviewees identified family conflict and loss of friends as problem areas [21]. In general, there is a paucity of research on the social consequences of being a caregiver for an Alzheimer’s patient. This is curious since the role is so socially confining due to the constant needs of the typical patient. On the other hand, the relative absence of this type of research may reflect the fact that some important dimensions of caregiving have not been differentiated so that a reasonable examination of social effects can be made. We believe a dimension of caregiving such as living arrangements may serve as a moderator variable for antecedent factors and social effects, For example, the social consequences of caring for an institutionalized patient will surely be different from those for a caregiver with twenty-four-hour responsibility.
The.Physical Health of Caregivers The closest research comes to examining the effects of caregiving on physical health is to obtain self-ratings of such variables as physical health, drug use, or reported physician visits. From these studies it is not possible to assess the extent to which the ratings are valid measures of actual health status or to determine whether they are cause or consequence of burden, well-being, and other factors. Pratt et al. did find higher self-ratings of physical health to be associated with lower burden scores [7]. In the research by George and her colleagues, caregivers’ reports did not portray themselves as less healthy physically than appropriate comparison groups, nor, in general, were the physical health measures of the Garegivers associated with other variables that were explored [S, 281 .
INSTlTUTlONALl ZATION Most of the care of Alzheimer’s patients takes place not in institutions, but in the community and is provided by female family members (though there may be a gender bias in the availability of caregiver respondents; see previous
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discussion). What are the predictors of actual institutionalization? In one of the more comprehensive, conceptual approaches, Morycz examined patient, caregiver, and environmental characteristics thought to affect caregivers’ experience of stress, termed family strain, with the expectation that strain is the significant determinant of desire to institutionalize [13]. In Morycz’s view desire to institutionalize would, in turn, be the major predictor of actual institutionalization. Desire to institutionalize correlated .53 with subsequent actual institutionalization within a one-year period. Other studies provide information on institutionalization. Zarit et al. reported higher burden scores for caregivers who subsequently institutionalized their spouses [8] .They also reported that four kinds of patient-behavior problems were associated with institutionalization: 1) difficulty doing simple tasks; 2) inability to dress themselves; 3) inability t o bathe themselves; and 4) incontinence. Wilder et al. found that the behavior of the patient, manifested as activity limitation, appeared to influence the decision to institutionalize: the greater the activity limitation, the greater the likelihood of institutionalization [ 141 . In a comparison of patients living with their caregivers over a one-year period with patients who had been placed in an institution, Gilleard et al. found that those still in the community had “a lower than average number of demand problems” as perceived by their caregivers [20] . Colerick and George examined patient characteristics, caregiver characteristics, and caregiver well-being as predictors of institutionalization of Alzheimer’s patients [28] .With a large, original data base of 510 families and the caregivers as the apparent source of information for all the variables, these investigators indicated that none of the reported patient characteristics (sex, age, living arrangements, diagnosis, illness duration, and symptoms) predicted institutionalization over the one-year period of the study. In addition, of a variety of “caregiver characteristics” (e .g., sex, age, social support, relationship to the patient), only being a spouse of the patient was significantly associated with institutionalizing the patient: spouses were significantly less likely to place their patients in professional care than were other caregivers. At a statistically marginal level (p
