Fam Proc 33:305-325, 1994

Alzheimer's Disease: The Impact of the Family on Spouses, Offspring,and Inlaws

LAWRENCE FISHER, Ph.D.a

MORTON A. LIEBERMAN, Ph.D.b

aCenter for the Study of Family & Health, Department of Family & Community Medicine, Box 0900, University of California-SanFrancisco, San Francisco CA 94143.bDepartment of Psychiatry, University of California-San Francisco.

This article reports the findings from a study designed to identify qualities of the multigeneration family system thataffected the relationship between the demands of Alzheimer's disease on the family and the health and well-being of (a)spouses, (b) offspring, and (c) offspring's spouses or "inlaws." Members of 97 families of patients with Alzheimer'sdisease, recruited from four University-affiliated Alzheimer's Centers, completed detailed questionnaires andparticipated in a 45-minute telephone interview to assess care-strain, personal stress, appraisals of three major domainsof family life (World View, Structure/Organization, and Emotion Management), and three health and well-being indices(Anxiety/Depression, Somatic Symptoms, and Well-Being). Multivariate multiple regression equations, run separately foreach of the three groups of family respondents and each of the three family domains, indicated: (1) no significantassociations between the severity of the elder's disease and family member health and well-being; (2) female familymembers reported poorer health and well-being than male family members; and (3) caregiver strain was negativelyassociated with family member health and well-being. Further, appraised family qualities were associated with thehealth and well-being of the three groups of respondents differently: directly for offspring, interactively with severity ofpatient disorder for inlaws, and not at all for spouses. The data suggested that some family qualities served a protectivefunction, whereas others exacerbated the negative effects of caregiving by affecting personal health and well-being. Thefindings are interpreted in terms of the different roles and expectations for caregiving placed on spouses, offspring, andinlaws. It is suggested that programs of intervention for patients with Alzheimer's and other chronic diseases shouldfocus on the multigeneration family as the context for care, rather than only on the primary caregiver.

A sizable clinical and research literature has documented the burdens that caring for an ill family member withAlzheimer's disease can place on caregivers (see review by Schultz, Visintainer, & Williamson, 1990). It has beenrepeatedly demonstrated, however, that there is little or no relationship between the severity of the Alzheimer's patient'sdisability and the caregiver's burden, health, and morale (Boss, Caron, Horbal, & Mortimer, 1990; Zarit, Reever,& Bach-Peterson, 1980). What then accounts for the ability of some caregivers to cope relatively effectively with patientmanagement and care while maintaining their own psychological equilibrium, and others to become overwhelmed andexperience major depression and other negative health consequences?

One approach to this question has been to expand the lens for viewing caregiving beyond the primary caregiver and toobserve the processes by which the multigenerational family systemcomprised of patient, spouse, adult children, andothersresponds to chronic disease in the elderly and manages care over time. Approximately 80% of all elderly haveliving children, and 78% to 90% of all older people with living children see them once a week or more often (Shanas,1979). Despite geographic distance in some instances, multi-generational families remain in close contact and maintainstrong emotional ties (Troll & Smith, 1976).

Some studies report that emotional support from siblings (Horowitz, 1985) and other relatives (Zarit et al., 1980)mediate the strain involved in caring for the ill elder, and other research has documented the problems of conflicted anddisturbed family relationships between caregivers and other family members. For example, Brody (1989) reported that45%-60% of primary caregivers complained that their siblings failed to help "as much as they should," and Matthews andRosner (1988) found that in many families sibling conflict was so extreme that responsibilities for care could no longer beshared. Stuifburgen (1990) reported that those families she characterized as being in "structured conflict" perceived agreater impact of the disease than those families she characterized as "cohesive." Strawbridge and Wall-hagen (1991) foundthat 40 of 100 adult offspring caregivers experienced serious conflict with other family members and that perceived familyconflict was positively correlated with caregiver burden and poor personal health.

The central focus of most "family" research regarding chronic disease in the elderly centers primarily on family conflict(Abel, 1987; Archbald, 1983; Frankfather, Smith, & Caro, 1981; Haussman, 1979; Smith, Smith, & Toseland, 1991). Twoexceptions, however, are worthy of note. First, Shields (1992) found that caregiver depression was significantly associatedwith the amount of anger and sadness expressed by other family members toward the primary caregiver during a family

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interaction procedure. The response of the family to the frustration and pain experienced by the primary caregiver was alsohighly correlated with the caregiver's depression. Second, Boss et al. (1990) described "family boundary ambiguity" as thedegree of uncertainty among family members regarding "who is in or out of the family and who is performing what rolesand tasks within that system" (p. 246). They suggested that high family boundary ambiguity sets the stage for failing to copewith the stresses of caregiving, as indicated by high levels of caregiver depression. An inability to accept the psychologicalloss of the chronically ill family member was viewed as preventing the family from reorganizing itself to cope with thechronic stresses of care. These studies suggest that qualities of the multi-generational family system are important inunderstanding the processes and costs of caregiving both to the primary caregiver and other family members.

A number of characteristics of the family system have been associated with its ability to manage other chronic disordersin children and adults (Campbell, 1986; Fisher, Ransom, Terry, et al., 1992c; Mc-Daniel, Hepworth, & Doherty, 1992;Ransom, 1981). For example, Hooley (1985) reviewed the literature on expressed emotion and documented the positivecorrelation between family criticalness, hostility, and overinvolvement with relapse rates in adult schizophrenics. Similarfindings have been reported for obesity (Fischmann-Havstad & Marston, 1984) and affective disorder (Hooley, Orley,& Teasdale, 1986). Medalie and Goldbourt (1976) reported that spouse support rated by husbands suffering from their firstmyocardial infarc-tion was negatively correlated with relapse rates and positively correlated with overall clinical coursefollowing hospitalization. Hauser, Jacobson, Wertlieb, et al. (1985) showed that family communication rated as"ego-enhancing" predicted positive management of adolescent diabetes over time.

In general, the most consistent findings are associations between characteristics of the family system and the response todiagnosis, the management and course of the disease, and the rate of relapse. Little evidence supports associations betweenfamily characteristics and the etiology of disease, and, similarly, there are minimal data linking specific aspects of the familywith specific health outcomes. Clearly, other exigencies influence how families manage chronic illness, such as the specificdemands for care posed by each disease (Rolland, 1984), the developmental stage of the family (Rolland, 1987), and thelimitations posed by the health care system (Coyne & Smith, 1991). But considering all of the pressures and strains facingthe family system when caring for a chronically ill family member, we suggest that the ongoing patterns of familyrelatedness, the internal environment of the family, and the beliefs, values, and expectations that underlie familyoperation provide the basic context for addressing specific, day-to-day patient management issues and planning forpatient care over time. Similar views have been expressed by others as well (Bengs-ton, 1989; Boss, 1988; Leahey& Wright, 1985; Shellenberger, Couch, & Drake, 1989).

We hypothesized that characteristics of the family system provide the framework for how a family responds to thedemands for care posed by an ill, elderly family member. For example, Patterson (1988) suggested a number of what shecalled "family resources" that facilitate the management of various stressers on the family and thus reduce the burdens ofcare and their effect on personal health and morale. Similarly, other aspects of the family system, such as highintergenerational fusion (Bray, Williamson, & Malone, 1984) and poor problem-solving skills, exacerbate the stresses ofcare on personal health. Our goal was to expand upon existing research by identifying some of the major familycharacteristics that are associated with the health and well-being of family members of ill elders. Also, we wished toestablish criteria of risk for families caring for an ill elder, and create a flamework for developing a family-based programof intervention. Further, we wished to document the physical and emotional costs of the disease and its management amongthose family members most involved, and to understand more about how the family and the disease interacted to affect eachfamily member differently. Consequently, we assessed three groups of family members: the patient's spouse, the adultoffspring, and the offspring's spouses ("inlaws").

We posed two specific questions. First, are there significant associations between the severity of the elder's disease, thespouse's, offspring's, or inlaws' gender, their caregiver strain, their personal appraisal of the family, and their health andwell-being? Here we were interested in seeing how illness severity, gender, and caregiver strain were associated withcharacteristics of the family so as to affect the health and well-being of the caregiving spouses, the adult children and theirspouses. Second, we asked if these associations varied as a function of position in the family (spouse, offspring, inlaw).This question addressed how the effects of the chronic disease cascaded through the family and how family members indifferent positions were affected.

METHODS

SampleThe sample was drawn from four San Francisco Bay Area University-affiliated Alzheimer's Clinics developed and

supported by the State of California Department of Health (there are nine clinics throughout the State and four in the BayArea). Each Clinic sees an average of 130 new patients and their families per year for diagnostic and management/careplanning, and most families are re-evaluated every 12 months. The Clinics are multidisciplinary, and they employ a uniformset of diagnostic protocols, including a neuropsy-chological, family, medical, psychiatric, and social evaluation. A home

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visit to assess the patient's behavior and environment, and associated laboratory and high technology diagnostic proceduresare also undertaken. Following a one- or two-day intensive diagnostic workup, the Clinic staff convenes to review theaccumulated data for a consensus diagnosis and to develop a management/care plan. Three to four weeks after the staffconference, a family conference is held, at which feedback regarding diagnosis and recommendations for management andcare are provided. All assessment data are entered into an electronic storage system using a common format shared amongall nine State-supported clinics.

Inclusion criteria were as follows: (1) the patient met the National Institute of Neurological and Communicative Diseaseand Stroke's diagnostic criteria for probable or possible Alzheimer's or Vascular Dementia; (2) the patient was living witha spouse in an independent community setting; (3) the spouse was capable of providing some modicum of care, defined asActivities of Daily Living tasks (ADL); (4) there were at least two adult offspring (age 21 years or older) living in the BayArea; (5) at least one of these offspring was currently living in an ongoing heterosexual relationship; and (6) there was atleast one third-generation family member (grandchild of patient). No restrictions were placed on social class or number andseverity of patient problems. Because of the significant impact of ethnicity on family operation, belief, and structure, andbecause our limited resources prevented recruitment of more than one ethnic group to permit comparisons, the sample wasrestricted to the largest ethnic group seen by the Clinics: those who identified themselves as Caucasian. These criteriaenabled us to collect a sample of multigenerational families with patients with probable Alzheim-er's or Vascular Dementiawho were not living in institutional settings, and who had immediate family of at least three generations living in the generalvicinity of the patient and spouse.

The sample consisted of 97 families, composed of 67 male patients and 30 female patients diagnosed as probable orpossible Alzheimer's or Vascular Dementia, their spouses, their offspring (69 males and 117 females), and their offspring'sspouses or "inlaws" (57 males and 40 females).1 Characteristics of the family sample are presented in Table 1, and patientcharacteristics are presented in Table 2. These data reveal a stable group of families with above-average education andconsiderable variation in number of family care hours provided. Table 2 indicates that patients displayed a variety ofdementia, psychiatric, neurological, and general problem behaviors.

Table 1Characteristics of the Sample

Patient Spouse Offspring Inlaws

Variable Mean/SD Mean/SD Mean/SD Mean/SD

Sample size (men-women) 97 (67-30) 97 (31-66) 186 (69-117) 97 (57-40)

Years in school 13.66/3.57 12.56/2.16 15.21/3.10 15.89/3.25

Years married* 43.44/10.74 43.44/10.74 13.72/9.37 13.72/9.37

Family size* 5.47/1.44 5.47/1.44 4.16/1.09 4.16/1.09

ADL/IADL Care hours provided 6.20/10.91 3.90/8.62

Patient problem behaviors** 17.44/9.54 17.99/10.69 19.61/11.50* Years married and family size refer to two families: one comprised of the patient, spouse, and their adult offspring, the second

comprised of the offspring-inlaw family.** Number and intensity of 17 problem behaviors exhibited by the patient, each rated on a 3-point scale.

Table 2Patient Characteristics

Measure Description

Mini Mental Status Examination Mean = 18.40; SD = 6.7; range = 2 to 29, with a maximum negative score of30.

Blessed-Roth Dementia Rating Scale Percent of patients rated by Clinic staff found to have problems: finding familiarstreets = 58%; with household tasks = 67%; coping with money = 49%;remembering short lists = 94%; finding way indoors = 15%; interpretingsurroundings = 28%; recalling recent events = 91%; dwelling in the past = 40%;eating = 6%; dressing = 11%; with bowel or bladder control = 12%.

Psychiatric symptoms Percent of patients judged by Clinic psychiatrist to display: delusions = 21%;hallucinations = 4%; insomnia = 6%; agitation = 37%; depression = 43%;apathy = 40%.

Neurological symptoms Percent of patients judged by Clinic neurologist to display: motor dysfunction =

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7%; extrapyramidal signs = 2%; gait disorders = 7%; amnesia = 96%; agnosia =16%; aphasia = 44%; apraxia = 28%.

General problem behaviors Percent of patients judged by Clinic staff to display the following problembehaviors: memory = 100%; wandering = 9%; agitation = 32%; unprovokedanger = 21%; personality changes = 57%; family problems = 35%; self-careproblems = 38%.

Each family member reported the average number of hours per week for the last 3 months spent in direct patient care,defined as ADL/IADL (instrumental activities of daily living) services. Of the 97 families, 80% of offspring and inlawsre-ported providing some carehours weekly; only five families reported no offspring or inlaw help. The mean number ofreported carehours per week was 4.5 for male offspring and 7.1 for female offspring (F = 3.60, df = 2/186, p = .02); amonginlaws, reported carehours was 3.2 for males and 5.1 for females (F = 1.33, df = 2/97, ns).

Of the eligible families contacted, 6% of spouses refused to participate and another 13% dropped out before completingthe research protocol. Among offspring, 8% declined to participate and another 21% dropped out; for inlaws thecomparable figures were 11% and 31%.

Two methods were used to assess bias in the sample. First, we compared our sample with over 5,000 patient/familiesevaluated by the nine State Clinics since 1986, using the computerized patient/family data storage system. At least 50% ofthese cases met all six inclusion criteria listed above. For example, 86% of all patients were diagnosed as possible orprobable Alzheimer's or Vascular Dementia, 49.1% resided with a spouse in the community, and 87.2% received someADL/IADL care from their spouses. We reduced the 5,000 State sample cases to those patients who met the inclusioncriteria listed previously, and compared them to the 97 patients in our sample. Our study sample had significantly lowerBlessed-Roth Dementia Rating Scale scores, fewer psychiatric and neurological symptoms, and fewer caregiving problemsthan the comparable group of patients on the State data system.

Second, we used t-tests to compare families that refused or dropped out of our study with families that completed theprotocol. There were no significant differences between the two groups in patient age, income, education, characteristics ofthe illness, number of caregiver problems, or use of community services for the patient or caregiver. Only one indicatorsignificantly differentiated the two family groups: patients in the refuser/dropout group had a greater number of psychiatricsymptoms than patients in the families that completed the protocol.

In sum, we find that the patients in our sample had fewer major symptoms and caregiving problems than those whodropped out or refused to participate, as well as those previously evaluated by the Clinics. An inspection of Tables 1 and 2,however, suggests that despite the somewhat fewer patient problems and symptoms, there was a sufficient range of patientdifficulties to make further analysis with this sample feasible. Indeed, this provided a conservative test of the questionsposed above, since we assumed that fewer patient problems placed fewer demands for care on family members than didmore patient problems.

ProceduresRecruitment and informed consent were obtained after the family conference. Families were told that we were interested

in learning more about how they were managing, the problems they were encountering, and what family life was likeconsidering the added burdens of caring for a demented elderly patient. If the family agreed to participate, spouses,offspring, and inlaws were given a 322-item questionnaire and a stamped, return-address envelope. Family members notpresent at the conference were recruited by phone and mail. The questionnaire contained scales (see below) concerningbackground information, family beliefs and operation, current perceived stress, role strains, health and well-being, andevaluations of patient problems. For offspring and inlaws, "family" was defined as the patient's nuclear family, to bedistinguished from the off-spring-inlaw, offspring-inlaw, second-generation family.

One project staff member was assigned to assess all members of the same family. This staff member reviewed eachreturned questionnaire for completeness and arranged an appointment for a 45-minute telephone interview with eachparticipating family member. The telephone interview was semi-structured and focused on a detailed discussion of familyemotional life, family operation, and family decision making concerning the care of the patient. We originally wereskeptical about whether we could collect this quantity of information by telephone and whether family members would bewilling to talk with us on the telephone for an extended period of time (between 30 and 90 minutes). We found that familymembers were eager to share their experiences and they seemed grateful that someone was willing to listen to their stories.Family members were debriefed at the end of the telephone interview and a letter thanking them for their participation wasmailed several days later. Family members were asked not to discuss their responses to both the questionnaire and thetelephone interview with other family members until after completion of the study.

The research questions posed above called for the assessment of four groups of "predictor" variables plus one interactionterm (severity of disease, respondent gender, caregiver strain, family characteristics, plus the interaction between family

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characteristics and severity of disease), and respondent health and well-being. For purposes of presentation, we first reviewthe family assessment flamework we employed, followed by a description of the remaining variables and measures.

Family Assessment FrameworkOur primary aim in this research was to study how perceived characteristics of the family system influenced the health

and well-being of the family members involved in the care of the elderly patient. An immediate issue arose concerning howto devise a family assessment strategy that was both meaningful theoretically and relevant to the clinical setting ofAlzheimer's disease. Fisher, Terry, and Ransom (1990) suggested the need for a comprehensive approach to familyassessment in health research. They reasoned that no one aspect of the family is inherently more important than any other,and that the family is too complex to rely on only one or two indices that purport to "represent the family." They alsosuggested that the risk of false negative results is increased when only a narrow range of family constructs are included inan assessment battery, because many important areas of family life are not evaluated.

After an extensive review of the literature on family assessment within the context of health, Fisher et al. (1992c)proposed a comprehensive assessment framework. They identified four major family "domains" or areas of family life thatshowed consistent relationships with health in multiple studies and settings: family World View (family beliefs, values,sentiments), family Emotion Management (affiliative tone, style of expression), family Structure/ Organization (orderliness,patterns of roles and rules, closeness), and family Problem Solving (activity, style, effectiveness). Using a community-basedsample, they assessed each domain with several variables to map the internal conceptual space of each, and to describe itsstructure and content (Fisher et al., 1992c; Fisher, Ransom, & Terry, 1993). Many of the family variables were then shownto be significant associates of the self-reported health and well-being of adult family members.

Their work provided the foundation for our assessment strategy: we adopted the multidomain assessment framework andassessed each family domain with several measures. We undertook two major changes to the original assessment protocol,however. First, although we were able to use many of their original questionnaire measures, their use of family interactiontasks to assess Emotion Management and Problem Solving in their community-based study was not practical for our sampleof Alzheimer's families. We were unable to gather together the several members of each multigenerational family toadminister the interaction procedures. Instead, we used a semi-structured telephone interview to assess these familydomains.2 Second, our attempts to assess family Problem-Solving Style, Effectiveness, and Activity, the primaryproblem-solving dimensions identified by Ransom, Locke, Terry and Fisher (1992b), were unsuccessful. We were unableto develop telephone interview indices that adequately assessed the major problem-solving scores that were developedoriginally from ratings of family interaction. Consequently, three of the four family domains proposed by Fisher, Ransom,and Terry were assessed in this research: family World View, family Structure/Organization and family EmotionManagement.

We included three of the most promising and relevant Fisher, Ransom, and Terry variables from the family World Viewdomain, five from the family Structure/ Organization domain, and four from the family Emotion Management domain (seeTable 3). A description of each of the family variables, their method of assessment, and an estimate of internal consistency(questionnaire scales) or interrater reliability (telephone interview ratings) are presented in Table 3. To investigate thepsychometric properties of the original questionnaire scales with our sample, the items in each scale were submitted to (1)a principal components analysis (PCA) separately by gender to determine if a single, defining dimension emerged, and (2)an analysis of internal consistency. A large, dominant factor emerged in both the rotated and unrotated matrices for eachscale in each family domain, and alpha coefficients (shown in Table 3) indicated good internal consistency.

The telephone interview ratings were developed specifically for this research. Interviewers asked each family member auniform series of probe questions about current family stresses and ways the family made decisions, handled conflict, andexpressed feelings. Specific examples of each were elicited. For example, each family member was asked to describe aspecific instance in which a disagreement occurred among family members regarding a caregiving issue. If not included inthe family member's response, the interviewer asked who was involved in the disagreement, how was the disagreementexpressed (verbal discussion, arguing, avoidance, coercion by guilt induction), how was it resolved (use of extrafamial"experts" or advisors, authoritarian actions by a family leader, shared resolution, left unresolved), and how did familymembers feel both during the disagreement and after. The interviewer made notes as the discussion progressed, and eachinterview was audiotaped. Following the interview, both the notes and the audiotape were reviewed, and a set of 47well-defined, 3-, 4-, or 5-point ratings reflecting how the respondent "appraised" their family was completed. We reporthere on only a subset of these ratings (see Table 3).3 The ratings were made by pooling information from several portionsof the interview into each rating, as is often done in a clinical interview. That is, there was no one-to-one correspondencebetween a specific probe question, a respondent statement, and a given rating. Instead, we asked the interviewer to stepback from the interview and develop a comprehensive picture of the family as seen through the eyes of the respondent,using the probe questions for structure. It was expected that different views of the family would be reported by differentfamily members.

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Raters were senior graduate students in psychology with several years of clinical experience and knowledge of familytheory. Following training, interrater reliability was established by four raters who rated 15 randomly selected audiotapes.Kappa coefficients were computed for each rating for all pair-wise combinations of the four raters. The mean of the sixkappas and the range of coefficients among all pairs of raters are presented in Table 3. Once reliability was established, theraters met weekly to discuss scoring problems and to compile a manual so that similar scoring problems could beresponded to consistently. To prevent rater drift over time, three audiotapes were scored by all four raters each month.

Table 3Description of Family Variables

Family Domain & Variables Description Reliability

WORLD VIEW

Coherence A 25-item questionnaire scale assessing an optimistic view that theworld is not controlled by chance events or powerful others(Ransom et al., 1992a).

alpha = .877

Offspring-Parent Separation A 4-item questionnaire scale assessing beliefs about separationbetween the parental and adult-offspring generation (Ransom etal., 1992a).

alpha = .688

Life Engagement A 13-item questionnaire scale assessing beliefs about moderate risktaking, a preference for variety and new experiences, and atolerance for differences (Ransom et al., 1992a).

alpha = .791

STRUCTURE/ORGANIZATION

Intergenerational Fusion* An 8-item questionnaire scale assessing the degree to which therespondent operates in a fused or individuated manner with parents(Bray et al., 1984).

alpha = .770

Rituals A 3-point interview rating of the number and frequency of familyrituals, e.g., Sunday dinners, birthday celebrations (1-2 per year,2-12 per year, more than 1 per month)

kappa = .780(.588/.862)

Organized/Cohesiveness A 26-item questionnaire scale assessing family cohesion andsharing, rule clarity, and clarity of leadership (Fisher, Ransom,Terry, & Burge, 1992b).

alpha = .899

Outsider A 3-point composite of two interview rating scales reflecting thepresence or absence of a family member who is isolated from therest (Isolate), or a family member who is considered by the rest as"being different" in beliefs or behaviors (Deviate); 0 = neither, I =one or the other, 2 = both.

kappa = .746(.600/.821)

Shared Leadership An interview rating of style of decision making. High scores reflecta shared, democratic style; low scores reflect authoritarian decisionmaking made for the family by one or two family members (1 =authoritarian, 2 = one person decides with consultation, 3 = shareddecision making).

kappa = .717(.641/.777)

EMOTION MANAGEMENT

Distance A 3-point interview rating of uninvolvement, low emotionalengagement, and detachment among family members (Fisher etal., 1992a).

kappa = .748(.655/.831)

Hostility A 3-point interview rating of the degree of hostile emotional tone,criticalness, and judgmental behavior among family members(Fisher, Nakell, Terry, & Ransom, 1992a).

kappa = .685(.700/.626)

Conflict Avoidance A 3-point interview rating of the degree to which the expression ofconflict is avoided or ignored in the family (Fisher et al., 1992a).

kappa = .772(.690/.881)

Guilt Induction A 3-point interview rating of the degree to which guilt is used inthe family to control, punish, or influence others (Fisher et al.,1992a).

kappa = .735(.680/.801)

NOTE: Alpha was used to assess the inter-item consistency of questionnaire scales, and kappa was used to assess the interrateragreement of telephone interview rating scales (four raters with 15 cases; mean kappa and range of kappa for pair-wise raters).

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* Intergenerational Fusion was administered only to offspring and inlaws; it was omitted from the spouse assessment protocol.

Other MeasuresSeverity of Disease (SEVERITY): We reasoned that the severity of the patient's disease provided an index of the level of

demand for care placed on the family. Patients who manifested many cognitive and behavioral symptoms were likely toplace a greater burden on the family than other patients. Six scales assessed by Clinic staff and one scale assessed by therespondent were used to assess this construct: (1) level of cognitive disturbance (Mini-Mental State Exam); (2) level ofdementia (Blessed-Roth Dementia Rating Scale); (3) number and intensity of psychiatric symptoms (Clinic psychiatrist'srating of nine symptoms); (4) number of neurological signs and symptoms (Clinic neurologist's rating of nine symptoms);(5) other health problems (Clinic physician's rating of the number of major illnesses); (6) number and intensity of "problembehaviors" (clinical nurse's rating after home visit); and (7) number of years of "dementia symptoms" (based on interviewwith the spouse). These seven indicators were submitted to a PCA with oblique rotation. Two well-constructed componentsemerged that accounted for 55% of score variance. Factor I reflected Behavioral Problems, with high loadings frompsychiatric symptoms (.81), patient problems (.77), and Blessed-Roth Dementia Rating Scale scores (.60). Factor 2reflected Cognitive Problems, with high loadings from the Mini-Mental State Examination (.78) and neurologicalsymptoms (.66). As expected, the two components were moderately correlated (r = .24). Both were used in the analysesdescribed below.

Caregiver Strain (CARESTRAIN): This measure, an 11-item scale, developed by Niedereche and Fruge (1984), indexedthe level of subjective distress experienced by the respondent regarding the care of the patient (alpha = .85). It was used asa control variable in the multiple regression equations, described below, to remove the influence of subjective stress (aconstruct similar to some aspects of anxiety and depression) on the relationship between SEVERITY, FAMILY, andrespondent health and well-being.

Health and Well-Being (HEALTH/WB): Three self-report health and well-being scales were used, each tapping adifferent aspect of this construct: Anxiety and Depression were assessed as a single construct, using Pearlin, Lieberman,Menaghan, and Mulla'ns (1981) modification of a scale developed originally by Derogatis (1974). It contains 22 items(alpha = .85). Number of Somatic Symptoms was assessed by a 13-item scale of common somatic symptoms developed byWare, Brook, Davies-Avery, et al. (1984) (alpha = .63). Well-Being was assessed by a 9-item scale developed byBradburn (1969) (alpha = .94).

Data AnalysesA hierarchical multiple regression equation was run among the variables listed above for each of the three dependent

HEALTH/WB variables (Cohen & Cohen, 1983). The order of entry among variables for each equation was the same: StepI = SEVERITY (patient Behavioral Problems and Cognitive Problems); Step II = respondent GENDER; Step III =respondent CARESTRAIN; Step IV = FAMILY (three to five variables depending on family domain); and Step V =FAMILY by SEVERITY interaction (three to five terms depending on family domain).4 The equations were repeated usingthe variables from each family domain separately. The series of equations was run separately for spouses, offspring, andinlaws, yielding a total of 27 equations (3 respondents by 3 family domains by 3 HEALTH/WB scores).

Because the three HEALTH/WB scales were intercorrelated (from .11 to .34), as expected, we first ran a set ofmultivariate multiple regression equations (MVMR), using the three HEALTH/WB scores as a single group of dependentvariables. This procedure is similar to MANOVA, in which the results for each of several intercorrelated dependentvariables are reviewed individually only if the dependent scores are significant as a group. This is a conservative procedurethat protects against Type I error by insuring that significant findings for more than one dependent variable do not occurbecause of the shared variance among the three intercorrelated scores. In the next section we first report the results of theMVMR analyses. This is followed by a review of results for each step in the univariate multiple regression equations, butonly in those instances in which that step was significant in the MVMR for that group of family respondents (spouses,offspring, and inlaws).

RESULTS

Multivariate Multiple Regression AnalysesThe MVMR analyses (see Table 4) indicated that SEVERITY (Step I) was not a significant associate of the group of

three HEALTH/WB scores, but that GENDER (Step II) and CARESTRAIN (Step III) were significant and independentassociates of the group of HEALTH/WB scores for spouses, offspring, and inlaws. The FAMILY variables (Step IV) weresignificant associates of the HEALTH/WB scores only for offspring, and the SEVERITY by FAMILY interaction terms(Step V) were significant associates of the three HEALTH/WB scores for spouses and in-laws, but not for offspring. A

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review of the interaction findings for spouses, however, indicated that although the group of three HEALTH/WB scoresreached statistical significance, none of the three individual HEALTH/WB scores reached significance. The importance ofthe significant interaction term for spouses was, therefore, diminished.

Table 4F Values for Each Step of Multivariate Multiple Regression Analyses with Three Dependent Health Variables

Step Spouses Offspring Inlaws

1. SEVERITY 1.574 1.411 1.384

2. GENDER 6.741*** 2.554* 5.873***

3. CAREGIVER STRAIN 16.302*** 3.296** 2.654*

4. FAMILY

World View .860 3.582*** .940

Structure/Organization 1.225 2.617*** 1.088

Emotion Management .873 1.117 .631

5. FAMILY BY SEVERITY INTERACTION

World View 1.307 1.746 3.613***

Structure/Organization 1.391 1.615 3.040***

Emotion Management 3.114*** 1.216 3.898***

NOTE: MVMRs were run separately by respondent (spouses, offspring, inlaws) and by family domain (World View,Structure/Organization, Emotion Management). The three health variables were Well-Being, Somatic Symptoms, andAnxiety/Depression.

* p < .05;** p < .01;*** p < .001

Multiple Regression AnalysesWe now review the results of the univariate multiple regression equations in those instances in which the MVMR

analyses indicated that the step in the equation was significant above and beyond the effects of previous steps.Spouses: Gender was a significant associate of Anxiety/Depression for spouses (see Table 5). Females reported higher

Anxiety/Depression than males. Gender was not a significant associate of Well-Being or Somatic Symptoms.CARE-STRAIN was a significant associate of all three HEALTH/WB scores. In all cases, spouse CARESTRAIN wasnegatively associated with spouse HEALTH/WB. None of the FAMILY variables or FAMILY by SEVERITY interactionvariables reached significance in the MVMR analyses for spouses.

Table 5Multiple Regression Analysess

Well-Being Somatic Symp Anx/Depr

Step ∆R2 Beta ∆R2 Beta ∆R2 Beta

1. SEVERITY = NS

2. GENDER .000 .028 .000 .030 .088*** .279***

3. CAREGIVER STRAIN .178*** -.403*** .049* .227* .273**** .532****

4. FAMILY

World View = NS

Structure/Organization = NS

Emotion Management = NS

5. FAMILY BY SEVERITYINTERACTION = NS

NOTE: NS indicates that this step was not significant in the MVMR analyses.R2 total up to and including Step 3: Well-Being = .226****; Somatic Symptoms = .119*; Anx/Depr = .430****.

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* p < .05;** p < .01;*** p < .001;**** p < .0001

Offspring: Similar to the spouse data, offspring GENDER was a significant associate of offspring HEALTH/WB onlyfor Anxiety/Depression (see Table 6). Female offspring reported higher Anxiety/Depression than male offspring. Likewise,offspring CARESTRAIN was a significant associate of all three HEALTH/WB scores; offspring CARESTRAIN wasnegatively associated with offspring health.

Table 6Multiple Regression Analyses: Offspring

Well-Being Somatic SympAnx/Depr

Step ∆R2 Beta ∆R2 Beta ∆R2 Beta

1. SEVERITY = NS

2. GENDER .005 -.077 .002 .052 .034** .186**

3. CAREGIVER STRAIN .037** -.195** .022* .151* .038** .195**

4. FAMILY

World View .075*** .095*** .075***

Offspring/Parent Sep. .125 -.238*** -.155*

Coherence .153* -.203** -.156*

Life Engagement .149* .016 -.120

Structure/Organ. .083*** .030 .137***

Intergen. Fusion -.256*** .401***

Rituals .005 -.157*

Organized Cohesive .059 .139

Outsider .124 -.064

Shared Leadership .004 .049

Emotion Manage. = NS

5. FAMILY BY SEVERITY

INTERACTION = NS

NOTE: NS indicates that this step was not significant in MVMR analyses.R2 total for Well-Being, Somatic Symptoms, and Anx/Depr, respectively: World View = .154****, .177****, .193****;

Structure/Organization = .160***, .134*, .243****; Emotion Management = .080, .166***, .124*.* p <.05;** p <.01;*** p <.001;**** p <.0001

The MVMR analyses indicated that both the family World View and the family Structure/Organization variables weresignificant associates of offspring HEALTH/ WB above and beyond the effects of SEVERITY, GENDER, andCARESTRAIN. For family World View, Offspring-Parent Separation was negatively associated with offspring SomaticSymptoms and Anxiety/ Depression; family Coherence was positively associated with offspring Well-Being and negativelyassociated with offspring Somatic Symptoms and Anxiety/Depression; and family Life Engagement was positivelyassociated with offspring Well-Being. Each of the three family World View scales was significantly, positively, andindependently associated with offspring HEALTH/WB.

For family Structure/Organization, Intergenerational Fusion was significantly and negatively associated with offspringWell-Being, and positively associated with offspring Anxiety/Depression. Likewise, Rituals was negatively associated withoffspring Anxiety/Depression. Thus, Intergenerational Fusion was negatively associated and family Rituals was positivelyassociated with offspring HEALTH/WB. The FAMILY by SEVERITY interaction term did not reach significance in theMVMR analyses for offspring.

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Inlaws: For inlaws, GENDER was significantly associated with Anxiety/Depression but not with the other two healthvariables. Again, female inlaws reported higher Anxiety/Depression than male in-laws (see Table 7). Also, CARESTRAINwas significantly associated with all three inlaw HEALTH/WB scores. As expected, inlaw CARESTRAIN was negativelyassociated with inlaw health.

Table 7Multiple Regression Analyses: Inlaws

Well-Being Somatic Symp Anx/Depr

Step ∆R2 Beta ∆R2 Beta ∆R2 Beta

1. SEVERITY = NS

2. GENDER .000 .019 .014 .121 .089*** .303***

3. CAREGIVER STRAIN .040* -.208* .044* .218* .067*** .267***

4. FAMILY = NS

5. FAMILY BY SEVERITYINTER.

World View .096** .131*** .195***

Offspr./Parent Sep. .093 -.234* -.232*

Life Engagement -.341*** .229* .413***

Coherence .113 -.273** -.238**

Structure/Organization .069 .172*** .215***

Organized Cohesive .318*** .405***

Shared Leadership -.188* -.186

Rituals -.315*** -.355**

Intergen. Fusion .320** .265*

Outsider -.034 -.132

Emotion Management .043 .277*** .184***

Guilt .584*** .465***

Distance .001 .035

Hostility -.098 -.131

Avoidance -.140 -.132

NOTE: NS indicates that this step was not significant in MVMR analyses.R2 total for Well-Being, Somatic Symptoms, and Anx/Depr, respectively: World View = .209*, .278***, .397****;

Structure/Organization = .128, .364***, .445****; Emotion Management = .123, .432****, .380****.* p <.05;** p <.01;*** p <.001;**** p <.0001

Although the FAMILY variables were not significant associates of inlaw HEALTH/WB in the MVMR analyses, theFAMILY by SEVERITY interaction terms (Step V) reached significance for all three family domains (see Table 4).Significant and independent interaction terms with SEVERITY were found for each of the three family World Viewvariables (Offspring-Parent Separation, Life Engagement, Coherence) for inlaw Somatic Symptoms andAnxiety/Depression (see Table 7). Also, a significant interaction between Life Engagement and SEVERITY was found forinlaw Well-Being. Likewise, significant and independent interaction terms occurred for four of the five family Structure/Organization by SEVERITY variables for both inlaw Somatic Symptoms and Anxiety/Depression (see Table 7):Organized Cohesiveness, Shared Leadership, Rituals, and Intergenerational Fusion. The Outsider by SEVERITYinteraction term did not reach significance for any health variable. Last, Guilt was the only Emotion Management variablethat interacted with SEVERITY. It was significantly associated with inlaw Somatic Symptoms and Anxiety/ Depression.

The pattern of the interactions between FAMILY and SEVERITY for inlaws was similar for all but two terms. Somepersonal appraisals of the family served to protect the inlaw's personal health against the stresses caused by the demands of

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care. Plots of the interaction terms suggested that this effect was most pronounced under conditions of high SEVERITY.There was little or no protective effect of the FAMILY variables under conditions of low SEVERITY. Thus, the FAMILYvariables within each domain independently protected the inlaw from the negative effects of high demands for patient careon their personal health and well-being.

Plots of the FAMILY by SEVERITY interaction terms that included Life Engagement and Organized Cohesiveness,however, indicated that these two self-reported family variables served an opposite function: under conditions of highSEVERITY there was a negative correlation between each of these two variables and HEALTH/WB, whereas underconditions of low SEVERITY no significant association occurred. That is, when SEVERITY was high, inlaws who viewedtheir husband's or wife's family of origin as high on Life Engagement and/or Organized Cohesiveness reported poorHEALTH/WB. Thus, the FAMILY variables served both to moderate and to exacerbate the effects of patient care on inlawhealth and well-being. It is also important to note that seven of the eight interaction terms among all three family domainswere significantly associated with both inlaw Somatic Symptoms and Anxiety/Depression. Inlaw Well-Being wasassociated only with the interaction term that included family Life Engagement.

DISCUSSIONThree findings stand out in these results. First, we find no significant associations between the severity of the elder's

disease and the group of three family member health and well-being scores. Second, we find significant and independentassociations between both respondent gender and health and between respondent-reported caregiver strain and health forspouses, offspring, and inlaws. As expected, female offspring and inlaws report higher anxiety/depression than males. Thismay be a normative finding that is consistent with the data from many community-based health studies (Fisher et al., 1993).Further, as expected, caregiver strain is negatively associated with health and well-being for all three groups of familyrespondents. Third, above and beyond the effects of the severity of patient disorder, the gender of the respondent, and therespondent's caregiver strain, we find that self-reported qualities of the patient's family display relationships with familymember health and well-being in three particularly interesting ways: (1) the family World View and Structure/Organizationvariables are directly associated with health and well-being for offspring; (2) the family variables are interactivelyassociated with health and well-being (with severity of patient disorder) for inlaws; and (3) the family variables are notdirectly or interactively associated with spouse health and well-being. Perceived qualities of family life operate differentlyfor different family members: directly for offspring, interactively with severity of patient disorder for inlaws, and not at allfor spouses. How might we understand these findings? One approach is to interpret the data on the basis of family history,assumed family roles, and the different demands linked with each of the three family positions.

Absence of Family Effects for SpousesThe absence of both direct and interactive associations between the family variables and spouse health and well-being is

unexpected, and our interpretations are speculative. We suspect that the findings for spouses may be related to the highmean levels and poor dispersion of spouse family appraisals, compared to the appraisals of offspring and inlaws. Of the 12family variables included in this research, a series of one-way ANOVAs comparing spouses, offspring, and inlaws,indicates significant differences among these three groups of family respondents on 10 variables; spouses score the highest(positive direction) on all 10 variables. This suggests that elderly spouses describe the family in a positive light, perhapsbecause they feel responsible for the family or perhaps because they are less inclined to share negative views and appraisalsabout the family with outsiders. Also, the standard deviation of spouse family appraisals on 11 of the 12 family variables isthe lowest of all three groups of family members. The consistently positive spouse family appraisals, often in strikingcontrast to offspring and inlaws, and the restricted range of spouse family scores may reflect a somewhat unrealistic,positive family appraisal (ceiling effect), and reduce the potential for statistically significant associations between spousefamily variables and spouse health and well-being to emerge. From this perspective, spouses may provide the least "useful"information about family life, when compared to offspring and inlaws.

Direct Effects of Family Characteristics on OffspringIt goes without saying that the offspring's family of origin and the ongoing relationships offspring have with parents and

siblings have a profound effect on their response to a parent's debilitating chronic illness. Qualities of family life, such asbeliefs, structures, and norms, are directly associated with offspring personal health and well-being over and above theeffects of the other potential influences we considered, including the stress associated with caregiving. The absence of asignificant Family by Severity interaction suggests that it is the family qua family that seems most important for offspring,not the family tempered by the demands for patient care, as is the case for inlaws.

Interactive Effects of Family Characteristics on Inlaws

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The history and impact of the patient's family is considerably different for inlaws than it is for offspring. In most cases,inlaws' historical, emotional, and behavioral involvement with the family begins initially through their spouse, the patient'soffspring. In contrast to offspring, however, inlaws by and large experience a different emotional investment in the family,with different expectations for behavior, different roles, and different historical roots and pressures. Given their uniquehistory and position, characteristics of the family are not directly associated with inlaw health and well-being, but operateonly in conjunction with the number and kind of demands for patient care made upon them. By this interpretation, we arenot suggesting that inlaws are emotionally or otherwise uninvolved in their spouse's family of origin, only that the quality ofinvolvement is considerably different from that of offspring. Hence, the different patterns of family effect. It is also useful topoint out that since the effects of gender were removed at an earlier step in the analysis, and since we find no significantGENDER by FAMILY interactions in preliminary analyses, the findings for inlaws are applicable to both males andfemales.

The pattern of scores in the interaction terms for inlaws suggests that in all but two cases, each variable within eachfamily domain serves a distinct, independent, protective function to shield the inlaw against the negative effects caused bythe demands for patient care, especially at high levels of patient problems. Two family variables, one each in the WorldView and Structure/ Organization domains, however, exacerbate the effect of demands for care on health and well-being:family Life Engagement and family Organized Cohesiveness, respectively. Thus, for inlaws, some characteristics of thepatient's family increase the effects of demands for patient care, whereas other characteristics of the family protect inlawsfrom these demands. Ransom, Fisher, and Terry (1992a) suggest that we cannot assume that qualities of the family thatappear on the face of it to reflect "positive" family resources will be associated with positive outcomes in all cases. Theyurge us to consider that "there may be an incompatibility between the beliefs and attributional styles of the family and thedemand characteristics of the illness" (p. 265). They speculate that families scoring highly on Life Engagement might havea particularly difficult time responding to the ongoing, repetitive care required by a member with a chronic disease, giventhe family's preference for new experiences and an engaged extrafamilial lifestyle. Our data support their speculationsregarding inlaws in families experiencing high levels of patient problems.

Our understanding of the significant Organized Cohesiveness by Severity interaction for inlaws also follows this line ofreasoning. It indicates that this family quality exacerbates the negative effects of demands for care on health and well-being,especially at high-demand levels. We suspect that close and well-organized families may place unexpected or unwanteddemands and responsibilities on inlaws, assuming that as family members they should adhere to the family's norms forparticipation.

Other findings from our study underscore the inlaw's unique position in the family. Coupled with the present findings, wespeculate that there are at least two paths by which the demands for care and the structure and operation of the patient'sfamily affect inlaw health and well-being. First, the present data suggest a direct path: the demands for patient care interactwith the inlaw's appraisal of the patient's family in their association with inlaw health and well-being. Second, Liebermanand Fisher (in press) found that severity of patient disorder and offspring appraisals of the family are both directly andinteractively associated with inlaw marital strain, an indirect path that leads from patient demands for care, to offspringperceptions of the family, to inlaw health and well-being. Thus, the stress of caring for an elderly member with Alzheimer'sdisease in the family may affect inlaws directly, because of the demands for patient care, their personal caregiver strain, andtheir personal appraisals of the family; or indirectly, because of the demands for care, their spouse's caregiver strain, andtheir spouse's appraisals of the family. For example, an offspring may be forced to limit the time and energy devoted to hisor her marriage or to other second-generation family duties because of the demands for parental care. The offspring'shusband or wife may react by feeling neglected, or the inlaw may have to assume added household, childrearing, orfinancial responsibilities because of an overburdened spouse (offspring). As in any system, changes in role behaviors in onepart are matched by reciprocal changes throughout, creating both direct and complex paths of influence. Although thefindings from these studies suggest the direct and indirect paths of influence for inlaws, similar scenarios can be constructedregarding spouses and offspring.

Severity of Disorder and Family Member Health and Well-BeingThe absence of significant, direct associations between severity of patient disorder and spouse, offspring, and inlaw

health and well-being is expected, when using a conservative test with a group of three intercorrelated health andwell-being variables.5 Considerable data suggest that "objective burden," defined as the patient's functional impairment, isoften unrelated or only minimally related to perceived caregiver subjective burden and other caregiver health andwell-being variables (Boss et al., 1990; Zarit et al., 1980). Our data suggest that this finding holds not only for the primarycaregiver, but also for other family members. There are several factors that may play a role in the series of links betweenthe objective pressure on the family system caused by the presence of a chronic disease and the resulting cost to the systemin terms of the health and well-being of family members. The quality of family members' previous relationship with thepatient, the family's attribution of the disease (Cohen & Eisdorfer, 1988), and the pattern of ongoing family relationships

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(Fisher et al., 1993) are but a few of the factors that mediate the demands for patient care into the subjective impact of thedisease on family members. These data provide additional support for our contention that the effects of demands for patientcare placed on the family need to be viewed not only as a series of caregiving requirements, but also as a complexinterweaving of subjective family member interpretations and perceptions couched within the multigenerational familycontext.

Limitations of the DataWe advise two cautions when reviewing these data. First, an unstudied variable that may qualify the relationships among

severity, gender, carestrain, family, and health and well-being is the number of hours per week devoted to direct patientcare and the kind of care provided. Although almost all offspring and inlaws in this sample provided at least some ADL/IADL care, the ratio of number of variables to sample size precluded the inclusion of number of carehours and kind of carein the multiple regression equations. The amount and kind of care provided regularly by each family member should beincluded in future studies of chronic disease and the family.

A second caution is that these data were collected at one point in time. Consequently, statements regarding causationmust necessarily be speculative. A 2-year follow-up study of this sample of families is now underway and should providemore data on potential causative links among the variables over time.

CONCLUSIONSThese findings suggest that we need to broaden the scope of research and intervention with families of Alzheimer's

disease patients, as well as other chronic diseases, to include all or most members of the family system. In the case ofAlzheimer's disease, this means considering spouses, offspring, and inlaws, even if some family members reside in distantcities (Worby, Altrocchi, Veach, & Crosby, 1991). If the health-related costs of the disease are to be considered, and if theprocesses of care are to be recognized more fully, then the broad context of caregiving needs to be a focus of systematicstudy. Several recent reviews of the literature on interventions directed at caregivers of patients with Alzheimer's Disease,with depression, or with other chronic and debilitating disorders of the elderly, have concluded that, despite intensiveefforts, outcomes are only marginally improved (Zarit, 1990). One reason may be that the scope and focus of mostintervention programs are too narrow, addressing only the primary caregiver. Program developers have not incorporatedfamily context as an underlying framework for intervention.

We therefore argue for considering the broad scope of family life as the primary context of study. Depicting the family onthe basis of only one or two family variables that purport to "represent" the complexities of the multigenerational familysystem is too limiting and does not take into consideration our findings that: (1) several family variables within a familydomain are independently associated with family member health and well-being, and (2) different patterns of associationbetween the family variables and member health and well-being occur for different family members. Incorporating thesefindings into more comprehensive programs of intervention may prove useful.

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Manuscript received March 18, 1993; Revisions submitted November 5, 1993; Accepted February 24, 1994.

1In all cases, patient and spouse were residing independently in the community, that is, not residing in the home of an offspringor other family member. In four cases, however, the youngest offspring was residing in the parent's home.

2We recognize, however, that observer ratings of family interaction and personal appraisals by individual family members reflecttwo very different kinds of "family" data (Fisher, Kokes, Ransom, et al., 1985; Ransom, Fisher, Phillips, et al., 1990).

3The interview protocol and rating scale are available from the first author.

4Only Behavioral Problems, one of the two SEVERITY variables, was used in the interaction terms. Cognitive Problems, thesecond SEVERITY variable, was not included because (1) preliminary analyses indicated that it was not directly or indirectlyassociated with HEALTH/WB, and (2) we wished to conserve degrees of freedom and keep the number of variables in the equationto a minimum.

5In other articles from this study, we reported statistically significant associations between severity of patient disorder and specifichealth and well-being variables (Lieberman & Fisher, in press). To avoid confusion, we wish to point out that modest univariateassociations between patient severity and individual health and well-being variables also were found in the analyses reported above.We have not emphasized these findings here because our data analytic strategy was limited by (1) the ratio of number of variables tosample size, and (2) the number of equations we wished to run. Therefore, we adopted a conservative test by using MVMR. Thistest informed us that the separate findings for the three HEALTH/WB variables were not independent. That is, the shared variancebased on their intercorrelation led to the significant findings. We therefore conclude that the association between SEVERITY andfamily member HEALTH/WB is low and generally nonsignificant.

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