Family functioning in the caregivers of patients with dementia

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY

Int J Geriatr Psychiatry 2004; 19: 533–537.

Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/gps.1119

Family functioning in the caregivers of patients with dementia

Alison M. Heru1*, Christine E. Ryan2 and Asma Iqbal1

1Butler Hospital, Brown University School of Medicine, Providence, Rhode Island2Rhode Island Hospital, Providence, Rhode Island

SUMMARY

Background Caregiver burden has been extensively studied in the dementia population. The marital relationship has beensuggested as a mediational model through which variables influence the caregiver and contribute to the experience of burdenor reward.Objectives This study examines family functioning, caregiver burden and reward and quality of life in 38 family memberscaring for a relative with dementia.Methods Caregivers of out-patients with dementia completed self report questionnaires.Results 63% of caregivers were female with a mean age of 62 years. Patient mean age was 73 years. The average numberof caregiving years was 3.1. Caregivers were more likely to be spouses (61%) than children (29%) or other relatives (11%).Despite the fact that caregivers reported that their relatives were moderately disabled, they perceived more reward thanburden. Caregivers who reported poor family functioning had higher ratings of strain and burden. Family functioning inthese caregivers was poorest in the dimensions of affective responsiveness, problem solving and communication but itwas also impaired in roles and affective involvement.Conclusions Assessing a family’s functioning may be an important factor in the care of the dementia patient and his/herfamily. Copyright # 2004 John Wiley & Sons, Ltd.

key words— Family assessment; Family assessment device; dementia; burden and reward

INTRODUCTION

This study examined the relationship between familyfunctioning and caregiver burden and reward, in orderto determine the best intervention strategies for care-givers of dementia patients. Caregiver burden hasbeen extensively studied in the dementia populationwith consistent findings of high burden with relativelyfew associations unique to caregiving (Schulz andO’Brien, 1994). Correlates of psychiatric morbidityin caregivers have been found to be general risk fac-tors for negative health outcome, such as lack offinancial resources, poor health of the caregiver, lackof social support and low self-esteem and mastery(Schultz et al., 1995). Shultz suggested that more

complex interactive and mediational models be con-structed and used in assessing the impact of caregiverdemands. The marital relationship has been suggestedas one such mediational model (Kriegsman et al.,1994) and the role of family qualities as either protec-tive or aggravating (Fisher and Lieberman, 1994).Early studies of family factors found that lowpre-morbid intimacy (Horowitz and Shindleman,1983) and unresolved longstanding interpersonal pro-blems (Teusink and Mahler, 1984) contribute to care-giver burden. After diagnosis, decreased intimacy(Morris et al., 1988) and increased criticalness andhostility towards the patient (Gilhooley and Whittick,1989) contributed to caregiver burden. In a minorityof caregivers (24%) an increase in intimacy occurredas the disease progressed (Fearon et al., 1998).

A well-researched psychiatric measure of negativeemotion in a family is ‘expressed emotion’ (EE),which measures the level of emotional involvement,level of criticism and overt hostility between a familymember and the identified patient. Caregivers with

Received 4 November 2002Copyright # 2004 John Wiley & Sons, Ltd. Accepted 11 February 2004

*Correspondence to: Dr A. M. Heru, Butler Hospital, BrownUniversity School of Medicine, 345 Blackstone Boulevard,Providence, Rhode Island 02906, USA. Tel: (401) 455-6314. Fax:(401) 455-6309. E-mail: [email protected]

higher EE scores tend to believe that the patient’sbehavior is under volitional control, whereas lowEE in the caregivers is associated with the belief thatthe patient’s behavior is less volitional (Tarrier et al.,2002). High EE caregivers have less effective copingstrategies than low EE caregivers (Bledin et al.,1990), lower levels of morale and poorer quality ofpast relationships (Gilhooley and Whittick, 1989).Low EE caregivers report enjoyment of the patient’scompany (Tarrier et al., 2002) Expressed emotion,however, does not capture other aspects of familyfunctioning, such as role changes and how the familysolves problems.

The practicality of caregiving may be experienceddifferently by each gender, with men perceivingwomen as being superior caregivers (Kay andApplegate, 1990) and men being more likely to definespecific boundaries around what they will do and willnot do (Twigg and Atkin, 1994). Female caregiversexpress more psychiatric morbidity directly attributa-ble to caregiving, compared to male caregivers (Yeeand Schultz, 2000). Male caregivers have been foundto have lower EE scores (they report less hostility and/or less criticalness of their ill relative) than femalecaregivers (Gilhooley and Whittick, 1989). Menmay also be reluctant to acknowledge distress, under-report symptoms or be unaware of their distress(Stommel et al., 1993; Lutzky and Knight, 1994). Insome reports, older female spouses report experiencinggreater burden (Kriegsman et al., 1994) while youngerfemale spouses report more complaints (Barusch andSpaid, 1989), loneliness and resentment of their rolesas caregivers (Fitting et al., 1986). In a comparisonof female caregivers for Alzheimer’s disease andParkinson’s disease, female spousal caregivers had asubstantially harder time with spouses suffering fromAlzheimer’s disease (Hooker et al., 2000).

In a family system, the gender of the caregiver maydetermine the level of affective involvement, affectiveresponsiveness and adaptation to their role. It may notgender per se, but rather how gender influencesfamily functioning such as the determination as towho is the primary nurturer in the family. In the tradi-tional family, nurturing has been identified as thefemale spouse’s role.

A stress process model has been used to describethe moderating and/or mediating influence of familyfunctioning on caregivers (Lawrence et al., 1998).‘Relationship quality’ is suggested as the mediatinglink between patient problem behaviors and levelsof role captivity and depressive symptoms in the care-giver. Relationship quality is measured by four itemsthat ask about closeness, communication, similar out-

look on life and how well the patient and caregiver‘get along’. Another well-developed model, theMcMaster Model of Family Functioning (Epsteinet al., 1983) is a multi-dimensional family systemsapproach which assesses problem-solving, communi-cation, affective involvement, affective responsive-ness, roles and behavior control, and gives a fullerpicture of caregiver family functioning. In theMcMaster approach, intimacy is measured in thedimension of affective involvement, expressed emo-tion in the dimension of affective responsive-ness, the division of household tasks and caregivingresponsibilities in the roles dimension (Miller et al.,2000). In addition to a developed theoretical andtreatment model, the McMaster approach also hasvalid and reliable assessments such as the FamilyAssessment Device (FAD) which allows seeminglydisparate findings to be pulled together into a coherentmeasure of family functioning.

This study was designed to look at the relationshipbetween family functioning and caregiver burden andreward.

METHODS

Subjects

Thirty-eight caregivers were approached while wait-ing for their relative who was undergoing clinicalassessment. After obtaining informed consent, thecaregiver filled out the initial questionnaires on siteor completed them at home and mailed in.

Instruments

Basic socio-demographic information was collected,as well as information on social support, other care-giving roles, strength of religious affiliation and anycurrent treatment situation. Family functioning wasassessed using the FAD (Epstein et al., 1983) andthree visual analogue scales. The MOS-36 short sur-vey health questionnaire measured the physical health(Ware, 1993) of the caregiver. The family member’sperception of the patient’s functional level was mea-sured with the Family Member’s Activities of DailyLiving Questionnaire (Lawton and Brody, 1969).The Caregiver Strain scale (CSI) (Robinson, 1983)and visual analogue scales measured the strains andburdens of caregiving. The Rankin burden score mea-sures caregiver perception of the severity of patientdisability on a six point scale. These instruments allhave adequate psychometric properties and have beenused extensively in studies of caregivers, depressionand family studies.

534 a. m. heru ET AL.

Copyright # 2004 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2004; 19: 533–537.

Statistical analysis

Characteristics of the total sample were describedusing univariate statistics. T-tests were used to com-pare quality of life measures between this sample ofcaregivers and published ratings of a ‘normal’ controlgroup. Bivariate analyses comparing gender, diag-noses and length of time caregiving included chi-square analyses for categorical factors and t-tests forcontinuous measures. Correlation analyses were used

to examine how family functioning was related togender, strain, burden and reward.

Results

Of the 38 caregivers of dementia patients who com-pleted assessments, 63% were female and 61% werespouses. Children comprised 29% of the sample andother relatives/friends comprised 11% of the care-givers. The mean age of the caregivers and patientswere 62 years (range 44–84) and 73 years (range59–88), respectively. Caregivers in this sample hadbeen caregivers for on average 3.1 years (SD 2.13)and perceived more reward (6.00 SD 3.62) thanburden (3.84 SD 2.55) overall (see Table 1). Activitiesof daily living (ADLs) as reported by the familymember were scored as 15.97 (range 1–28) and theRankin burden score was 3.45 (range 0–5), thusplacing the patient in the moderately disabled range.Perception of family functioning fell within thenormal range.

Compared to a community sample of a ‘normal’population (Jenkinson et al., 1993), caregivers ofdementia patients did not significantly differ on qual-ity of life items. These quality of life items includephysical functioning, social functioning, role limita-tions, mental health, energy and vitality.

Family functioning for the whole sample waswithin normal limits but when the sample was dividedby good and poor family functioning, based on estab-lished cut-off scores ( Miller et al., 1995), chi-squareanalysis suggested a significant relationship betweenpoor perceived family functioning and caregiverstrain and VAS Burden (Table 2).

There was no relationship between gender andgood/poor family functioning. For female caregivers,good family functioning was reported in 58% offemale caregivers and poor family functioning wasreported in 42% of female caregivers. Comparable

Table 1. Selected characteristics of caregivers of the dementiapatients (N¼ 38)

n %

Caregiver genderFemale 24 63Male 14 37

Caregiver roleSpouse 23 61Child 11 29Other 4 11

Mean SD Range

Caregiver age 61.8 40–84Patient age 73.4 40–88Length of caregiving (yrs) 3.1 2.13 1–12

Caregiver scoresStraina 5.05 3.04 0–13VAS-Burdena 3.84 2.55 1–10Rankin-Burdena 3.45 1.03 1–5VAS-Rewardb 6.00 3.62 0–10ADLb 15.97 8.03 0–28

Family functioningc

Problem solvinga 2.00 0.53Communicationa 2.12 0.46Rolesa 2.12 0.37Affective Responsivenessa 1.99 0.64Affective Involvementa 1.86 0.48Behavior Controla 1.71 0.36General Functioninga 1.88 0.62

ahigher score is worse; bhigher score is better; call scores are withinnormal range.

Table 2. Caregiver characteristics by good/poor family functioning*

Good (n¼ 23) Poor (n¼ 15)

Mean SD Mean SD t p

Caregiver age 64.0 (12.3) 58.4 (11.9) 1.39 0.17Patient age 75.0 (10.9) 70.9 (2.9) 1.12 0.27Straina 4.22 (3.2) 6.33 (2.4) �2.20 0.03Rankina 3.43 (1.1) 3.47 (1.0) �0.09 0.93VAS-Burdena 3.04 (2.5) 5.07 (2.2) �2.56 0.02VAS-Rewardb 6.35 (3.7) 5.47 (3.5) 0.73 0.47

ahigher score is worse; bhigher score is better.*based on established cut-off scores (see Miller et al., 1985).

family functioning in the caregivers of patients with dementia 535


figures for male caregivers were; 64% reporting goodfamily functioning and 36% reporting poor familyfunctioning (�2 (1)¼ 0.131, ns).

Poor family functioning was evident across mostdimensions, affective responsiveness, communicationand problem solving being the most severely impairedbut impairment was also present in roles and affectiveinvolvement (Table 3).

DISCUSSION

This study of 38 caregivers for patients enrolling in thememory disorders clinic examined the relationshipbetween family functioning and caregiver burdenand reward.

Firstly, despite the fact that they reported their rela-tives as moderately disabled, caregivers perceivedmore reward than burden. Some comments made bythe caregivers were; ‘Feeling needed and responsi-ble’, ‘Feeling good inside, doing for someone whatyou want for yourself and knowing I’ve done mybest’, ‘Being able to help’, ‘To brighten her days’,‘I know he is being cared for the way he is used to’and ‘I feel that she is loved and not alone.’ It is clearthat although caregiving is undervalued by society, itcan be personally rewarding. It is important to lookfor factors that will enhance satisfaction and reward.These can be identified at the initial family assess-ment and sources of satisfaction and reward can besustained as part of the family treatment. There hasbeen little prior research on the rewards of caregivingand this is an area worthy of future exploration.

Secondly, quality of life was similar to an age con-trolled normal community sample. If caregiving can

be carried out without significantly affecting qualityof life, caregiving can be perceived as more rewardingthan burdensome. It may be that attendance at a mem-ory disorder clinic has beneficial effects in terms ofquality of life for caregivers (Logiudice et al.,1999). There may be a general positive effect fromattending a well-staffed clinic with many personnelattending to the patients needs. It will be importantto differentiate this ‘placebo’ effect from the effectof specific interventions with caregivers and priorresearch has tended to focus on identification of thecaregiver burden rather than intervention studies.

Thirdly, when the sample was divided by per-ception of good and poor family functioning, acorrelation was seen between poor family functioningand increased strain and burden. It is difficult to knowthe causal direction. It could be that poor family func-tioning causes increased strain or that increased straincauses poor family functioning. The dimensions thatwere most disturbed were affective responsiveness,communication and problem solving. Affectiveresponsiveness refers to the range of affect expressedby family members and includes expressions of anger,criticism and sadness and the prevailing affective tonein the family (Epstein et al., 1983). Communicationhas not previously been studied in caregivers, thisstudy suggests that communication is significantlydisturbed in caregivers experiencing high burden.Problem-solving is an important function in thefamilies of dementia patients and may include deci-sions about how and where care is to be delivered.Poor problem-solving skills are associated with highstrain. Other dimensions that were dysfunctionalincluded roles and affective involvement. Roles mea-sures the effectiveness of the established family pat-terns for handling practical and emotional tasks andincludes the ability to deal with life changes thatoccur when a family member develops dementia.Affective involvement measures the emotionaldistance/closeness in a family system.

The FAD is a self-assessment tool that provides arating of many areas that can be affected by caregiv-ing for a relative with dementia. It is useful in bring-ing potential problems of the caregiver to the attentionof the family and the clinic staff, so that interventionmay be offered if needed. Prior research has not uti-lized a multi dimensional assessment tool that is asso-ciated with a well-researched treatment modeloffering the possibility of a treatment interventionclosely linked to research findings.

Limitations of the study include the small samplesize and possible selection bias from enrollmentsin a memory disorders clinic. The utilization of

Table 3. Good and Poor Family functioning of Caregivers ofPatients with Dementia (n¼ 38)

Good (n¼ 23) Poor (n¼ 15)

Mean SD Mean SD t p

Problem solving 1.68 0.36 2.44 0.40 �5.78 0.0001Communication 1.83 0.29 2.54 0.31 �6.94 0.0001Roles 1.95 0.33 2.38 0.25 �4.44 0.0001Affective 1.64 0.39 2.51 0.58 �5.04 0.0001responsivenessAffective 1.64 0.33 2.18 0.47 �3.85 0.001involvementBehavior control 1.61 0.40 1.85 0.24 �2.28 0.029General 1.46 0.28 2.49 0.43 �8.79 0.0001functioning

The higher the score, the worse the functioning.Scores in bold are unhealthy.

536 a. m. heru ET AL.


self-report questionnaires could also be considered alimitation, although they are cost effective and reflectcaregiver perceptions. The sample had little ethnicvariation and there is evidence that different ethnicgroups respond to the demands of caregiving differ-ently (Harwood et al., 1998). We also did not collectadequate data on socioeconomic status.

Future research should focus on the ways in whichreward and satisfaction can be enhanced and on theeffects of intervening with those caregivers whoreport poor family functioning.

In summary, caregivers of moderately disableddementia patients perceived more reward than burdenand no change in quality of life. Caregivers whoreported poor family functioning also reported highercaregiver strain. A multi-dimensional model of familyfunctioning provides a mechanism through whichmany variables can be seen to influence the caregiverand contribute to the experience of burden or reward.It may be useful for memory disorder clinics toinclude a screening process for family members ofthe dementia patient in order to maximize familyfunctioning and allow for intervention.

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Family functioning in the caregivers of patients with dementia