Mohammed T. Abou-Saleh

CAREGIVERS AND THEIR SUPPORT 759among caregivers are less consistent, but most studies do notdemonstrate a significant difference in the use of these medicationsbetween caregiving and non-caregiving samples 42,87,103 .In summary, the findings for physical health effects ofcaregiving are more equivocal than those for mental healthoutcomes. Although a number of investigators report significanthealth effects among subsets of caregivers, patterns of findingsacross studies are not as consistent. Evidence linking caregivingto physical health indicators, such as reported illness, physicalsymptoms, healthcare utilization or health-related behaviors, isgenerally weak 15 . This may be due to different definitions ofhealth, health outcome measures, caregiving and controlsamples (varying levels of vulnerability and resources), carerecipient samples (functional vs. behavioral impairments) andthe fact that some self-report measures of physical health mayprimarily reflect life satisfaction 104 .Evaluating links between caregiver distress and health outcomeswill ultimately require complex, multivariate models thatare tested prospectively, over an extended period of time. Despitemethodological challenges inherent in the evaluation of caregivingoutcomes, data from several laboratories lend weight to theargument that chronic stressors contribute to affective disordersand may alter caregivers’ sympathetic, neuroendocrine andimmunological function.FAMILY CAREGIVING: RELOCATING THE CARERECIPIENTPlacing a relative in a nursing home is a stressful event for boththe family caregiver and the patient. Caregiving places substantialburdens upon the caregiver and these burdens increase with theprogression of the disease. Yet demented persons are usuallyplaced in nursing homes only when all other avenues have beentried and other resources are exhausted 105–107 . Generally, thedecision is postponed long past the time when more objectivepersons see it as appropriate 108 . Or decisions may be crisis-driven,e.g. the care recipient wanders off, sets the stove on fire, oroverdoses on pills. One reason this delay occurs is that somecaregivers, especially spouses, believe that their role obliges themto sole caregiving responsibility and to never institutionalize theirrelative 109 . Others may have promised, ‘‘I’ll never put you in anursing home’’, or ‘‘...til death do us part’’. Children, while morelikely than spouses to rely on formal services and less enduringthan spouse caregivers, nevertheless delay placement decisionsbecause of reluctance to reverse roles and take charge of a parent’slife 110 .Overall, the literature indicates that the care recipient’s extentof cognitive impairment, loss of self-care abilities, and disruptivebehaviors; mediated by caregiver age, employmentstatus, health, stress and burden, relationship with the carerecipient, duration of caregiving, and support and moderationby caregiver minority status, kinship relationship with the carerecipient, and use of in-home services and resources, arepredictive of institutionalization. Cohen et al. 105 describedseven variables that affect a caregiver’s decision to institutionalizea dependent elder with dementia: use of services; enjoymentof caregiving; caregiver burden and health; caregiver rating;reaction to care receiver behavior and memory problems; andpresence of troublesome behaviors. Six variables predicted actualinstitutionalization: caregiver health; caregiver burden; use ofservices; care receiver cognitive function; troublesome behaviors;and caregiver reaction to behaviors. Montgomery and Kosloski 110compared predictors of placement for adult child caregivers andspouse caregivers. Higher income, eligibility for Medicaid, lowermorale and age of the elder were associated with placement forboth groups, but other predictors of placement were different.Notably, level of affection predicted placement for children, butnot for spouses, while sense of obligation was predictive forspouses, but not for children, who were more likely to place thecare recipient in a nursing home at all points in time. Theprobability of placement declined with time for a while, thenleveled off, then rose as caregiving duration exceeded 30 months,with the probability increasing more sharply for child caregiversthan for spouses.Although the number of community services has increased tosupport family caregiving in the home, the extent to whichthese services are meeting the needs of caregivers is questioned111–113 . Collins et al. 114 found that 40% of familycaregivers who had placed their loved one with dementia in anursing home, reported that the availability of at least oneadditional community service would have delayed the institutionalization.The assumptions that family members know howto provide all of the care that is needed and that they haveaccess to the resources to assist them with provision of neededcare in the home are not valid, according to current research 112 .As a result, studies by Archbold et al. 115 , Brennan et al. 116 andBuckwalter et al. 117 have evaluated interventions to assist familycaregivers in the home with skills, anticipation of decisions and rolechanges and access to resources.The consideration of relocation raises the prospect of sharp roletransition. For most spouses, relocation changes a longstandingpattern of living together and providing for the other. Forchildren it can mean the restoration of a pattern in which the childis not living with, and/or is not directly responsible for, the care ofthe parent. Roles that were previously reversed from parentparenting child to child parenting parent are again reversed.Interviews conducted during the Family Involvement in Careresearch 118 revealed that adult child caregivers of persons withdementia found the decision to put parents in a nursing home verydistressing. Frequently reported comments were: ‘‘... the worsttime in my life’’; ‘‘... it about killed me to do it’’; ‘‘... it reallybothered me because I knew she would be angry with me’’, or ‘‘...my brothers didn’t agree with me and that was a worry’’. Whilespouses reported some of these feelings, they tended to be moreconcerned with the loss of spouse and of the role of caring for themate. Comments included: ‘‘... I knew I would miss him’’; ‘‘... Ihated thinking about not being able to take care of him’’; or ‘‘...Ikept thinking about how he would probably miss me and thethings I do for him’’.Persons with dementia placed in nursing homes may be highlyresistant and fearful of the change. Given their diminishedcapacity for reasoning, it can be impossible to convince themthat they require institutionalization. This presents a verystressful dilemma for family caregivers. It may be more difficultfor child caregivers than for spouses, because of the need toreverse roles. Constant requests to be taken home are especiallystressful to families. On the other hand, spouses may find itmore difficult if their long-term close relationship has beenaffectionate and loving. In Family Involvement in Care interviews118 , the majority of children, spouses and other relativesnoted that it was very hard to actually place the relative in anursing home. Comments were: ‘‘... I cried all the way home’’;‘‘... it was so empty at home and I felt so lonely’’; ‘‘... I knewshe would miss her things, so I took as much along as I could,pictures and such. She had so much and then so little, it didn’tseem fair’’; or ‘‘... he kept saying he wanted to go home andtried to leave with me ... it was so sad’’. Many of the samefamily members’ comments, however, indicated that they alsowere relieved, but ambivalent: ‘‘... it was hard, but I felt like aweight had been lifted’’; ‘‘... I feel guilty saying so, but I was soglad it was finally done’’; ‘‘... I felt free to do some things formyself again’’; or ‘‘... it was hard to do but I knew it was bestfor my family’’.