Mohammed T. Abou-Saleh

CAREGIVERS AND THEIR SUPPORT 757becomes increasingly agitated, stressed or disorientated. Themost commonly reported behavioral changes associated withdementia include neurovegetative symptoms (e.g. lethargy,social withdrawal), sleep disturbance, restlessness, wandering,assault, aggression, destroying property, verbally disruptivebehavior (e.g. screaming), and inappropriate sexual behavior47–51 . Behavioral problems are extensive in persons sufferingfrom dementia, appearing in up to 67% of care recipientsupon diagnosis 52 , approximately 65% of demented persons whoare institutionalized 49 , and 70–90% of persons with advanceddementia 53,54 . They worsen with disease progression and may berelated to fatigue, change, overstimulation, excessive demandsor physical stressors 23 . Problematic behaviors appear to have aprofound effect on caregivers’ stress, and a number ofinvestigators have concluded that these secondary symptomsare the most stressful to manage from a caregiving perspective46,55,56 . In fact, the one care recipient characteristic thatoverwhelmingly predicts caregiver distress is the degree towhich the care recipient demonstrates behavioral problems15,34,37,44,47,50,51,57 . Many investigators also report thatbehavioral problems are strong predictors of institutionalization47,57,58 .Other Factors that Influence Caregiver StressAs noted earlier, researchers typically theorize the stress of caregivingas chronic because caregivers face many years of continuousexposure to the daily demands of caregiving. However, over thedisease trajectory, the intensity and/or frequency of a caregiver’slevel of distress may vary widely. In an effort to better understandthis variability, investigators have identified a number of factorsassociated with differing levels of morbid outcomes. Of specialinterest are a number of variables that appear to moderate, orrender less harmful, the effects of caregiving among someindividuals.It appears that the amount of stress is influenced by whetheror not the caregiver is co-resident with the care recipient, theabruptness of onset of the care recipient’s disease, kinshiprelationship with the care recipient, and the coping strategiesused by caregivers 59,60 . Seltzer and Li 61 found that daughters inlater stages of caregiving had a more distant relationship withthe care recipient and more subjective burden than daughters inthe earlier stages, while wives evidenced the opposite pattern.Wives who had provided care for a longer time reported lessburden and a closer relationship with their husbands if theyperceived themselves to be in the later stages of caregiving. Thisfinding is supported by the longitudinal studies of Schulz andWilliamson 40 , which suggest that caregivers have successfullyadjusted to the rigors of caregiving and have learned to copewith the demands of the task. Evidence is mixed as to genderdifferences in the stress experienced once the caregiving role isundertaken 62 . Overall, the literature suggests that stress-relatedgender differences are more pronounced for caregivers of nondementedpersons 12 .Social support has been examined both as a correlate of distress(a main effect) and as a modifier of the relationship betweenstressful experiences and distress (an interaction effect). In thebroader stress and coping literature, social support has been aconsistent moderator of stress-related outcomes 63 , in that thepresence of a strong social network and satisfaction with supportis a powerful predictor of positive outcomes. Caregiving studiessuggest a direct effect of social support on measures of burden,but evidence for a buffering effect has been less clear 32 .In sum, research has identified potential exposure (carerecipient behaviors), vulnerability (e.g. age, gender, neuroticism,pre-existing hypertension) and resource (social support) variablesthat may either moderate or mediate relationships of caregivingpsychological distress with measures of physiological impairmentand illness. In spite of overwhelming evidence that caregiving isstressful, factors contributing to caregiver distress have not yetbeen delineated in a way that can effectively direct interventions orpreventive strategies.Dementia vs. Non-dementia CaregivingThere is evidence that family caring for a person with dementia ismore stressful than caring for a person who is not demented orwho has a physical limitation 64 . For example, Clipp and George 65found that family members caring for a person with a dementiawere more adversely affected by their role than family memberscaring for a relative with cancer. This relationship was notexplained by the duration of the illness or by whether or not thecaregiver was employed; however, younger spouse caregivers weremore adversely affected than older caregivers. In a review ofstudies of caregiving in different types of illnesses, Biegel et al. 66observed different patterns of distress. They concluded that thepattern of a peak distress period after initial diagnosis of acuteonset, followed by a reduction in distress as time passes, was notobserved in family caregivers of persons with gradual onset illnesswhere no relief of distress was observed 67 . Co-resident caregiversof persons with stroke and of persons with dementia experiencedsimilar degrees of burden and high levels of psychological distress,with psychiatric aspects of care resulting in greater stress thanphysical aspects 36 .POSITIVE AND NEGATIVE OUTCOMES OF FAMILYCAREGIVING FOR PERSONS WITH DEMENTIAAlthough family caregiving of persons with dementia is usuallyregarded as stressful and includes a variety of negative outcomes,there is growing consensus that this is not always the case 68 . Somecaregivers may receive satisfaction from the role 69,70 . Caregiverscan gain satisfactions, emotional uplifts, gains in self-esteem andself-efficacy, optimism, and growth and meaning from theirroles 71–74 .Impact of Caregiving on Health of CaregiversFindings of studies are inconsistent as to the effects of caring forpersons with dementia on family caregivers’ mental and physicalhealth. Some report no changes in emotional and physical healthand a decrease in depression over time, although far more reportworsening of depression and physical health 45,75–79 . Based on thefindings from several studies 44,59,60,80 Wright 81 suggests that theseinconsistent findings may be due to differences in coping strategiesemployed by caregivers.Mental Health OutcomesThere is extensive documentation that caregivers are at risk forhigh levels of psychological distress (e.g. burden, stress, depression,perceived hassles). Despite gaps in the literature anddifferences in research methods used, caregiver studies haveoverwhelmingly pointed to the adverse effects that caregiving forsomeone with troublesome behavioral symptoms can have on thecaregiver’s mental health 16,82,83 . A number of studies have alsorevealed negative changes due to the strains of direct care, griefassociated with the deterioration of their loved ones, socialisolation, and the role changes of caregiving, including care at