Mohammed T. Abou-Saleh

756 PRINCIPLES AND PRACTICE OF GERIATRIC PSYCHIATRYcalculated solely in economic terms. A large body of research hasestablished that there are also profound effects of caregivingassociated with poor health-related outcomes 15,16 , as detailed laterin this chapter.CAREGIVER STRESS AND BURDEN AND ITSIMPACT ON CAREGIVER WELL-BEINGConcomitant with an increase in the prevalence of dementia isan escalation of the physical, emotional and economic burdensof dementia care. The concept of caregiver burden has beenadvanced as an all-encompassing term that refers to thefinancial, social, physical and emotional effects of caring for afamily member with dementia 17 . Subjective burden, the caregiver’sperception of the caregiving experience, is distinguishedfrom objective burden, the actual changes in the caregiver’shome situation 18 . Studies of the burden and stress of caring fora person with dementia, the resulting effects on mental andphysical health outcomes of family caregivers, and the use of avariety of interventions to relieve adverse effects of caregivingburden are numerous. More recent research also has focused onthe positive aspects associated with caregiving. Major findingsfrom this body of research are summarized throughout thischapter.Family caregivers of persons with ADRD experience numerousstressors that affect their health and well-being and precipitateinstitutionalization of the care recipient. Hence, the notion of‘‘stress’’ has emerged as an important concept in dementiacaregiver research 3 . The words ‘‘stress’’, ‘‘burden’’ and ‘‘distress’’are often used interchangeably and are conceptualized to havesimilar meaning. George and Gwyther 19 defined the concept ofdementia caregiver stress as: ‘‘the physical, psychological oremotional, social and financial problems that can be experiencedby family members caring for impaired older adults’’ (p. 243). Avariety of factors related to the symptoms associated with ADRDcause caregiver stress, including cognitive changes, loss of abilityto function in daily activities, and behavioral disturbances.Spouses of persons with dementia may be at greatest risk forcaregiver stress, since they are often elderly themselves. They mayalso have physical, psychological and financial challenges thatcould decrease their ability to respond to the demands ofcaregiving 20,21 .Models of Caregiver StressA number of theoretical frameworks have been used to guidestudies of persons with dementia, their family caregivers and theeffects of interventions on outcomes for both 22–28 . Stress models,in particular, have guided much of this research. However, modelsthat predict a simple positive linear relationship between caregiverstress and the care recipient’s level of impairment, such thatcaregivers providing assistance to the most behaviorally impairedpersons report the greatest degree of burden, are not supported bythe literature 29,30 . Rather, research indicates that caregiver stress isrelated to a number of care recipient and caregiver variables 31and, as such, is a multivariate phenomenon.Caregiver stress is moderated by many factors, including thecaregiver’s available resources, such as good physical health,social support, financial assets, coping abilities and personalityDistress =Figure 138b.1Exposure to stressors + VulnerabilityPsychological resources + Social resourcestraits 17 . Although a number of multivariate models of caregiverdistress exist, space limitations preclude a review of extantmodels in this chapter. Rather, Vitaliano’s model of distress 32(Figure 138b.1) is set forth as an example of one useful modelfor understanding caregiver stress, because the variables ofinterest are well grounded in the caregiving and theoreticalstress literature. Additionally, the model allows for thestratification of resources and vulnerability variables, whichimproves the chances of detecting relationships among stressors,resources and burden. In Vitaliano’s model, both caregiver andcare recipient variables, as well as psychological and socialresources of the caregiver, are postulated to contribute tocaregiver distress 32 .The underlying assumption of research on caregiving stressand health outcomes is that the chronic stress of caregiving canlead, via vulnerabilities and limited resources, to psychologicalor physiological distress and illness. Vitaliano’s model, forexample, considers both psychological and biological markersof distress. Since data overwhelmingly suggest negative psychologicalconsequences of caregiver stress, biological outcomesallow for assessment of the impact of the psychological distresson major physiological systems. As noted earlier, in caregiverresearch, multivariate models provide a more comprehensivepicture of a caregiver’s level of distress than either psychologicalor physiological variables alone 32 . Moreover, sinceVitaliano’s model of distress is expressed as a mathematicalformula, a caregiver’s level of distress (burden) may improve bydecreasing undesirable variables or by increasing desirablevariables.STRESSORS ASSOCIATED WITH FAMILYCAREGIVINGProviding care for a family member with dementia is conceptualizedas a chronic stressor 33 . Symptoms of dementia that thecaregiver must contend with include (but are not limited to)progressive loss of: memory; judgment; the ability to interpretabstractions; language and motor deficits; and altered personality.Dementia results in profound cognitive and behavioral changesthat culminate in an inability to perform instrumental activities ofdaily living, such as cooking and managing money, as well asbasic activities of daily living (ADLs), such as bathing andtoileting. The level of functional (ADL and/or IADL) impairmentin care recipients was related to caregiver burden in one study 15 ,although a larger number of studies found no association betweenthese variables 34–41 . Similarly, no evidence of a relationship existsbetween the care recipient’s level of cognitive impairment and thecaregiver’s level of burden 34,35,39,42–44 .The course of the illness is unpredictable, as is the rapidity ofdecline; the only certainty is that the progressive cognitiveimpairments that characterize dementia will lead to an increasingneed for supportive care and eventual death for the person withdementia. As the illness progresses, caregivers must be increasinglyvigilant, since dementia patients may elope from home orinjure themselves. In the final stages, patients are often completelydependent on their caregivers and need to be fed, bathed, toileted,transferred and dressed. Providing care to a person with dementiaeventually becomes an all-consuming 24-h job, which may extendfor 10 years or longer 45,46 .Behavioral Impairments in Care RecipientsThe stress of providing 24 h care for a person with dementia iscomplicated by the development of episodic, problematic (orcatastrophic) behaviors, when the person with dementia