Stress, role captivity, and the cessation of caregiving

Difficulties experienced when caring for an impaired elderly relative, including decisions to place this person in institutional care, are examined as a function of caregiver stress. Three annual interviews were conducted with 555 caregivers to parents or spouses with Alzheimer's Disease. All patients were initially cared for at home, but 192 were subsequently placed in institutional care and 146 died. Background-contextual factors and disease characteristics have only limited associations with institutionalization. Two secondary stressors--consequences of caregiving that do not directly involve care-related tasks--exert the most proximal impact upon placement: role captivity and economic strain. Role captivity is stable over time when in-home care continues, but institutionalization alleviates this sentiment. The odds of patient death increase substantially following institutionalization, even when health status is controlled. These results illustrate that in-home care may be beneficial for care-recipients, but increase role-related stress for the care provider.