The quality of life of spouse dementia caregivers: changes associated with yielding to formal care and widowhood

Abstract

The focus of the study was the effect on spouse dementia caregivers of relinquishing care. The study used a longitudinal design, in which a group of 150 dementia caregivers were interviewed 2 years apart (designated Time 1 and Time 2), with data collected from both continuing caregivers and those who had relinquished care. The aims were to determine the extent to which changes over time in quality of life differed between continuing caregivers, those who had yielded to formal care, and those who had been widowed; and to examine whether change in quality of life variables was associated with time since yielding to formal care and time since death of the spouse. Quality of life was defined in terms of health status, psychological well-being, and activity participation. All participants were interviewed in their own homes. Three groups of participants were identified at Time 2: those who continued to provide care for their spouses (n=60); those who had yielded their caregiver role by admitting their spouses to permanent residential care (n=53); and those who had admitted their spouses to permanent institutional care, but whose spouse had then died (n=37). Different patterns of quality of life changes were observed between the three groups, with both positives and negatives associated with disengagement from the caregiving role. Positive changes were particularly evident in psychological well-being and activity participation. These findings were discussed in terms of their relevance for a life transitions approach to the relinquishment of caregiving.