Dying with dementia: the views of family caregivers about quality of life

Abstract

Objective: To document the views of family caregivers of persons with dementia about quality of life for their relative during the late and terminal stages of the disease, as part of an exploratory study of best quality care and support.

Methods: Fifteen former caregivers (five wives, five husbands, two sons, three daughters) participated in in-depth semistructured interviews.

Results: Participants identified three main sets of indicators of quality of life: the physical body, the physical and social environment and treatment with respect and dignity. The constructs 'quality of life' and 'quality of care' tended to be conflated in the experience of caregivers. An important role for caregivers was to interpret and represent the subjective experience of the person with dementia.

Conclusion: Quality of life needs to be understood from multiple perspectives. Caregivers' views are a central part of this understanding and should be used to inform future research and service development.