Death of the personality: The grief response of the Alzheimer's disease family caregiver

Abstract

The grief that follows death is understood and accepted by society. However, the grief associated with certain chronic illness is often misunderstood by family, friends and acquaintances. Unlike a terminal case of cancer where physical deterioration is quite evident, it is difficult to under-stand the grief associated with irreversible dementia because the patient is physically well for most of its duration. What has died in victims of Alzheimer's disease (AD) is the personality that quality or assemblage of qualities that makes a person what he or she is.

This paper describes family care-giver responses to providing chronic care for a demented relative and compares and contrasts it with the responses of coping with a non-dementing terminal illness. Based upon our clinical work and empirical research with AD patients and their families, it seems that while many of the AD family caregiver responses are similar to bereavement reactions and anticipatory grieving of other terminal illnesses, the intensity and duration of their responses make them qualitatively different. I nplications for intervention with family caregivers and directions for further research are discussed.