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Anticipatory grief and dementia Higginbotham, Susan Joan


This paper explores anticipatory grief as the experience of adult children caring for parents with Alzheimer’s, multi-infarct, and Parkinson’s dementias. Interviews were conducted with 10 daughters and two sons whose parents had been institutionalized in a special care unit of a long-term care facility. The age of the adult children ranged from 35 to 55. Forty percent of the adult children had no partner, 35 percent had no partner or sibling. All but one worked outside the home. Since onset and throughout the illness of the parent the adult children expressed a wide range of grief responses. Feelings of loss, uncertainty, and sadness predominated their experience. Their greatest loss was loss of relationship with the parent. The adult children’s grief did not subside at the time of facility placement. The grief intensified as feelings of helplessness and hopelessness were experienced as the adult children continue to watch the physical and mental deterioration of the parent. Society neither recognizes nor supports anticipatory grief associated with the dementing illnesses. The study calls for more research of family caregivers and anticipatory grief in response to the irreversible dementias. Loss of quality of life and human dignity was expressed by the adult children as violation of the parent. Quality of life for aged people with Alzheimer’s and related dementing disorders is becoming an ethical issue of our time.

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