Constructing Alzheimer's: Narratives of lost identities, confusion and loneliness in old age

This paper is a qualitative study based on retrospective, unstructured, qua litative interviews with Mrs. Jones and other African-American, Chinese-Ame rican, Irish-American and Latino family caregivers in the Boston area. A na rrative approach is used to show how family caregivers draw on their cultur al and personal resources to create stories about the nature and meaning of illness and to ask how ethnic identity may influence the kinds of stories family caregivers tell. Three different story types are identified and desc ribed, each with a distinctive configuration of illness meanings and overar ching theme, or storyline: a subset of African-American, Irish-American, an d Chinese-American caregivers told us stories about Alzheimer's as a diseas e that erodes the core identity of a loved one and deteriorates their minds ; a subset of Chinese caregivers narrated stories that emphasized how famil ies managed confusion and disabilities, changes ultimately construed as an expected part of growing old; a subset of Puerto Rican and Dominican famili es, while using the biomedical label of Alzheimer's disease or dementia, pl aced the elder's illness in stories about tragic losses, loneliness, and fa mily responsibility. To construct their stories, caregivers drew upon both biomedical explanations and other cultural meanings of behavioral and cogni tive changes in old age. Their stories challenge us to move beyond the shar p contrast between ethnic minority and non-ethnic minority views of dementi a-related changes, to local clinics and hospitals as sites where biomedical knowledge is interpreted, communicated, discussed, and adapted to the pers pectives and lived realities of families.