Constructing Alzheimer's

Narratives of lost identities, confusion and loneliness in old age

W Ladson Hinton, Sue Levkoff

Research output: Contribution to journalArticle

90 Citations (Scopus)

Abstract

This paper is a qualitative study based on retrospective, unstructured, qualitative interviews with Mrs. Jones and other African-American, Chinese-American, Irish-American and Latino family caregivers in the Boston area. A narrative approach is used to show how family caregivers draw on their cultural 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 described, each with a distinctive configuration of illness meanings and overarching theme, or storyline: a subset of African-American, Irish-American, and Chinese-American caregivers told us stories about Alzheimer's as a disease that erodes the core identity of a loved one and deteriorates their minds; a subset of Chinese caregivers narrated stories that emphasized how families managed confusion and disabilities, changes ultimately construed as an expected part of growing old; a subset of Puerto Rican and Dominican families, while using the biomedical label of Alzheimer's disease or dementia, placed the elder's illness in stories about tragic losses, loneliness, and family responsibility. To construct their stories, caregivers drew upon both biomedical explanations and other cultural meanings of behavioral and cognitive changes in old age. Their stories challenge us to move beyond the sharp contrast between ethnic minority and non-ethnic minority views of dementia-related changes, to local clinics and hospitals as sites where biomedical knowledge is interpreted, communicated, discussed, and adapted to the perspectives and lived realities of families.

Original languageEnglish (US)
Pages (from-to)453-475
Number of pages23
JournalCulture, Medicine and Psychiatry
Volume23
Issue number4
StatePublished - 1999

Fingerprint

Confusion
Loneliness
old age
Caregivers
caregiver
narrative
dementia
Asian Americans
illness
African Americans
Alzheimer Disease
Hispanic Americans
Dementia
Old Age
Alzheimer
ethnic identity
qualitative interview
national minority
Interviews
disability

Keywords

  • Alzheimer's disease
  • Dementia
  • Ethnicity
  • Family caregiving
  • Narrative

ASJC Scopus subject areas

  • Psychiatry and Mental health
  • Social Sciences (miscellaneous)
  • Anthropology

Cite this

Constructing Alzheimer's : Narratives of lost identities, confusion and loneliness in old age. / Hinton, W Ladson; Levkoff, Sue.

In: Culture, Medicine and Psychiatry, Vol. 23, No. 4, 1999, p. 453-475.

Research output: Contribution to journalArticle

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