Living with dementia: Lay definitions of Alzheimer's disease among African American caregivers and sufferers

Linda Liska Belgrave, G. Janice Allen-Kelsey, Kenneth J. Smith, Maritza C. Flores

Research output: Contribution to journalReview article

14 Scopus citations

Abstract

While the medical world aggressively pursues scientific knowledge about Alzheimer's disease, sufferers and caregivers live with this ailment, not as patients, but as people going about their lives, needing and providing care. This article reports explanations of Alzheimer's from the perspectives of African American family caregivers and sufferers. Data were collected from thirty-six families using participant observation and focus group interviews. Although caregivers sought and used medical expertise, their explanations of Alzheimer's were not only nonmedical, but not necessarily explanations of illness per se. Alzheimer's was presented instead as a way of being, pre-dominantly characterized by views of the sufferer as childlike and by issues of continuity/discontinuity, though some saw Alzheimer's as part of a larger picture.

Original languageEnglish (US)
Pages (from-to)199-222
Number of pages24
JournalSymbolic Interaction
Volume27
Issue number2
DOIs
StatePublished - 2004

ASJC Scopus subject areas

  • Nursing(all)
  • Social Psychology
  • Education
  • Communication
  • Sociology and Political Science
  • Social Sciences(all)

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