Decision-making by family caregivers of elders experiencing dementia

Marsha Lewis, Kenneth Hepburn, Suzanne Narayan, Robin M. Lally, Sheila Corcoran-Perry, Melitta Maddox, Kyla Dropkin, Susan Hasse

Research output: Contribution to journalArticlepeer-review

14 Scopus citations


Families provide the majority of care for persons with Alzheimer's disease. Multiple aspects of caregiving, including decision-making, lead to caregiver burden and stress. The purpose of this pilot study was to describe the decision situations faced by caregivers. Nine female spouse caregivers participated in focus groups to solicit the decision situations they faced while caring for their husbands. Some 183 decision situations were grouped into 14 decision-making topics and five other topical categories: physical safety and wellness; cognitive and emotional; relationships; caregiver well-being; and legal. Categories were organized under two themes: decision situations related to self-care and decision situations related to spouse care. The majority of decision situations relate to maintaining the caregiver's well-being. Implications for nursing and further study are discussed.

Original languageEnglish (US)
Pages (from-to)361-366
Number of pages6
JournalAmerican Journal of Alzheimer's Disease and Other Dementias
Issue number6
StatePublished - Nov 2000
Externally publishedYes

ASJC Scopus subject areas

  • Neuroscience(all)
  • Clinical Psychology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health


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