Long-term consequences of the Alzheimer's caregiver role: a qualitative analysis

Am J Alzheimers Dis Other Demen. 2001 May-Jun;16(3):177-82. doi: 10.1177/153331750101600306.


A qualitative analysis was performed on responses of 51 participants to open-ended questions about the experience of being family caregivers for a loved one affected by Alzheimer's disease. Participants had been in the caregiver role for at least eight years. Results indicated a pattern of adapting successfully or unsuccessfully to the caregiver role, experiencing initial caregiver burden, finding relief in social support when available, and long-term distress or long-term positive change. Memories and feelings were strong about individuals and institutions that had been helpful or indifferent many years earlier as the caregivers struggled to cope with their unplanned predicament.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological*
  • Adult
  • Aged
  • Alzheimer Disease / nursing
  • Alzheimer Disease / psychology*
  • Caregivers / psychology*
  • Cost of Illness
  • Female
  • Follow-Up Studies
  • Guilt
  • Home Nursing / psychology*
  • Homes for the Aged
  • Humans
  • Long-Term Care / psychology
  • Male
  • Middle Aged
  • Nursing Homes
  • Patient Admission
  • Social Support