The experience of caring for a family member with Alzheimer's disease

West J Nurs Res. 2001 Feb;23(1):33-55. doi: 10.1177/019394590102300104.


The purpose of this phenomenological study was to describe the experience of caring for a family member with Alzheimer's disease or related disorder (ADRD) living at home among a diverse sample of 103 family caregivers. The study involved secondary analysis of in-depth transcribed interview data using van Kaam's rigorous four phase, 12-step psychophenomenological method. A total of 2,115 descriptive expressions were categorized into 38 preliminary structural elements. Eight essential structural elements emerged from an analysis of the preliminary structural elements. The eight elements were then synthesized to form the following synthetic structural definition: Caring for a family member living at home with ADRD was experienced as "being immersed in caregiving; enduring stress and frustration; suffering through the losses; integrating ADRD into our lives and preserving integrity; gathering support; moving with continuous change; and finding meaning and joy."

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adaptation, Psychological*
  • Adult
  • Aged
  • Aged, 80 and over
  • Alzheimer Disease / nursing*
  • Alzheimer Disease / psychology*
  • Attitude to Health*
  • Caregivers / psychology*
  • Cost of Illness
  • Empathy*
  • Family / psychology*
  • Female
  • Grief
  • Home Nursing / methods
  • Home Nursing / psychology*
  • Humans
  • Longitudinal Studies
  • Male
  • Middle Aged
  • Nursing Methodology Research
  • Social Support
  • Stress, Psychological / etiology
  • Stress, Psychological / prevention & control
  • Stress, Psychological / psychology
  • Surveys and Questionnaires