Living with dementia from the patient's perspective

J Gerontol Nurs. 1998 Jun;24(6):8-15. doi: 10.3928/0098-9134-19980601-06.


This study describes the illness experience of dementia from the patient's perspective. Five people with Alzheimer's disease and their spouses were interviewed and observed during home visits. Thematic analysis revealed two themes: being unsure and trying to be normal. Being unsure describes people's fluctuating experience of symptoms that leaves them feeling unsure of themselves in a world that is increasingly unfamiliar. Trying to be normal describes people's efforts to counter the impact of dementia to maintain continuity in their lives. These findings point to the importance of taking into account the patient's perspective to better understand the experience of living with dementia and develop improved treatment and care practices.

Publication types

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

MeSH terms

  • Activities of Daily Living*
  • Adaptation, Psychological*
  • Aged
  • Aged, 80 and over
  • Alzheimer Disease / nursing
  • Alzheimer Disease / psychology*
  • Animals
  • Attitude to Health
  • Female
  • Humans
  • Internal-External Control
  • Male
  • Nursing Methodology Research
  • Self Concept
  • Spouses / psychology
  • Surveys and Questionnaires