End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia - A qualitative study

Dementia (London). 2016 Sep;15(5):958-75. doi: 10.1177/1471301214548521. Epub 2014 Sep 3.

Abstract

Background: End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions.

Aim: To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia.

Design: Qualitative research including a series of single cases (close family relatives).

Methods: A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010.

Results/findings: Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life.

Conclusions: Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia.

Keywords: advance care planning; dementia; end of life care; family caregivers; nursing home.

MeSH terms

  • Adult
  • Advance Care Planning*
  • Aged
  • Aged, 80 and over
  • Caregivers / psychology*
  • Decision Making
  • Dementia / psychology*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Qualitative Research
  • Terminal Care / psychology*