End of life care: A scoping review of experiences of Advance Care Planning for people with dementia.

Kerry Jones, Giles Birchley, Richard Huxtable, Linda Clare, Julian Walter, Jeremy Dixon

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Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease. People with severe dementia have complex physical and psychological needs, yet the disease is not always recognised as terminal. Advance Care Planning involving people with dementia and their families can provide opportunities to discuss and later, initiate timely palliative care.
We conducted a scoping review of studies exploring decisions associated with the EoLC of people with dementia. Eligible studies had to report on decision making at the end of life and by whom (the dying person, clinician/health professional or relative/family member).
Twenty-five eligible studies reported on Advance Care Planning and end of life care decisions for individuals with dementia. The papers highlight several challenges that need to be addressed in order to provide adequate and effective care for people with dementia as they near the end of their life.
Original languageEnglish
Pages (from-to)825-845
Number of pages21
JournalDementia: the international journal of social research and practice
Issue number3
Early online date7 Nov 2016
Publication statusPublished - 1 Apr 2019


  • Dementia
  • end-of-life care
  • advanced care planning
  • decision making
  • death
  • dying


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