End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia

Dementia (London). 2019 Apr;18(3):825-845. doi: 10.1177/1471301216676121. Epub 2016 Nov 7.


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.

Keywords: Advance Care Planning; death; decision-making; dementia; dying; end-of-life care.

Publication types

  • Review

MeSH terms

  • Advance Care Planning*
  • Decision Making*
  • Dementia / nursing*
  • Dementia / psychology
  • Family / psychology
  • Health Personnel
  • Humans
  • Palliative Care
  • Terminal Care*