Decision making at the end of life for people with dementia by their informal carers: a rapid scoping review

Sue Barker*, Mary Lynch, Jane Hopkinson

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

15 Citations (Scopus)


Background: There are an increasing number of people living with dementia and an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers.

Aim: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia.

Design: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all healthcare settings and the person’s own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question.

Results: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: influential factors in carer decision making, the scope of carer decision making, conflicts/problems in carer decision making, resources carers need to make decisions, and impact of carer decision making.

Conclusion: To date, the emphasis in dementia care has been one of living well with dementia, but realistically there is a need to plan for a ‘good death’ for the person and their carers. There is a need to support people with dementia and their carers to make an Advance Care Plan while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person’s preferred place, which is usually home/care home.
Original languageEnglish
Pages (from-to)446-456
Number of pages11
JournalInternational Journal of Palliative Nursing
Issue number9
Publication statusPublished - 2 Sep 2017
Externally publishedYes


  • carers
  • dementia
  • decision making
  • palliative care
  • health economics


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