Advance care planning and dementia: whose decision?

Jones, Kerry (2018). Advance care planning and dementia: whose decision? In: Advance Care Planning, decision making and agency, 16 May 2018, Centre for Death and Society, University of Bath, UK.


In this review of 25 papers the majority of data gathered by studies was largely retrospective involving surveys, documentary analysis of patient records and interviews with families, clinicians or those directly involved in a patient’s end of life care.

Our synthesis generated 3 main themes with a focus on decision making and who decides, system factors and quality of death including the withdrawal of treatment. The papers indentified the role of families and health care professionals in decision making, although to a much less extent, the role of the person with dementia. Discussions took place in dyad’s (between carers and professionals or between professionals and families).

Initial findings and central themes
What we found demonstrated that decision making is influenced by several factors:
* Legal issues and ACP and AD which are complex and vary internationally
* Future preferences and how and when to initiate these conversations i.e. in the early stages
* But who does this? And is it distressing to imagine a future self
* HP identification with a lack of training and responsibility for this
* Lack of co-ordinated care and out of hours services.

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