Advance care planning and decision-making in dementia care: a literature review

Nurs Older People. 2020 Jul 15. doi: 10.7748/nop.2020.e1238. Online ahead of print.

Abstract

Dementia is the leading cause of death in England and Wales, but traditionally it has not been considered a terminal or life-limiting condition. As a result, little significance may be placed on advance care planning (ACP) for people with dementia. Evidence suggests that most patients with advanced dementia have often not been given an opportunity to complete an advance care plan and have not had conversations with their families about their wishes and preferences at the end of life. This article reports on a literature review that aimed to explore the evidence on the introduction of ACP in achieving preferred place of care or death for people living with dementia, and reducing carer burden. The literature review found that ACP discussions have several benefits for people with dementia and their family carers, but that various factors can support or hinder such discussions. It concludes that these people and their families need to plan for end of life and suggests that ACP can increase the likelihood of achieving their preferred place of care and death and reducing decisional burden for carers.

Keywords: advance care planning; carers; clinical; dementia; dying at home; end of life care; families; good death; neurology; patient engagement; patients; professional.