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Advance care planning for people with dementia: a review

Published online by Cambridge University Press:  26 August 2011

Karen Harrison Dening ,
Louise Jones  and
Elizabeth L. Sampson
Karen Harrison Dening*
Affiliation:
Dementia UK, London, UK Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College Medical School, London, UK
Louise Jones
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College Medical School, London, UK
Elizabeth L. Sampson
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College Medical School, London, UK Barnet Enfield and Haringey Mental Health Trust, London, UK
*
Correspondence should be addressed to: Karen Harrison Dening, Practice Development Lead for Admiral Nursing, Dementia UK, 6 Camden High Street, London N1 0JH, UK. Phone: +44 (0)20 7874 7210; Fax: +44 (0)20 7874 7219. Email: karen.harrison-dening@dementiauk.org.
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Abstract

Background: Few people with dementia have made advance plans for their health care. Advance care planning (ACP) is a process of discussion between an individual and their care providers that takes account of wishes and preferences for future care. We aimed to examine the facilitators and inhibitors to ACP in people with dementia. We also aimed to identify key themes in the literature and critically review the methodologies used.

Methods: We systematically searched the English language literature including PubMed, CINAHL, AMED, PsychINFO, EMBASE and BNI. We included empirical studies which reported the characteristics of the patient population, the type of advance care planning used and the study setting, and which involved people with dementia, family members or professional carers.

Results: We identified 17 studies (11 quantitative methods, one qualitative and five mixed methods). We found one ACP intervention which changed outcomes for people with dementia. Key themes were identified: there is a point at which cognition decreases critically so that an advanced care plan can no longer be made; factors present in family carers and professionals can influence decision-making and the ACP process; ACPs are affected by preferences for life sustaining treatments; ACP in dementia may differ from other illness groups; and there is a need for education relating to ACP.

Conclusion: The current evidence base for ACP in dementia is limited. Since UK government policy recommends that all people should engage in ACP, more evidence is needed to understand the feasibility and acceptability of advanced care plans for people with dementia.

Keywords

advance care planningadvance directivesend-of-life carepalliative caredementiareview
Type
Review Article
Information
International Psychogeriatrics , Volume 23 , Issue 10 , December 2011 , pp. 1535 - 1551
Copyright
Copyright © International Psychogeriatric Association 2011

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