International Psychogeriatrics

Review Article

Advance care planning for people with dementia: a review

Karen Harrison Deninga1a2 c1, Louise Jonesa2 and Elizabeth L. Sampsona2a3

a1 Dementia UK, London, UK

a2 Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College Medical School, London, UK

a3 Barnet Enfield and Haringey Mental Health Trust, London, UK

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.

(Received January 31 2011)

(Revised February 27 2011)

(Revised June 09 2011)

(Accepted July 03 2011)

(Online publication August 26 2011)

Correspondence:

c1 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.