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Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning

Published online by Cambridge University Press:  20 September 2013

Claire Dickinson ,
Claire Bamford ,
Catherine Exley ,
Charlotte Emmett ,
Julian Hughes  and
Louise Robinson
Claire Dickinson*
Affiliation:
Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK
Claire Bamford
Affiliation:
Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK
Catherine Exley
Affiliation:
Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK
Charlotte Emmett
Affiliation:
Centre for Mental Health Law, School of Law, Northumbria University, City Campus East, Newcastle-upon-Tyne NE1 8ST, UK
Julian Hughes
Affiliation:
Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, Newcastle University, c/o North Tyneside General Hospital, Rake Lane, North Shields NE29 8NH, UK
Louise Robinson
Affiliation:
Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK
*
Correspondence should be addressed to: Claire Dickinson, Lecturer in Social Gerontology, Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, United Kingdom. Phone: +44 0191 222 7445; Fax: + 44 (0) 191 222 6043. Email: claire.dickinson@ncl.ac.uk.
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Abstract

Background:

Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia.

Method:

This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically.

Results:

People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare.

Conclusions:

Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.

Keywords

advance care planningdementiaqualitative researchageingcarers
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 12 , December 2013 , pp. 2011 - 2021
Copyright
Copyright © International Psychogeriatric Association 2013 

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