International Psychogeriatrics

Research Article

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

Claire Dickinsona1 c1, Claire Bamforda1, Catherine Exleya1, Charlotte Emmetta2, Julian Hughesa3 and Louise Robinsona1

a1 Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK

a2 Centre for Mental Health Law, School of Law, Northumbria University, City Campus East, Newcastle-upon-Tyne NE1 8ST, UK

a3 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

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.

(Received December 04 2012)

(Reviewed December 31 2012)

(Revised March 18 2013)

(Accepted August 07 2013)

(Online publication September 20 2013)

Key words:

  • advance care planning;
  • dementia;
  • qualitative research;
  • ageing;
  • carers

Correspondence

c1 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.