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Planning for tomorrow whilst living for today
 — the views of people with dementia and their families on advance care planning
Author(s)Claire Dickinson, Claire Bamford, Catherine Exley
Journal titleInternational Psychogeriatrics, vol 25, no 12, December 2013
PublisherCambridge University Press, December 2013
Pagespp 2011-2021
Sourcewww.journals.cambridge.org
KeywordsDementia ; Family care ; Advance directives ; Management [care] ; Planning [admin] ; Attitude.
AnnotationAdvance 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. This qualitative study used semi-structured interviews with people with mild to moderate dementia and family carers to investigate their views about planning for their future generally and ACP specifically. Study findings revealed that people with dementia and their families made 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. 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. (JL).
Accession NumberCPA-150619226 A
ClassmarkEA: P6:SJ: CXB: QA: QA6: DP

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