Couples affected by dementia and their experiences of advance care planning

A grounded theory study

Bibliographic Data

ID11200737
AuthorsTony Ryan (0000-0002-8549-3101, University of Sheffield, corresponding author), Jane McKeown (0000-0003-2920-4931, University of Sheffield)
Year2020
Volume40
Issue2
Pages439-460
Publication date2020-02-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueAgeing and Society (JOURNAL)
Journal identifiersISSN: 0144-686X • E-ISSN: 1469-1779
PublisherCambridge University Press (CUP) (PUBLISHER)
DOI10.1017/s0144686x1800106x
OpenAlexW2894009070
LanguageEN
Citations received2
References cited47

Global policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised

Advance care planning · Constructivist grounded theory · Dementia · Geography · Grounded theory · Management · Palliative care · Plan (archaeology) · Political science · Process (computing) · Public relations · Qualitative research · Rational planning model · Relevance (law) · Social science · Sociology · Computer Science · Family Support in Illness · Grief, Bereavement, and Mental Health · Law · Medicine · Nursing · Palliative Care and End-of-Life Issues · Psychology

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