Couples affected by dementia and their experiences of advance care planning: a grounded theory study

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 isencouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in partsof Europe. Using a constructivist grounded theory methodology this study explores the waysin which co-residing couples considered ACP. Specifically it seeks to understand the ways inwhich people with dementia and their long-term co-residing partners consider and plan, or donot plan, for the future medical and social care. Sixteen participants were interviewed. Theyidentified the importance of relationships in the process of planning alongside an absence offormal service support and as a result few engaged in ACP. The study recognises thefundamental challenges for couples in being obliged to consider end of life issues whilstmaking efforts to ‘live well’. Importantly the paper identifies features of the ACP experienceof a relational and biographical nature. The paper challenges the relevance of current globalpolicy and practice, concluding that what is evident is a process of ‘emergent planning’ throughwhich couples build upon their knowledge of dementia, their networks and relationships and anumber of ‘tipping points’ leading them to ACP. The relational and collective nature of futureplanning is also emphasised.