How couples with dementia experience healthcare, lifestyle, and everyday decision-making

Craig Sinclair, Kate Gersbach, Michelle Hogan, Romola S. Bucks, Kirsten A. Auret, Josephine M. Clayton, Meera Agar, Sue Kurrle

Research output: Contribution to journalArticlepeer-review

18 Citations (Scopus)


Objectives:: Recent research has demonstrated the challenges to self-identity associated with dementia, and the importance of maintaining involvement in decision-making while adjusting to changes in role and lifestyle. This study aimed to understand the lived experiences of couples living with dementia, with respect to healthcare, lifestyle, and “everyday” decision-making. Design:: Semi-structured qualitative interviews using Interpretative Phenomenological Analysis as the methodological approach. Setting:: Community and residential care settings in Australia. Participants:: Twenty eight participants who self-identified as being in a close and continuing relationship (N = 13 people with dementia, N = 15 spouse partners). Nine couples were interviewed together. Results:: Participants described a spectrum of decision-making approaches (independent, joint, supported, and substituted), with these approaches often intertwining in everyday life. Couples’ approaches to decision-making were influenced by “decisional,” “individual,” “relational,” and “external” factors. The overarching themes of “knowing and being known,” “maintaining and re-defining couplehood” and “relational decision-making,” are used to interpret these experiences. The spousal relationship provided an important context for decision-making, with couples expressing a history and ongoing preference for joint decision-making, as an integral part of their experience of couplehood. However, the progressive impairments associated with dementia presented challenges to maintaining joint decision-making and mutuality in the relationship. Conclusions:: This study illustrates relational perspectives on decision-making in couples with dementia. Post-diagnostic support, education resources, proactive dyadic interventions, and assistance for spouse care partners may facilitate more productive attempts at joint decision-making by couples living with dementia.

Original languageEnglish
Pages (from-to)1639-1647
Number of pages9
JournalInternational Psychogeriatrics
Issue number11
Early online date25 May 2018
Publication statusPublished - 1 Nov 2018


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