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 journalArticle

6 Citations (Scopus)

Abstract

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
Volume30
Issue number11
DOIs
Publication statusE-pub ahead of print - 25 May 2018

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Dementia
Life Style
Decision Making
Delivery of Health Care
Spouses
Joints
History
Interviews
Education
Research

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Sinclair, Craig ; Gersbach, Kate ; Hogan, Michelle ; Bucks, Romola S. ; Auret, Kirsten A. ; Clayton, Josephine M. ; Agar, Meera ; Kurrle, Sue. / How couples with dementia experience healthcare, lifestyle, and everyday decision-making. In: International Psychogeriatrics. 2018 ; Vol. 30, No. 11. pp. 1639-1647.
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How couples with dementia experience healthcare, lifestyle, and everyday decision-making. / Sinclair, Craig; Gersbach, Kate; Hogan, Michelle; Bucks, Romola S.; Auret, Kirsten A.; Clayton, Josephine M.; Agar, Meera; Kurrle, Sue.

In: International Psychogeriatrics, Vol. 30, No. 11, 25.05.2018, p. 1639-1647.

Research output: Contribution to journalArticle

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