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

  • Craig Sinclair (a1), Kate Gersbach (a2), Michelle Hogan (a3), Romola S. Bucks (a4), Kirsten A. Auret (a1), Josephine M. Clayton (a5), Meera Agar (a6) and Sue Kurrle (a7)...
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.

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Copyright
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
Corresponding author
Correspondence should be addressed to: Craig Sinclair, Rural Clinical School of Western Australia, University of Western Australia, Sydney, Australia. Phone: (+61 8) 9842 0829; Fax: (+61 8) 9842 0879. Email: craig.sinclair@rcswa.edu.au.
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International Psychogeriatrics
  • ISSN: 1041-6102
  • EISSN: 1741-203X
  • URL: /core/journals/international-psychogeriatrics
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