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

ABSTRACTObjectives: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...

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Bibliographic Details
Published in:International psychogeriatrics 2018-11, Vol.30 (11), p.1639-1647
Main Authors: Sinclair, Craig, Gersbach, Kate, Hogan, Michelle, Bucks, Romola S., Auret, Kirsten A., Clayton, Josephine M., Agar, Meera, Kurrle, Sue
Format: Article
Language:English
Subjects:
Adaptation, Psychological
Aged
Aged, 80 and over
Australia
Caregivers
Consent
Councils
Couples
Data analysis
Data collection
Decision Making
Delivery of Health Care
Dementia
Dementia - diagnosis
Elder care
Family Characteristics
Female
Funding
Humans
Interpersonal Relations
Interviews
Interviews as Topic
Life Style
Lifestyles
Male
Medical personnel
Older people
Original Research Article
Preferences
Qualitative Research
Research methodology
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Summary:ABSTRACTObjectives: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. Semi-structured qualitative interviews using Interpretative Phenomenological Analysis as the methodological approach. Community and residential care settings in Australia. 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. 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. 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.
ISSN:1041-6102
1741-203X
DOI:10.1017/S1041610218000741