TY  - JOUR
AB  - Copyright © International Psychogeriatric Association 2018. 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.
AU  - Sinclair, C
AU  - Gersbach, K
AU  - Hogan, M
AU  - Bucks, RS
AU  - Auret, KA
AU  - Clayton, JM
AU  - Agar, M
AU  - Kurrle, S
DA  - 2018/11/01
DO  - 10.1017/S1041610218000741
EP  - 1647
JO  - International Psychogeriatrics
PY  - 2018/11/01
SP  - 1639
TI  - How couples with dementia experience healthcare, lifestyle, and everyday decision-making
VL  - 30
Y1  - 2018/11/01
Y2  - 2026/07/26
ER  -