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

• 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
• ISSN: 1041-6102; 1741-203X
• DOI: 10.1017/S1041610218000741

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.