TY - JOUR
KW - Adaptation, Psychological
KW - Aged
KW - Aged, 80 and over
KW - Australia
KW - Caregivers
KW - Decision Making
KW - Delivery of Health Care
KW - Dementia/diagnosis
KW - Family Characteristics
KW - Female
KW - Humans
KW - Interpersonal Relations
KW - Interviews as Topic
KW - Life Style
KW - Male
KW - Qualitative Research
KW - Dementia
KW - Family Therapy
KW - medical-legal issues
KW - mental capacity
AU - Craig Sinclair
AU - Kate Gersbach
AU - Michelle Hogan
AU - Romola S. Bucks
AU - Kirsten A. Auret
AU - Josephine M. Clayton
AU - Meera Agar
AU - Sue Kurrle
A1 - 
AB - 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. 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.
AD - Rural Clinical School of Western Australia,University of Western Australia,Albany,Australia.; Brightwater Care Group,Perth,Australia.; Helping Hand Aged Care,Adelaide,Australia.; School of Psychological Science,University of Western Australia,Perth,Australia.; Rural Clinical School of Western Australia,University of Western Australia,Albany,Australia.; HammondCare,Sydney Medical School,University of Sydney,Sydney,Australia.; University of Technology Sydney,Sydney,Australia.; University of Sydney,Sydney,Australia.
BT - International psychogeriatrics
C5 - Education & Workforce; Healthcare Disparities
CP - 11
CY - England
DO - 10.1017/S1041610218000741
IS - 11
JF - International psychogeriatrics
LA - eng
M1 - Journal Article
N2 - 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. 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.
PP - England
PY - 2018
SN - 1741-203X; 1041-6102
SP - 1639
EP - 1647
EP - 
T1 - How couples with dementia experience healthcare, lifestyle, and everyday decision-making
T2 - International psychogeriatrics
TI - How couples with dementia experience healthcare, lifestyle, and everyday decision-making
U1 - Education & Workforce; Healthcare Disparities
U2 - 29798741
U3 - 10.1017/S1041610218000741
VL - 30
VO - 1741-203X; 1041-6102
Y1 - 2018
Y2 - Nov
ER -