"A Real Bucket of Worms": Views of People Living with Dementia and Family Members on Supported Decision-Making

Craig Sinclair; Kate Gersbach; Michelle Hogan; Meredith Blake; Romola Bucks; Kirsten Auret; Josephine Clayton; Cameron Stewart; Sue Field; Helen Radoslovich; Meera Agar; Angelita Martini; Meredith Gresham; Kathy Williams; Sue Kurrle

doi:10.1007/s11673-019-09945-x

"A Real Bucket of Worms": Views of People Living with Dementia and Family Members on Supported Decision-Making

J Bioeth Inq. 2019 Dec;16(4):587-608. doi: 10.1007/s11673-019-09945-x. Epub 2019 Dec 12.

Authors

Affiliations

¹ Rural Clinical School of Western Australia, University of Western Australia Albany Centre, 31 Stirling Terrace, Albany, Western Australia, 6330, Australia. c.sinclair@unsw.edu.au.
² Brightwater Group, 3/355 Scarborough Beach Road, Osborne Park, Western Australia, 6017, Australia.
³ Helping Hand Aged Care, 34 Molesworth Street, North Adelaide, South Australia, 5006, Australia.
⁴ UWA Law School, University of Western Australia, 35 Stirling Highway, Crawley, Western Australia, 6009, Australia.
⁵ School of Psychological Science, University of Western Australia, 35 Stirling Highway, Crawley, Western Australia, 6009, Australia.
⁶ Rural Clinical School of Western Australia, University of Western Australia Albany Centre, 31 Stirling Terrace, Albany, Western Australia, 6330, Australia.
⁷ HammondCare Centre for Learning & Research in Palliative Care and Northern Clinical, School, Greenwich Hospital, University of Sydney, Sydney, New South Wales, 2065, Australia.
⁸ University of Sydney Law School, University of Sydney, Sydney, New South Wales, 2006, Australia.
⁹ UWA Law School, University of Western Australia, Hackett Drive, Crawley, Western Australia, 6009, Australia.
¹⁰ Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, (IMPACCT), University of Technology Sydney, 235 Jones Street, Ultimo, New South Wales, 2007, Australia.
¹¹ HammondCare Dementia Centre, 97 River Road, Greenwich, New South Wales, 2065, Australia.
¹² Dementia Australia Consumer Dementia Network, National Office, 42 MacQuarie Street, Barton, Canberra, Australian Capital Territory, 2600, Australia.
¹³ Northern Clinical School, University of Sydney, Sydney, New South Wales, 2006, Australia.

Abstract

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants' experiences with decision-making: "the person in relationship over time" and "maintaining involvement." Participant views on the practical issues associated with supported decision-making are addressed under the themes of "facilitating decision-making," "supported decision-making arrangements," "constraints on decision-making," and "safeguarding decision-making." While participants endorsed the principles of supported decision-making as part of their overarching strategy of "maintaining involvement" in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual "constraints on decision-making" also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a "spectrum approach" to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

Keywords: Alzheimer’s; Capacity; Dementia; Phenomenology; Substitute decision-making; Supported decision-making.

MeSH terms

Aged
Aged, 80 and over
Australia
Decision Making*
Dementia / psychology*
Family / psychology*
Female
Humans
Interviews as Topic
Male
Mental Competency / psychology
Middle Aged
Proxy / psychology
Time Factors

Grants and funding

1324/Cognitive Decline Partnership Centre