“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

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)587-608
Number of pages22
JournalJournal of Bioethical Inquiry
Volume16
Issue number4
DOIs
Publication statusPublished - 1 Dec 2019

Fingerprint

dementia
family member
Dementia
Decision Making
decision making
legal capacity
International Cooperation
Civil Rights
Aptitude
Disabled Persons
treaty
experience
human rights

Cite this

Sinclair, Craig ; Gersbach, Kate ; Hogan, Michelle ; Blake, Meredith ; Bucks, Romola ; Auret, Kirsten ; Clayton, Josephine ; Stewart, Cameron ; Field, Sue ; Radoslovich, Helen ; Agar, Meera ; Martini, Angelita ; Gresham, Meredith ; Williams, Kathy ; Kurrle, Sue. / “A Real Bucket of Worms” : Views of People Living with Dementia and Family Members on Supported Decision-Making. In: Journal of Bioethical Inquiry. 2019 ; Vol. 16, No. 4. pp. 587-608.
@article{2f0b9ab2810340f5a430633d7e2117c3,
title = "“A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making",
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",
author = "Craig Sinclair and Kate Gersbach and Michelle Hogan and Meredith Blake and Romola Bucks and Kirsten Auret and Josephine Clayton and Cameron Stewart and Sue Field and Helen Radoslovich and Meera Agar and Angelita Martini and Meredith Gresham and Kathy Williams and Sue Kurrle",
year = "2019",
month = "12",
day = "1",
doi = "10.1007/s11673-019-09945-x",
language = "English",
volume = "16",
pages = "587--608",
journal = "Journal of Bioethical Inquiry",
issn = "1176-7529",
publisher = "Springer",
number = "4",

}

“A Real Bucket of Worms” : Views of People Living with Dementia and Family Members on Supported Decision-Making. / Sinclair, Craig; Gersbach, Kate; Hogan, Michelle; Blake, Meredith; Bucks, Romola; Auret, Kirsten; Clayton, Josephine; Stewart, Cameron; Field, Sue; Radoslovich, Helen; Agar, Meera; Martini, Angelita; Gresham, Meredith; Williams, Kathy; Kurrle, Sue.

In: Journal of Bioethical Inquiry, Vol. 16, No. 4, 01.12.2019, p. 587-608.

Research output: Contribution to journalArticle

TY - JOUR

T1 - “A Real Bucket of Worms”

T2 - Views of People Living with Dementia and Family Members on Supported Decision-Making

AU - Sinclair, Craig

AU - Gersbach, Kate

AU - Hogan, Michelle

AU - Blake, Meredith

AU - Bucks, Romola

AU - Auret, Kirsten

AU - Clayton, Josephine

AU - Stewart, Cameron

AU - Field, Sue

AU - Radoslovich, Helen

AU - Agar, Meera

AU - Martini, Angelita

AU - Gresham, Meredith

AU - Williams, Kathy

AU - Kurrle, Sue

PY - 2019/12/1

Y1 - 2019/12/1

N2 - 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.

AB - 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.

KW - Alzheimer’s

KW - Capacity

KW - Dementia

KW - Phenomenology

KW - Substitute decision-making

KW - Supported decision-making

UR - http://www.scopus.com/inward/record.url?scp=85076548054&partnerID=8YFLogxK

U2 - 10.1007/s11673-019-09945-x

DO - 10.1007/s11673-019-09945-x

M3 - Article

VL - 16

SP - 587

EP - 608

JO - Journal of Bioethical Inquiry

JF - Journal of Bioethical Inquiry

SN - 1176-7529

IS - 4

ER -