{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T02:16:50Z","timestamp":1792117010558,"version":"4.4.0"},"reference-count":61,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2019,12,1]],"date-time":"2019-12-01T00:00:00Z","timestamp":1575158400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2019,12,12]],"date-time":"2019-12-12T00:00:00Z","timestamp":1576108800000},"content-version":"vor","delay-in-days":11,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Cognitive Decline Partnership Centre","award":["1324"],"award-info":[{"award-number":["1324"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Bioethical Inquiry"],"published-print":{"date-parts":[[2019,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>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\u2019 experiences with decision-making: \u201cthe person in relationship over time\u201d and \u201cmaintaining involvement.\u201d Participant views on the practical issues associated with supported decision-making are addressed under the themes of \u201cfacilitating decision-making,\u201d \u201csupported decision-making arrangements,\u201d \u201cconstraints on decision-making,\u201d and \u201csafeguarding decision-making.\u201d While participants endorsed the principles of supported decision-making as part of their overarching strategy of \u201cmaintaining involvement\u201d 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 \u201cconstraints on decision-making\u201d also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a \u201cspectrum approach\u201d 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.<\/jats:p>","DOI":"10.1007\/s11673-019-09945-x","type":"journal-article","created":{"date-parts":[[2019,12,30]],"date-time":"2019-12-30T15:02:31Z","timestamp":1577718151000},"page":"587-608","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":36,"title":["\u201cA Real Bucket of Worms\u201d: Views of People Living with Dementia and Family Members on Supported Decision-Making"],"prefix":"10.1007","volume":"16","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2734-2951","authenticated-orcid":false,"given":"Craig","family":"Sinclair","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Gersbach","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Hogan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meredith","family":"Blake","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Romola","family":"Bucks","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kirsten","family":"Auret","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Josephine","family":"Clayton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cameron","family":"Stewart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sue","family":"Field","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"Radoslovich","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meera","family":"Agar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angelita","family":"Martini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meredith","family":"Gresham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathy","family":"Williams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sue","family":"Kurrle","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2019,12,12]]},"reference":[{"key":"9945_CR1","volume-title":"Spectrums of support: A report on a project exploring supported decision making for people with disability in the ACT","author":"ACT Disability, Aged and Carer Advocacy Service (ADACAS)","year":"2013","unstructured":"ACT Disability, Aged and Carer Advocacy Service (ADACAS). 2013. 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