Planning Ahead for Dementia Research Participation: Insights from a Survey of Older Australians and Implications for Ethics, Law and Practice

Ries, N; Mansfield, E; Sanson-Fisher, R

Planning Ahead for Dementia Research Participation: Insights from a Survey of Older Australians and Implications for Ethics, Law and Practice

Ries, N

Mansfield, E Sanson-Fisher, R

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Publisher:: Springer Verlag
Publication Type:: Journal Article
Citation:: Journal of Bioethical Inquiry, 2019, 16 (3), pp. 415 - 429
Issue Date:: 2019-11-07

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Field	Value	Language
dc.contributor.author	Ries, N https://orcid.org/0000-0002-5264-6722	en_US
dc.contributor.author	Mansfield, E	en_US
dc.contributor.author	Sanson-Fisher, R	en_US
dc.date.issued	2019-11-07	en_US
dc.identifier.citation	Journal of Bioethical Inquiry, 2019, 16 (3), pp. 415 - 429	en_US
dc.identifier.issn	1872-4353	en_US
dc.identifier.uri	http://hdl.handle.net/10453/134746
dc.description.abstract	People with dementia have commonly been excluded from research. The adverse impacts of this exclusion are now being recognized and research literature, position statements, and ethics guidelines increasingly call for inclusion of people with dementia in research. However, few published studies investigate the views of potential participants on taking part in research should they experience dementia-related cognitive impairment. This cross-sectional survey examined the views of people aged sixty and older (n=174) attending hospital outpatient clinics about clinical research participation if they had dementia and impaired decision-making ability. Over 90 percent of respondents were agreeable to participating in a wide range of research activities, such as cognitive testing, physical measurements, imaging procedures, and blood draws. For drug studies, however, agreement dropped to 60 percent. Altruism was a strong motivator for research participation. In regard to who should be involved in decisions about their participation in research during periods of incapacity, respondents mostly preferred the person they appoint as their substitute decision-maker for healthcare matters (88%) or a doctor or health professional on the research team (78%). Over three-quarters (79%) expressed interest in making an advance research directive. The study findings are discussed in relation to law reforms in Australia that aim to strengthen respect and inclusion for people with impaired decision-making capacity, especially by providing frameworks for advance planning for research participation.	en_US
dc.publisher	Springer Verlag	en_US
dc.relation.ispartof	Journal of Bioethical Inquiry	en_US
dc.relation.isbasedon	10.1007/s11673-019-09929-x	en_US
dc.rights	This is a post-peer-review, pre-copyedit version of an article published in Journal of Bioethical Inquiry. The final authenticated version is available online at: https://dx.doi.org/10.1007/s11673-019-09929-x.	en_US
dc.subject.classification	Applied Ethics	en_US
dc.title	Planning Ahead for Dementia Research Participation: Insights from a Survey of Older Australians and Implications for Ethics, Law and Practice	en_US
dc.type	Journal Article
utslib.citation.volume	3	en_US
utslib.citation.volume	16	en_US
utslib.for	1801 Law	en_US
utslib.for	2201 Applied Ethics	en_US
utslib.for	2203 Philosophy	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Law
pubs.organisational-group	/University of Technology Sydney/Strength - HJ - Health Justice
utslib.copyright.status	open_access
pubs.consider-herdc	true	en_US
pubs.issue	3	en_US
pubs.publication-status	Published	en_US
pubs.volume	16	en_US

Abstract:

People with dementia have commonly been excluded from research. The adverse impacts of this exclusion are now being recognized and research literature, position statements, and ethics guidelines increasingly call for inclusion of people with dementia in research. However, few published studies investigate the views of potential participants on taking part in research should they experience dementia-related cognitive impairment. This cross-sectional survey examined the views of people aged sixty and older (n=174) attending hospital outpatient clinics about clinical research participation if they had dementia and impaired decision-making ability. Over 90 percent of respondents were agreeable to participating in a wide range of research activities, such as cognitive testing, physical measurements, imaging procedures, and blood draws. For drug studies, however, agreement dropped to 60 percent. Altruism was a strong motivator for research participation. In regard to who should be involved in decisions about their participation in research during periods of incapacity, respondents mostly preferred the person they appoint as their substitute decision-maker for healthcare matters (88%) or a doctor or health professional on the research team (78%). Over three-quarters (79%) expressed interest in making an advance research directive. The study findings are discussed in relation to law reforms in Australia that aim to strengthen respect and inclusion for people with impaired decision-making capacity, especially by providing frameworks for advance planning for research participation.

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http://hdl.handle.net/10453/134746