Dementia and research participation
People with dementia experience barriers to taking part in research. Professor Nola Ries leads a program of research involving dementia researchers and consumers, which has produced new knowledge and practical resources to support advance planning for research participation.
Advance research planning is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. It may include making an advance research directive (ARD) to document one’s wishes as well as choosing trusted people to be involved in decisions about research participation.
Activities
Project activities included surveys and interviews with dementia researchers and community members, including people with interests in dementia research.
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The research has produced an advance research directive template and an accompanying guidance booklet.
Please also visit our resources page.
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Publications
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Nola Ries & Briony Johnston, "Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research" (2023) 45(3) Ethics & Human Research 2-17, https://doi.org/10.1002/eahr.500171
Nola Ries et al, "Advance planning for research participation: Time to translate this innovation into practice" (2023) 42(1) Aust J Ageing 225-233, https://doi.org/10.1111/ajag.13161
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Nola Ries & Elise Mansfield, “Advance Research Directives: A Qualitative Study of Dementia Researchers’ Views on a Prototype Directive and Implementation Strategies” (2021) 43(3) Ethics & Health Research 10-25
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Annmarie Hosie, Slavica Kochovska, Nola M Ries, et al. “Older Persons’ and Their Caregivers’ Perspectives and Experiences of Research Participation with Impaired Decision-making Capacity: A Scoping Review” (2022) 62(2) The Gerontologist 112-122
Bryant J, Freund M, Ries N, et al. “Volume, scope, and consideration of ethical issues in Indigenous cognitive impairment and dementia research: A systematic scoping review of studies published between 2000-2021” (2022) 21(8) Dementia 2647-2676
Nola M Ries, Elise Mansfield & Rob Sanson-Fisher, “Advance Research Directives: Legal and Ethical Issues and Insights from a National Survey of Dementia Researchers in Australia” (2020) 28(2) Medical Law Review 375-400 https://doi.org/10.1093/medlaw/fwaa003
Nola Ries, Elise Mansfield & Rob Sanson-Fisher, “Ethical and Legal Aspects of Research Involving Older People with Cognitive Impairment: A Survey of Dementia Researchers in Australia” (2020) 68 International Journal of Law and Psychiatry https://doi.org/10.1016/j.ijlp.2019.101534
Nola Ries & Michael Thomson, “Bioethics and Universal Vulnerability: Exploring the Ethics and Practices of Research Participation” (2020) 28(2) Medical Law Review 293-316 https://doi.org/10.1093/medlaw/fwz026
Nola Ries, Elise Mansfield & Rob Sanson-Fisher, “Planning Ahead for Dementia Research Participation: Insights from a Survey of Older Australians and Implications for Ethics, Law and Practice” (2019) 16(3) Journal of Bioethical Inquiry 415-429
Nola Ries, Katie Thompson & Michael Lowe, "Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform" (2017) 14(3) Journal of Bioethical Inquiry