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

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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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Notes

  1. The 2016 Australian census data reports that, of people aged sixty and older, 54 percent are women and 46 percent are men. People aged sixty to seventy-four are 14.5 percent of the population and those seventy-five and over are 6.9 percent of the population. The census reports that 58 percent of people aged sixty to sixty-four had a non-school qualification, referring to educational attainments other than those of primary and secondary school qualifications. Our survey sample is older than that reflected in the census data, likely explaining the lower post-secondary attainment reported by our respondents.

  2. See www.publicadvocate.vic.gov.au/medical-research-procedures.

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Acknowledgements

The authors thank Jen Engel for assistance with data collection.

Funding

This research was supported by the National Health and Medical Research Council via a Dementia Research Team Grant (APP1095078). This research was also supported by infrastructure funding from the Hunter Medical Research Institute.

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  1. Faculty of Law, University of Technology Sydney, PO Box 123, Broadway, Sydney, NSW, 2007, Australia

    Nola Ries

  2. Faculty of Health and Medicine, University of Newcastle, University Drive, Callaghan, NSW, 2308, Australia

    Elise Mansfield & Rob Sanson-Fisher

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  1. Nola Ries
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All authors contributed to the conception and design of the study. NR and EM led data collection and analysis. NR led the drafting of the manuscript; EM and RSF reviewed and provided critical input. All authors have read and approved the final manuscript.

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Correspondence to Nola Ries.

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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. Bioethical Inquiry 16, 415–429 (2019). https://doi.org/10.1007/s11673-019-09929-x

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