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

  • Nola RiesEmail author
  • Elise Mansfield
  • Rob Sanson-Fisher
Original Research

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.

Key words

Dementia Cognitive impairment Research Capacity to consent Ethics Law Advance research directive 

Notes

Acknowledgements

The authors thank Jen Engel for assistance with data collection.

Author’s Contribution

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.

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.

Compliance with ethical standards

Conflict of interest

The authors have no conflicts of interest to declare.

Supplementary material

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ESM 1 (DOCX 41 kb)
11673_2019_9929_MOESM2_ESM.docx (27 kb)
ESM 2 (DOCX 26 kb)

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Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2019

Authors and Affiliations

  1. 1.Faculty of LawUniversity of Technology SydneySydneyAustralia
  2. 2.Faculty of Health and MedicineUniversity of NewcastleCallaghanAustralia

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