Advocating the rights of people with dementia to contribute to research: Considerations for researchers and ethics committees

Claire M C O'Connor; Jacki Liddle; Maria O'Reilly; Claudia Meyer; Jade Cartwright; Marita Chisholm; Erin Conway; Elaine Fielding; Amanda Fox; Margaret MacAndrew; Linda Schnitker; Catherine Travers; Karen Watson; Christine While; Kasia Bail

doi:10.1111/ajag.13023

Advocating the rights of people with dementia to contribute to research: Considerations for researchers and ethics committees

Australas J Ageing. 2022 Jun;41(2):309-313. doi: 10.1111/ajag.13023. Epub 2021 Nov 25.

Authors

Claire M C O'Connor^{1

2}, Jacki Liddle³, Maria O'Reilly⁴, Claudia Meyer^{5

6}, Jade Cartwright⁷, Marita Chisholm⁸, Erin Conway⁹, Elaine Fielding¹⁰, Amanda Fox¹⁰, Margaret MacAndrew¹⁰, Linda Schnitker¹¹, Catherine Travers^{3

10}, Karen Watson¹², Christine While¹³, Kasia Bail¹⁴

Affiliations

¹ HammondCare, Centre for Positive Ageing, Sydney, New South Wales, Australia.
² School of Population Health, University of New South Wales, Sydney, New South Wales, Australia.
³ The University of Queensland, Brisbane, Queensland, Australia.
⁴ Central Queensland University, Bundaberg, Queensland, Australia.
⁵ Bolton Clarke Research Institute, Melbourne, Victoria, Australia.
⁶ Rehabilitation, Ageing and Independent Living Research Centre, Monash University, Melbourne, Victoria, Australia.
⁷ Curtin University, Perth, Western Australia, Australia.
⁸ Rural North West Health, Warracknabeal, Victoria, Australia.
⁹ Faculty of Health Sciences, Australian Catholic University, Brisbane, Queensland, Australia.
¹⁰ Queensland University of Technology, Brisbane, Queensland, Australia.
¹¹ Bolton Clarke Research Institute, Brisbane, Queensland, Australia.
¹² The University of Sydney, Sydney, New South Wales, Australia.
¹³ Dementia Training Australia, La Trobe University, Melbourne, Victoria, Australia.
¹⁴ Faculty of Health, University of Canberra, Canberra, Australian Capital Territory, Australia.

PMID: 34821448
DOI: 10.1111/ajag.13023

Abstract

Objective: Research involving people with dementia is vital to appropriately inform policy and practice decisions affecting this population. As dementia-care researchers, we frequently advocate to Human Research Ethics Committees for the right of people with dementia to choose whether to participate in research. This brief report provides some considerations for researchers and ethics committees.

Method: Descriptive summary of principles that argue for inclusion of people with dementia in research studies.

Results: Specifically excluding people living with dementia from research because of perceived cognitive impairment is inappropriate in light of human rights principles and the right to contribute to evidence-based care.

Conclusions: There is a difference between capacity to provide informed consent and ability to provide perspectives that are valid for each individual. Providing the opportunity for a person with dementia to participate in research and offering support to do this is a matter of human rights.

Keywords: dementia; ethics committees; informed consent; research; social participation.

MeSH terms

Cognitive Dysfunction*
Dementia* / diagnosis
Dementia* / psychology
Dementia* / therapy
Ethics Committees, Research
Humans
Informed Consent / psychology
Research Personnel

Abstract

MeSH terms

Grants and funding