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

Journal article


O’Connor, Claire M. C., Liddle, Jacki, O’Reilly, Maria, Meyer, Claudia, Cartwright, Jade, Chisholm, Marita, Conway, Erin Renee, Fielding, Elaine, Fox, A., MacAndrew, Margaret, Schnitker, Linda, Travers, Catherine, Watson, Karen, While, Christine and Bail, Kasia. (2021). Advocating the rights of people with dementia to contribute to research : Considerations for researchers and ethics committees. Australasian Journal on Ageing. 41(2), pp. 309-313. https://doi.org/10.1111/ajag.13023
AuthorsO’Connor, Claire M. C., Liddle, Jacki, O’Reilly, Maria, Meyer, Claudia, Cartwright, Jade, Chisholm, Marita, Conway, Erin Renee, Fielding, Elaine, Fox, A., MacAndrew, Margaret, Schnitker, Linda, Travers, Catherine, Watson, Karen, While, Christine and Bail, Kasia
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.

Keywordsdementia; ethics committees; informed consent; research; social participation
Year01 Jan 2021
JournalAustralasian Journal on Ageing
Journal citation41 (2), pp. 309-313
PublisherJohn Wiley & Sons, Inc. (US)
ISSN1440-6381
Digital Object Identifier (DOI)https://doi.org/10.1111/ajag.13023
Web address (URL)https://onlinelibrary.wiley.com/doi/10.1111/ajag.13023
Open accessPublished as non-open access
Research or scholarlyResearch
Page range309-313
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online14 Jun 2022
Publication process dates
Accepted14 Oct 2021
Deposited21 May 2024
Additional information

NHMRC National Institute for Dementia Research (NNIDR)
Dementia Centre for Research Collaboration (DCRC)
Capacity Building in Care Research (CBCR) Fellowship group (2019–2021)

© 2021 AJA Inc.

Place of publicationAustralia
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