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
Authors | 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 |
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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 |
Year | 01 Jan 2021 |
Journal | Australasian Journal on Ageing |
Journal citation | 41 (2), pp. 309-313 |
Publisher | John Wiley & Sons, Inc. (US) |
ISSN | 1440-6381 |
Digital Object Identifier (DOI) | https://doi.org/10.1111/ajag.13023 |
Web address (URL) | https://onlinelibrary.wiley.com/doi/10.1111/ajag.13023 |
Open access | Published as non-open access |
Research or scholarly | Research |
Page range | 309-313 |
Publisher's version | License All rights reserved File Access Level Controlled |
Output status | Published |
Publication dates | |
Online | 14 Jun 2022 |
Publication process dates | |
Accepted | 14 Oct 2021 |
Deposited | 21 May 2024 |
Additional information | NHMRC National Institute for Dementia Research (NNIDR) |
© 2021 AJA Inc. | |
Place of publication | Australia |
https://acuresearchbank.acu.edu.au/item/908q4/advocating-the-rights-of-people-with-dementia-to-contribute-to-research-considerations-for-researchers-and-ethics-committees
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