Print This PostNavigating the complex ethical landscape of dementia research requires not only expertise but also sensitivity towards the unique challenges posed by this field. Developed by DemComm fellows at the Winter Residential School, the Dementia Research Ethics Resource is a comprehensive guide designed to support researchers in crafting responsible and effective dementia research.
This first-of-its-kind resource emerges from the collective insights and discussions of over 50 research fellows, drawing on extensive consultations and feedback across multiple stages of the research cycle—from idea generation to dissemination. It provides practical solutions to ethical dilemmas such as participant recruitment, consent, data management, and public engagement, ensuring that each research step respects and enhances the dignity of people living with dementia.
Crafted by Dr Elisabeth Grey, Dr Olivia Luijnenburg, Dr Rasa Mikelytė, and Dr Tomasina Oh, and supported by the National Institute of Health and Care Research and the Alzheimer’s Society, this resource offers invaluable guidelines, strategies, and tips to navigate the ethical complexities of dementia research. Whether you are assessing participant capacity, managing sensitive data, or engaging with patient groups, the Dementia Research Ethics Resource is your essential companion, ensuring that your research is ethical, respectful, and impactful.
Explore this resource and elevate your research practices in dementia studies. Join the Dem Comm Fellows in setting new standards in ethical research that truly respects and understands the needs of individuals and communities affected by dementia. For more information and to access the resource, visit DemComm Research Fellows.
Dementia Research Ethics Resource_20240517
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https://doi.org/10.17605/OSF.IO/3KHMD
Dr Sarah Griffiths
This guidance fails to reference the 200+ page report on Ethics for research of people with dementia and fails to include the Gold Standard of Ethics document developed by the award-winning Dementia Enquirers, part of the DEEP Network.
https://www.dementiavoices.org.uk/wp-content/uploads/2020/07/The-DEEP-Ethics-Gold-Standards-for-Dementia-Research.pdf
(Comment edited by Dementia Researcher to ensure feedback is contructive)
Just to flag in defence of the the people that produced this guidance (which is only 8 pages long). It is very sensible, and doesn’t in any way contridict the guidance from Dementia Voices, I feel sure there not referencing that is simply an oversight or a lack of awareness.
Thank you for flagging, we will include this in the next version. This is a ‘living document’ and we ask for continuous constructive feedback and are happy to receive ideas on what to add or change in the current version. As it is a short document, the list of resources is not exhaustive.
Thank you very much for flagging this omission – we have now added a reference to the Gold Standards Framework.
New version updated to include ‘Dementia Enquirers’ guidance – that’s what I call a responsive team.