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PERSPECTIVE article
Front. Dement.
Sec. Dementia Care
Volume 4 - 2025 |
doi: 10.3389/frdem.2025.1536762
This article is part of the Research Topic Methods of Engagement of Dementia Care Users in Research and Practice Development View all 9 articles
Informed Consent in dementia research: how Public Involvement can contribute to addressing "old" and "new" challenges
Provisionally accepted- Alzheimer Europe, Luxembourg, Luxembourg
Informed consent is a critical ethical requirement in research, ensuring the protection of participants' rights and promoting their well-being and autonomy. However, in dementia research, this process becomes particularly complex due to cognitive impairments and fluctuating capacity. While substantial work has been done to address these challenges, much of the literature on informed consent in dementia research has been shaped by the perspectives of researchers and healthcare professionals, with less focus on those with lived experience. This paper provides an overview of the perspectives of people with dementia and their carers resulting from Public Involvement activities organised by Alzheimer Europe. It builds on Alzheimer Europe’s previous work with the European Working Group of People with Dementia and draws on discussions held during a face-to-face meeting about Participant Informed Consent forms and processes used in two specific European projects. We highlight views and key concerns raised by people with lived experience regarding the informed consent process, including barriers and facilitators. In addition to ensuring understandability, the discussions emphasised the importance of promoting respect and autonomy, ensuring that the values and interests of people with lived experience remain central throughout the research process.This paper contributes to the ongoing dialogue on improving informed consent practices in dementia research, highlighting the need for continuous involvement and the inclusion of people with lived experience in shaping consent practices to address both old and emerging challenges (i.e. new types of research such as artificial intelligence and data sharing/re-use) in dementia research.
Keywords: Public involvement, Informed Consent, Research, Dementia, Lived experience
Received: 29 Nov 2024; Accepted: 10 Jan 2025.
Copyright: © 2025 Diaz-Ponce, Birck, Bradshaw, Georges, Lamirel, Moradi-Bachiller and Gove. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence:
Ana Diaz-Ponce, Alzheimer Europe, Luxembourg, Luxembourg
Dianne Gove, Alzheimer Europe, Luxembourg, Luxembourg
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