In dementia research, obtaining informed consent presents unique challenges, in part due to participants' cognitive impairments and fluctuating decision-making capacities. Much of the literature on this important topic has centred on the perspectives of researchers and healthcare professionals, with less focus on individuals with lived experience of dementia (people living with or at risk of dementia; and their carers or supporters).
On 4 February, Alzheimer Europe published a perspectives article in the Frontiers in Dementia journal, addressing this gap by highlighting the views of people with dementia and carers regarding informed consent, drawn from its Public Involvement activities. Led by Ana Diaz (Public Involvement Lead) this article builds upon previous consultations with the European Working Group of People with Dementia (EWGPWD), as well as discussions from a face-to-face meeting about informed consent forms and processes for the ADIS and EPND projects. The EWGPWD was established by Alzheimer Europe in 2012, and is currently composed of 14 people with dementia from different European countries and with different types of dementia, nominated by a national Alzheimer Association for a term of office of 3 years.
The article highlights several barriers and facilitators in the informed consent process. People with lived experience of dementia underlined the necessity for consent materials to be understandable, advocating for clear and straightforward language. Beyond clarity, the discussions underscored the importance of respect and autonomy, ensuring that the values and interests of individuals with dementia remain central throughout the research process. The paper also touches upon emerging challenges in dementia research, such as the ethical considerations surrounding artificial intelligence and data sharing (or the secondary use of data). The authors argue that continuous involvement of people with lived experience is crucial in shaping consent practices to navigate these challenges.
Read the open access article: https://www.frontiersin.org/journals/dementia/articles/10.3389/frdem.2025.1536762/full
Alzheimer Europe perspective in Frontiers in Dementia addresses informed consent in dementia research
04/02/2025