Informed consent is a cornerstone of ethical research, but it presents unique challenges in the context of dementia, where cognitive impairments and fluctuating decision-making abilities can complicate the process. To date, much of the research on informed consent has focused on the views of researchers and healthcare professionals. There has been less attention paid to the perspectives of people living with or at risk of dementia, and their carers — a gap that EPND partners, Alzheimer Europe, aim to address.

On 4 February, Alzheimer Europe published a perspectives article in the Frontiers in Dementia journal, shining a spotlight on how people with lived experience of dementia view informed consent for research. The article draws on Alzheimer Europe’s extensive Public Involvement activities, focusing in part on discussions held during a face-to-face meeting on informed consent forms and processes with EPND's Patient Expert Group.

The article identifies both barriers and facilitators to informed consent, with people with dementia and carers highlighting the need for clear, simple language in consent materials. Alongside clarity, they emphasised the importance of respecting individual autonomy and ensuring that the values, preferences, and rights of people with dementia remain central throughout the research process.

The article also addresses emerging ethical challenges in dementia research, such as the use of artificial intelligence and the secondary use of shared data. It highlights the value of involving people with lived experience to ensure informed consent processes remain both inclusive and ethical in the face of rapidly-evolving research approaches.

Download the article: