Beyond the Signature: Addressing Informed Consent Challenges in Dementia Technology Research CSCW007

Informed consent is essential for ethical research, but applying it in technology research involving people with dementia can be challenging. We conducted interviews with researchers, participants with dementia, and data stewards to explore these challenges and strategies for obtaining consent. Using communication theory, we examined how linear, dynamic, and contextual communication elements influence consent practices. Our findings show that relying too much on one-way information transfer creates problems in conveying information, documenting agreements, monitoring ongoing consent, and improving the consent processes. However, dynamic, context-sensitive strategies, such as paraphrasing information, fostering personal relationships, and designing supportive environments, can turn consent into a collaborative and inclusive process. We offer practical recommendations and reflective questions to improve consent conversations in dementia research and suggest future directions for more dynamic consent materials. By reframing consent as a dynamic and contextual process, we aim to make technology research in sensitive settings more ethical and inclusive.