Day 1: Tuesday, 13 September


How can we break methodological boundaries to enable and empower those living with dementia to be research leaders?

Session convener: Katey Warran, The University of Edinburgh

Join us for a facilitated discussion on participatory approaches in dementia research with interdisciplinary panel members Dr Katey Warran (University of Edinburgh), Martin Robertson (Lived Experience Researcher), Dr Rosalie Ashworth (Neuroprogressive and Dementia Network), and Dr Laura Wright (University of Edinburgh). There is growing interest in research that employs participatory methodologies within health and social science research. These approaches place coproduction and creativity at the heart of research design, delivery, and knowledge mobilisation, embedding lived experience and expertise at every stage. However, there are still areas of research within these fields that prioritise top-down approaches within restrictive medical models that may exclude certain populations. In particular, there are limited projects that enable those with dementia to be coresearchers. Having a dementia diagnosis may result in changes to experiences of self-identity, whereby many have to adapt their lives to living with the condition. This often entails stepping away from aspects of life that involve decision-making, due to the false assumption that those with dementia are unable to engage in leadership roles. However, many people living with dementia are capable of contributing to and leading research activities and adding valuable expertise to research teams. Research engagement can also act as an important aspect of quality of life that can provide support for those with dementia. This provocation panel seeks to challenge and unpack the false assumption that those with dementia cannot be research leaders. It will be a forum to discuss how to break down existing academic structures that may be barriers to those with dementia being coresearchers, and to engage in collective activism in relation to inclusivity and equity in dementia health and social science research. Please bring coloured pens and paper to engage creatively with the session!