How Alzheimer’s Society used experiences of people with dementia and their carers to support a UK government initiative to prioritise dementia research

2012 Conference

Abstract: This presentation and poster will showcase the ways in which people with experience of dementia have supported a UK government initiative to prioritise and improve dementia research. Delegates will learn about innovative techniques to bring together personal experiences of dementia alongside the scientific expertise of dementia researchers. This will provide discussion on the important role that medical research charities can play together with the Department of Health and the research community. We will also share methods to facilitate the involvement of patient and carer experiences within large workshop events.

Alzheimer’s Society’s Research Network of over 220 carers and people with dementia provided pivotal support to the National Dementia Research Summit in 2009, a Ministerial advisory group and the National Institute of Health Research’s ‘Dementia Themed Call’. This included an innovative workshop that brought together 30 researchers and 40 Research Network volunteers. The workshop matched Research Network volunteers’ experiences with the topics of the researchers’ projects that were in development. Speed networking and focused discussions were facilitated to allow researchers to discuss their proposals with those who have relevant personal experience. This led to many offers of support from Alzheimer’s Society to facilitate public and patient involvement, including 13 applications with lay co-applicants.