Abstract

The DEFIN-YD project (Dementia Experts For Involvement Network for Younger people with Dementia) project aims to (1) raise awareness of YOD (2) make the local communities and people affected by YOD (in the north, midlands and south of England) aware of the existing research into young onset dementia care and (3) create a strong and stable regional public and patient involvement forum network to inform YOD research and policy.

Three one day events across the country will take place in the north, midlands and south of England, which provide a platform for younger people living with dementia to get involved in the design of dementia research activities. Following the event, a national network with three regional hubs, specific for younger people living with dementia, will be created and supported. Members will receive PPI training, and meet on three separate occasions to inform research. A “one year on …” event will take place in Northampton in May 2021 to highlight the great work that the network has achieved and to potentially recruit more PPI members onboard. The project will provide platform for people with YOD to get involved in research, through being experts by experience.