About the project
People with young onset dementia report that they do not know where to find information on social care/health and wellbeing research, or how to be involved as participants or PPI representatives and co-creators in dementia research. This project therefore aims to address this gap and provide a valuable resource to support both those living with young onset dementia to gain knowledge about social care, well-being, and health research in dementia and how it may be of benefit to them, to provide a greater understanding of what taking part in research means, the value of taking part, and how to get involved.
Engaging People Living with Young Onset Dementia in Research event.
On 28 January 2021, the University of West London delivered a free online event including talks by researchers in the field of young onset dementia highlighting different ways in which people could get involved with research in collaboration with the University of Bradford.
The DEFIN-YD Project aims to share knowledge about young dementia research and to create a younger people with dementia and their families’ public and patient involvement (PPI) network in the North (Bradford), Midlands (Northampton) and South (London) of England.
The aim is to develop ideas for future research in this area and provide a reference group to support researchers developing projects in this field.
The research team is led by Dr Mary O’Malley, Association for Dementia Studies, University of Worcester, Professor Jacqueline Parkes from the University of Northampton and includes researchers from Universities of Northampton, West London (led by Dr Laura Cole) and Bradford.
Clare Mason from the Centre for Applied Dementia Studies, leads the Northern groups and contributes to project management while Jan Oyebode, Professor of Dementia Care, is part of the Steering Committee and oversees CfADS input to the study.
Young Dementia Network are a key collaborator.
This project is funded by the Welcome Foundation.