The UK Dementia Research Institute exists to improve the lives of those at risk of or living with dementia, and their carers. We believe our research is strengthened by input from people with lived experience of neurodegenerative diseases.
We formed our Lived Experience Group in 2019, made up of people living with different forms of dementia and people who have cared for or are caring for loved ones. Members of the group act as advocates and ambassadors for the institute, helping explain what we do and sharing our outcomes with wider networks, to help build a supportive society. Members also provide patient and public involvement feedback to UK DRI researchers.
To date we have seen many benefits of involvement. This includes valuable input at launch events, for our communications materials and on key selection panels – including appointing our Director Bart De Strooper and selecting our Care Research & Technology Centre.
The Helix Centre, who work with our Care Research & Technology Centre, regularly engage with our group members to gather feedback on what needs could be addressed with technology in the home. The Centre also runs a "Friends of the Centre" scheme for people who wish to get more involved in their specific activities.
We continue to develop more involvement activities that contribute to the vital work of researchers across the UK DRI. If you are affected by dementia yourself and would like to get involved with the work of the Lived Experience Group please contact firstname.lastname@example.org.