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 programme, engaged with our group members to gather feedback on what needs could be addressed with technology in the home.
We look forward to developing more involvement activities this year. If you’re a UK DRI researcher and would like to find out more about connecting with the Lived Experience Group, or if you are affected by dementia yourself and are interested in getting involved please contact firstname.lastname@example.org