One of our key values at UK DRI is to be welcoming – this means our doors are open so we can build connections with researchers and partners globally, learn from people affected by dementia, engage with the public more widely and connect with politicians to keep dementia top of the agenda.

Learning from people with lived experience of dementia

We exist 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 feedback to UK DRI scientists on their research into dementia.

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 founding Institute Director Bart De Strooper and joining the selection panel for our Care Research & Technology Centre. Involving people living with dementia is essential for the human-centred research taking place at this Centre.

See an example below demonstrating how engagement with people affected by dementia had a significant impact on UK DRI research aim to develop brain stimulation technology for Alzheimer's disease.

Engaging the public in our mission

Our funding comes from generous donors and taxpayer’s money, so it’s very important to us to demonstrate our successes and the impact this is making. We want to be transparent, build trust and ultimately for the public to be proud of their national dementia research institute. We do this imperative engagement with the public through a range of channels, including news media, social media, talks and events. Check out our virtual lab tour of the UK DRI at Edinburgh!


Working with policymakers to keep dementia a priority

Dementia is a health crisis with enormous human, societal and economic costs. We work with policymakers to ensure they understand the scale of the challenge we face, and to help deliver the united response dementia demands. We engage with politicians from all parties and all nations of the UK to raise awareness of the issues facing people with dementia, and how best to support the research giving much-needed hope. Working directly with Government, we seek to build a thriving dementia research environment in the UK and beyond. This includes giving evidence on the impacts of Covid-19 on people with dementia, as well as the funding needs of dementia research.


For more information on our engagement activities, please contact Lucy Wilson