Patient and Public Involvement in Dementia Research
Friends of the Care Research and Technology Centre
About the Centre
The Care Research & Technology Centre (CR&T) is one of seven Centres that collectively make up the UK Dementia Research Institute (UK DRI) and was set up in 2019 with the aim of developing new ways to help people live well with dementia. The Centre brings together a diverse team of doctors, engineers, designers and scientists who are working together to advance and transform at-home care, to allow people to live independently, at home, for as long as possible, by identifying problems earlier.
The Helix Centre leads the Human-Centred Design and Patient and Public Involvement workstreams in CR&T, to ensure the needs of people affected by dementia remain at the heart of research. This is critical to ensure that research being translated into health and social care services is accessible, suitable and desirable for people accessing those services.
Although CR&T has always involved people affected by dementia, the Helix Centre launched a new initiative last year, which aims to go one step further, and enable more people affected by dementia to get involved, on their terms.
The new community, Friends of the Care Research & Technology Centre (Friends of CR&T), is designed to be a space for researchers and people affected by dementia to learn from each other and work together to shape the future of dementia research.
For people affected by dementia, the community is designed to enable more people to have their say in the future of dementia care, by enabling flexible involvement. Friends of CR&T particularly aims to acknowledge and address barriers to involvement, such as access needs, including those of people living with dementia, as well as care responsibilities. A key part of the initiative aims to diversify who is involved in the research to ensure the needs of seldom-heard communities are represented and products and services don’t exclude communities further down line.
The new infrastructure also aims to make it easier for researchers to meaningfully involve people affected by dementia throughout their research. By demonstrating the positive impact involvement can have on research (making it more relevant for the real world and therefore with greater potential for impact and adoption further down the line), the hope is that this community can develop and share best practice for involving people affected by dementia in research.
The Friends of CR&T Community was launched on 11 October 2023 with an evening event which invited people from the community and those interested in finding out more to come together, share insights, knowledge and co-create the Community. The event was attended by 58 people affected by dementia, 5 community organisations, and 18 researchers from across CR&T.
Group discussion at the launch event
Group discussion at the launch event
At the event, attendees heard short talks from researchers at the Centre who shared case studies of public involvement impact, participated in lively group discussions on key issues for research to address, and shared their thoughts on future directions for the initiative. There was also the opportunity for those attending to speak with representatives from different community group organisations as well as try out some of the technological research being shared by researchers from the Centre.
It was fantastic to see so many people from all over the UK interested in the work of the UK DRI’s Care Research & Technology Centre. It was even better that we had the majority sign up to be a Friend of CR&T to shape the work the Centre undertakes, making people the heart of what we do."
Many attending the event shared how the event had given them hope for the future – in terms of both the encouraging developments being made within dementia care research, as well as feeling as though these developments will be designed to meet the needs of those affected.
It was epic!! Gives me hope for the future. Thank you"
The event left me full of hope, thank you"
Very informative and encouraging for the future"
For an evening, all titles were put away and we listened... it was truly wonderful"
Similar impact was also felt across our Centre. Success Fabusoro, one of CR&T’s Research Technicians shared “For an evening, all titles were put away and we listened...it was truly wonderful”. Likewise, Danielle our Centre Manager shared her delight that so many people from around the UK had attended and consequently signed up to be a Friend, ensuring “people remain at the heart of what we do”.
All the insights and ideas discussed at the event have been shared with the wider Centre, as a resource for researchers to consider how our current and future research aligns with public wants and needs.
Presentation at the launch event
Presentation at the launch event
Networking at the launch event
Networking at the launch event
Attendees listening to the discussion
Attendees listening to the discussion
I've been overwhelmed by the response and engagement from this community. Many people shared that the event had given them hope – which beautifully symbolises what I hope this community can become; a positive space to transform how we research – where researchers and people affected by dementia can learn from each other and work in partnership to help improve the lives of those living with, and affected by, dementia. I hope the biggest impact from this community is yet to come”
The Friends of CR&T community now has over 80 people affected by dementia involved. Since the Launch event, the group have made significant contributions to the InSleep46 public involvement workshops, and there are over 4 different projects from across the Centre which will involve the group over the coming months.
Alongside the Friends of CR&T community, a dedicated Public Involvement Steering Group has now been appointed to help shape the Centre's research at a more strategic level. These appointments will further transform how the Centre works in partnership with people affected by dementia.
The team: Sophie Horrocks, Matthew Harrison
- Find out more about the Helix Centre
- Return to the IGHI Annual Report 2023
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