“We have the expertise, but you provide the scaffolding. We have the key, you can help us to open the box.“
Research is the creation of new knowledge – or the use of existing knowledge in a new and creative way – to generate new and ideas and understanding. Dementia Enquirers is an ambitious and novel programme of work which has tested out what it means for people with dementia to be those ‘knowledge creators’. It celebrates the curiosity of people with dementia, amplifying their voices and recognising their unique perspectives.
Dementia Enquirers was a 4.5 year programme of work led by Innovations in Dementia, a national community interest company that works alongside people with dementia in a range of innovative projects. At Innovations in Dementia we promote a positive but realistic view of dementia, demonstrating that, although dementia is lie changing it does not have to be life ending. We support people with dementia to live with hope and keep control of their lives.
Innovations in Dementia runs the well known DEEP network – a UK wide network of involvement groups of people with dementia – and it is 26 local DEEP groups that have spearheaded a challenge to traditional research paradigms by positioning individuals with dementia as primary investigators rather than subjects. This shift, based on values of inclusivity, respect and genuine collaboration, builds on existing research involvement practices to put people with dementia firmly in the driving seat of research.
Dementia Enquirers has been about increasing the skills and knowledge of people with dementia to lead their own research. Their lived experience puts them in a very good position to say what dementia research should be about and how it should be carried out. What sets Dementia Enquirers apart is its focus on topics that truly matter to people with dementia. From exploring the impact of music on memory, to exploring interactions with dementia health systems and to understanding the experiences of daily life with dementia, the research questions arise organically based on the things that are important to people with dementia.
At the heart of Dementia Enquirers has been a vibrant community of people with dementia, facilitators and supporters. This network has provided the necessary infrastructure for the research projects, offering training, resources, mentoring, scaffolding and a space for sharing ideas. Most people started knowing very little about the dementia research world but they grew in knowledge and confidence throughout the Dementia Enquirers programme, astounded at what they achieved.
Dementia Enquirers is more than a project; it’s a movement that calls on all of us to adopt, test and further develop a Dementia Enquirers way of working. You can read more about the Dementia Enquirers programme in “People with dementia at the heart of research: co-producing research through the Dementia Enquirers model” (Litherland and Hare, 2024) and published by Jessica Kingsley Publishers. To find out more about Innovations in Dementia visits www.myid.org.uk and the legacy of the Dementia Enquirers programme is contained here www.dementiaenquirers.org.uk