In the disability field, it is increasingly the case that people who use services, rather than professionals, have control over the research process. They plan and undertake research and interpret the findings.
In the ‘dementia world’, DEEP – the UK Network of Dementia Voices – is growing rapidly and now comprises over 80 involvement groups of people with dementia. DEEP provides the potential for a new approach to research delivery.
The aim of this project (October 2018 – February 2023 ) was to develop a new approach to research, or ‘enquiry’, that is led and controlled by people with dementia themselves.
Innovations in Dementia has supported people with dementia to explore how knowledge is acquired and applied in a way that feels relevant to their own lives. People with dementia have been involved in identifying research priorities and, helped by small grants, in planning and undertaking their own research.
Dementia Enquirers has supported over 20 DEEP groups to conduct their own small-scale research projects. Many groups have been involved in research studies carried out by universities. However, this project has given people with dementia a chance to lead and be in control, of their own research – on issues that are important to them.
Training, guidance, support and ideas were available to help groups build their own research skills and expertise. University researchers were also sometimes involved as advisors or had roles in the projects. Small grants were available for groups to get on with their own research projects. These groups were encouraged to share their learning with the rest of the DEEP network. The project explored with people with dementia the lessons that emerged from their work. We are sharing this learning widely.
We are confident that the project can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia.
We are very grateful to The National Lottery Community Fund for funding this ground-breaking new initiative.