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Dementia Enquirers look at what happens when people with dementia are in the “driving seat” of research

Monday 09 November 2020

Is it possible for people with dementia to lead their own research – on topics that they choose? Can people with dementia assess research proposals – using principles which they themselves draw up? And what does - or could - it mean to people with dementia to be in the “driving seat” of research? The Dementia Enquirers programme - funded by the National Lottery Community Fund and hosted by Innovations in Dementia,a small UK-wide not-for-profit - seeks to answer these questions. It is led by the Pioneers - six people all living with dementia. In summer 2019, the Pioneers awarded 10 small grants to groups in the DEEP network. They recorded decisions on an expanded score sheet – using whatever worked best for them, including scores (1-5), or drawings (L - J) or words they came up with that mapped onto the scores. You can view a film of the Pioneers (and some advisors) reflecting on the grant making process.

The motivation for many groups who applied was to explore issues that are important to them and also to learn some new skills as a group. The successful projects covered a whole range of topics including: the benefits of Amazon’s Echo (Alexa); the impact of people with dementia educating professionals; the emotional and practical experiences of stopping driving; and what transport systems can do to help people live independently with dementia. These projects are owned by DEEP groups and led by members with dementia. Mentors from the world of research have been available to provide advice and support. But importantly “they will be coming into our world rather than us going into theirs”. The pandemic has delayed some of the projects, but some have already produced their reports.

The programme has done much more than simply fund small projects. We have worked hard to co-produce an accessible guide to carrying out research. The Pioneers have also hosted a seminar in partnership with the London School of Hygiene and Tropical Medicine, which explored what people with dementia can learn from other disability groups – and vice versa. There has also been a lot of work around ethical processes – which have often been perceived as daunting, inaccessible and time-consuming. This has resulted in the new DEEP-Ethics Gold Standards, which are now being tested with the next cohort of Dementia Enquirers project applications.

None of this could have happened without the very generous and enthusiastic support of many allies – academics, funders and disability activists. We hope that the programme can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia. The Pioneers have found it tiring but very rewarding to be leading this process – you can hear some of their reflections in this podcast. As one Pioneer summed up: “We’re on a journey. We don’t know where we’re going, but we’re going together”