Dementia enquirers: pioneering approaches to dementia research in UK

Abstract

Length of paperleading research? We share the perspectives of people with dementia about these questions, building on previous research (Scottish Dementia Working Group 2014;Stevenson and Taylor 2019). Following the principle of "Nothing about us, without us", the paper features the contributions of six authors with dementia, supported by a seventh author, a disability studies academic who has not been diagnosed with dementia. The authors are all Dementia Pioneers, who are the group helping to shape the Dementia Enquirers programme. This paper describes how the Dementia Pioneers work together nationally. We talk about how people with dementia have been excluded from research.We describe the local research projects which have been funded under the Dementia Enquirers programme, before discussing new forms of ethical governance. Finally, we discuss the implications of this approach to dementia research.Are the Dementia Pioneers typical of people with dementia? We are a group of white British people, who come from a range of occupational backgrounds, mainly professional, and who were diagnosed with dementia between three and six years ago. Because we have been involved in the Dementia Engagement and Empowerment network (DEEP), we have become activists for our wider community. Teresa is a retired landscape gardener, diagnosed with Alzheimer's when 59. Wendy was diagnosed with early onset Alzheimer's in 2014. She took early retirement from her work in the NHS to enjoy life "while I'm still me". She writes a popular blog. Mhari describes herself as a mother, a wife, a friend, an advocate for Dementia Inclusive Churches, and as someone who likes dancing, riding her tandem, and meeting colleagues on Zoom. George is a retired teacher and accountant, diagnosed with mixed dementia in 2014. He has become an activist for better dementia care, and, recently, a dementia craftivist. Agnes was trained as a Queen Alexandra Army Nurse. When she was diagnosed with Alzheimer's in 2006, she became a dementia activist. Howard was an Auxiliary Nurse in the NHS until his diagnosis of Alzheimer's and Frontal Temporal Dementia in 2017, and is now a dementia activist.The experience of the DEEP Network and the Dementia Enquirers research programme has been transformative. Mhari explained: "It's the only place that somebody listened. Very often, people can treat you like a child, as if you can't do anything at all. We are

Participatory Research in Disability in Low- and Middle-Income Countries: What have we Learnt and what Should we Do?

“…People with disabilities were able to advise on which data collection tools and methods are most acceptable and relevant. Furthermore, data collected by people with disabilities is possible and may be of higher quality, as research participants appeared more willing to talk more openly and in-depth with disabled researchers as we and others have found (Bhatta et al 2018;Davies et al 2021;Pinfold et al 2015;Wilbur et al 2019), although this needs further exploration (Holland et al 2008). People with disabilities could also participate in the dissemination of results, particularly to other community members (ICED 2020).…”

“…Their views on the research process were important and insightful, but they would have lacked the academic skills to write the paper independently. Similarly, we have facilitated people with dementia to write a paper on research, which was co-authored by an academically skilled researcher without dementia (Davies et al 2021).…”

“…Another mechanism to ensure participation in establishing the research question is to include disabled members on the steering group, as we did in our study in the Gaza Strip. Both the DRILL programme and the Dementia Enquirers programme are other good examples (Berry et al 2020;Davies et al 2021;DRILL 2020). It is important that this role is not tokenistic, and so the steering group members must be given the relevant information to be able to make informed contributions.…”

“…The authors concluded that their research was higher quality and more programme/policy relevant as a result of the integration of lived experience and local expertise, reduced the power hierarchy between researchers and other stakeholders, and established more transparent processes for reaching consensus (Pinfold et al 2015). Another example is the Dementia Enquirers project, where British people with dementia have been involved in designing and carrying out small-scale research on dementia (Berry et al 2020;Davies et al 2021). These projects have been designed in accessible ways throughout the research cycle and so end up being about what matters to people with dementia.…”

Recognising lived experience is essential to empowering disabled patients

“…I learnt the most important lessons about daily life from other people who shared my condition, such as how to manage catheterization or how to put my wheelchair into a car. I have also seen this in groups I research with: groups of people with dementia, such as the DEEP (Dementia Engagement and Empowerment Project) network,6 and people with disabilities in Africa 7. People feel they still have something to contribute despite a diagnosis that at first felt like a death sentence.…”