Ethnography of dementia-friendly involvement : an ongoing research

The Centre for Applied Dementia Studies was very pleased to have Simon Lemaire from The Universite de Namur (Belgium) visiting us for three months. Simon tells us about his research and his time here at Bradford.

Dementia-friendliness is a concept that thrives in England and start to develop in other countries such as Belgium or France. Coming from Belgium, you can only be impressed by the big amount of dementia-friendly projects or groups. Indeed, projects like the DEEP project gather more than a hundred groups of people living with dementia or carers and tend to offer alternatives solutions and representations of dementia than the biomedical world. Their goal is indeed to show that dementia is not as grim as depicted and that they have experiences and knowledge to share in order to develop good practices. In French speaking Belgium, only one association offers a similar project and gathers only two groups of people living with dementia. I have been following one of that group for 3 years regarding my PhD study in sociology.

My research focuses on the democratic processes around involvement of people with dementia and their families in decisions about dementia care/policy. The project has a special focus on the way people with dementia and their supporters are included in debates, forums, associations, meetings, and political processes, and how their voices are heard from a political participative perspective. In order to do so, I am following groups involving people with dementia in order to produce a dementia voice. I offer an ethnographic analysis of those groups in order to understand how is the inclusion concretely realized. We could say it is an ethnographic analysis of dementia-friendly involvement.

From May 2019 until August 2019, I had the chance to visit the Centre for Applied Dementia Studies (picture below) and to join the Angela project. During those three months, I had the opportunity to meet and follow various DEEP groups during their activities. I have visited groups in Bradford, Wigan, York, Oxford, and Doncaster, most of them several times. I also attended research meetings with Experts by Experience and followed three courses given by people with dementia in York. Similarly, I was invited to the Manchester United stadium with a group from Wigan in order to evaluate if the reminiscence experience they were offering was indeed dementia-friendly.

In addition to the Dementia voices movements, England has also an historic regarding inclusive researches processes, known as PPI (patient and public involvement). I also had the opportunity to conduct six interviews with members of the PPI forum regarding the Angela Project. By doing this, I was able to review the PPI process as well as offer a modest analysis of the different PPI process aims. Involvement in research was depicted as an epistemic gain (a gain in knowledge), a political gain (as a social innovation) and a personal gain (as a source of resilience for the people involved).

All that information, and the good help of my kind hosts, will help in the making of my ongoing doctoral research in sociology. Indeed, I will continue to meet groups in Belgium and I have recently met a new group in Rennes, in France. I hope that this research will help to understand both participative processes and dementia-friendly projects, resulting hopefully in a better inclusion for people living with dementia, in order for them to help building the world we will be living together.



Simon Lemaire

Twitter: @lemairesimon1