Sharing the lived experience of dementia in Extra Care

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Posted 16 May 2024

Sharing the lived experience of dementia in Extra Care

Christine, a resident at one of Housing 21’s Extra Care schemes, has always been someone who strives to make a difference for other people.

She volunteered as a Samaritan for 15 years, answering calls and messages from people in crisis, and more recently has dedicated time to contributing to a national research project called DemECH.

Led by the University of Worcester, Christine was invited to sit on the project’s Advisory Group  alongside Bill, another Housing  21 resident, meeting virtually with housing and care providers, as well as commissioners and academics to discuss how different models of Extra Care housing can support people with dementia.

Despite more than a fifth of people living in Extra Care being diagnosed with dementia, little is known about the impact Extra Care can have. For this particular project, a key priority for the researchers was ensuring that the voices of people living with dementia were at the forefront.

For Christine, this was an opportunity she was more than happy to seize. She said: “Throughout the project, I’ve talked about my involvement feeling like my ‘raison d’être’! Everyone was always willing to listen, and it was great to support my neighbour, Bill, who sat on the group too.

“When Donna (a Community Development Officer at Housing 21) first told me about the project and explained that she was also going to be supporting it, I knew I had to do it.

“During my time at Housing 21’s scheme, I’ve been grateful for the support Donna has given me and I have always felt we work well together. If she was showing her support and getting involved with the project, I knew it would be something worth my time too.

“Contributing to the discussions on a video call was a first for both Bill and me. Donna helped us get set up and we focused on sharing our thoughts. My voice felt very important during those meetings, and I always appreciated them stopping to ask how we felt about anything they were discussing.

“Since being diagnosed, this project is the first time I’ve ever been asked to talk about my experience of living with dementia. I feel grateful that I got to do it knowing that I’m contributing to something bigger.”

For 18 months, Christine’s role on the Advisory Group was centred around driving the research forward, as well as scrutinising and contributing to the analysis, before launching the findings at the Houses of Parliament.

From an infographic outlining the key benefits, challenges and solutions to tailored booklets created for social commissioners, Extra Care providers and people and families affected by dementia, the research’s findings have resulted in a hub of resources that demonstrate how Extra Care housing can help people to live well with dementia.

“I’ve never been to Westminster and to say my first-time visiting was getting to go to the Houses of Parliament to meet MPs and Lords to talk about a project I’d been involved with, was truly special,” added Christine.

“Seeing everything come together and for everyone to see what we’d created, was like watching a flower bloom. Everything we’d worked on had come to fruition and now we could share it with the rest of the world for others to appreciate and inspire action.”

Since launching the findings, DemECH has also created three videos to complement the booklets, which feature interviews with residents, care workers and researchers undertaken as part of the project. Watch the videos and read more about the project on DemECH’s blog.

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