Whitman L (2023) Portrait of a researcher. Journal of Dementia Care 31(5)19-20
Teresa (Dory) Davies was diagnosed with dementia 11 years ago and is a Dementia Pioneer, one of a group of people living with dementia leading the Dementia Enquirers programme She told Lucy Whitman how dementia has ‘given me wings!’
The Dementia Pioneers are a group of people living with dementia who were invited by Innovations in Dementia to lead their Dementia Enquirers programme. The Dementia Pioneers worked together, with support from experienced academic researchers, to develop a new research methodology which puts people with dementia “in the driving seat” of dementia research: choosing the topic, the research question and the methods. I was 59 when I got my diagnosis. But there was no support. They just suggest you go home and get your power of attorney sorted. They don’t hand you any hope. And I thought – I’ve overcome an abusive marriage – stayed positive through that; and then I’d had a car accident when I was 45, and they said I might never walk again. I was on the pavement, and a car hit me at 80 miles an hour. I broke my neck in 4 places and my leg was smashed. I had a head injury, and they say that’s probably what brought on my dementia. It took me three years to get out of neck braces. But I stayed positive. But when I got the diagnosis of dementia I thought – I can’t fight this one. They gave me no hope, and said I had five to eight years life expectancy. It wasn’t until I got introduced to the DEEP network that I started meeting people in the same boat as me, and they helped give me confidence. I started public speaking then, because I realised it’s not the end, when you get a diagnosis. You can still have a life. I did a talk somewhere, and a few months later I got a letter, that said, ‘Dear Teresa, I heard your talk. I was living with my mother who had dementia, and we were always arguing, but after listening to your talk, I went home and interacted with my mother and went along with her reality. Thank you, because you gave me my mother back. In the last six months of her life she was happy, and relaxed.’ And do you know, I thought, ‘If I can help one person…’ That’s why we do it. All of us who go out there and challenge things. When I was invited to join the Dementia Pioneers. I must admit, the first meeting that I went to, I thought, ‘I don’t think this is for me.’ Because it seemed very academic, and I didn’t think I was up for it. I left school at fifteen with no qualifications. I wasn’t even put in for any exams, because you had to be in the top set to sit any GCSE’s. But I thought, “See how it goes.” I went to other meetings, and I found it could be for me. They gave me the support, and everything was explained. And once I understood what was expected, I found that I could understand what was being asked, and had the confidence to give my point of view. Because I never had that. Because of my abusive marriage, I was made to feel stupid and of no consequence. Innovations in Dementia and the DEEP network have really made me feel valued. Plus the other Pioneers as well, people living with dementia. The group were very supportive and we would talk each project through, and work it all out between us. I do talks at Bangor University for the second and third year and the Masters student nurses and doctors. And the researchers at Bangor, they ask me to help a lot with things they do. I took some of the Dementia Enquirers packs for them and they were very impressed. When we won the Dementia Heroes award for our pack, and for the work we’ve done, I just felt so proud. Proud of everyone that had been involved, because we will change things. On the pack, it says “Teresa Davies, Researcher”. I was asked once, what was my happiest decade, and I said, “My sixties.” And they said, “But that’s when you got your diagnosis of dementia!” I says, “Yeah, and I’m happier now than I’ve ever been. It has changed my life for the better.” Before I had dementia, I’d never travelled anywhere. I’ve met all these wonderful people from all walks of life. I’d never have met them otherwise. It’s given me wings! Meet the Dementia Pioneers: https://www.youtube.com/watch?v=b0YOgiGZjZw&list=PLYEHjkaV2Fx0_V-ty6T43Gxh3EuxG8RTC Find out more about Dementia Enquirers: https://dementiaenquirers.org.uk https://www.alzheimers.org.uk/dementia-professionals/conferences-and-events/dementia-hero-awards
Lucy Whitman is a writer and editor. Lucy’s anthology of personal accounts by people living with dementia, People with dementia speak out, is published by Jessica Kingsley Publishers