Wendy Mitchell, 64
Older person
After reading her book, Somebody I Used to Know, I [Natasha Ginnivan] contacted Wendy Mitchell, author and advocate, about possibly collaborating with our interdisciplinary team on the lived experience of ageing and dementia. Wendy graciously accepted my invitation and agreed to co-collaborate with us with a series of interviews on her lived experience of the diagnosis and treatment of her early onset dementia. In particular, she conveyed the disconnect in what clinicians are taught about dementia, and how they respond and treat people living with dementia. Wendy advocates for those living with dementia, and has earned two honorary doctorates in the work she has done to help clinicians better understand the lived experience that goes beyond theory. Through the series of these interviews our team of psychologists and artists were able to create an interactive artwork in virtual reality that embodied the lived experiences of a character living with dementia. In turn, this work attracted an award for 'innovation and impact' and we were able to show that participants who viewed this artwork reported improved states of empathy and less 'emotional distance' to the character in the artwork embodying dementia. This was largely due to the authenticity of experiences expressed in Wendy's interviews for which we thank her.
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Tell me about when you first discovered that you had dementia.
Yes. I mean, that was one of the first incidents. I mean, dementia wasn’t even in my mind at that point because, like so many other people, when I thought of the word “dementia” I thought of the end stages. And you forget that there’s a beginning and a middle stage, and especially for someone of my age. I was very ignorant at that time to how dementia can affect people of my age, [59] but I knew something was wrong.
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That seemed sort of ironic given you were working in health.
Oh yeah, yeah, absolutely. I did think that I was – when I did get the diagnosis that I worked in the right place to get help, but you know that proved not to be the case sadly because they – you know, while they’re very good at looking after the patients they never assume that they could have employees with dementia so that was a very poignant moment of awakening to the lack of understanding and awareness of dementia and the lived experience.
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Do you think it’s improved since that time?
I like to think so. Before I left, I worked with NHS employers to put together a toolkit for anyone coming behind me, but when I looked at it the other day, I noticed that it hasn’t been updated and it hasn’t been – you know, there isn’t a new one, or new version out. So, whether it’s being used or not I really don’t know, which is very sad.
But there’s small pockets of employers that are very supportive, but there’s only a tiny fraction. I think when we’re in that dementia research bubble, you know like yourself, we all ‘get it’ and we forget that our knowledge bubble is so tiny and there’s still this huge bubble around us that has no idea about the lived experience.
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Is it your mission to really educate and inform people, particularly about the lived experience of the challenges of living with dementia?
That’s right, I often say that the academic, the theory and the science are very well-known, even – all the nurses understood the science behind dementia, but not many of them understood the reality and it’s the reality that people can help more with. Nurses in their situation, or the community in their situation, can help so much more if they understand the reality. You know, we obviously must have the [research] excellence of the – you know, people like yourself, the academics, and the science behind it, but there’s so much more to it than that and I remember when I was diagnosed it sticks firmly in my head. I was shocked that the ‘so-called experts’ didn’t know the reality of living with dementia. You know, the consultants couldn’t tell me what to expect apart from, you know, the decline and the basics, but they didn’t understand how our senses are so affected and that was just totally alien to them and that shocked me. It shocked me that they understood the science, but not the reality. Yeah, because the lived experience is the missing link in the whole picture.