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The Lived Experience: Kate and John

Kate, who is the wife and carer of John, provides an insight into how the arts continue to impact on their journey dementia journey.
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I’m married to John for about 30 years. He was diagnosed with Alzheimer’s about nine years ago. And he’s been pretty steady, I guess, at home really for the last seven years. In the last two years, there’s been marked changes in his capacity, which has meant that he’s needed a lot more support to the extent now that he’s needing to be in a residential care because the night times and so on are also times when he needs support. Music has been the golden thread throughout our lives. Because in a way, it’s how we came to get to know each other– was through music. And playing together has been a very significant energizer and delight.
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For John, as a professional musician, it’s been his real passion, right from when he was seven years old and starting playing the piano. And for me, I guess for me, it’s much more of a listener of music. And then getting together with John, he was saying, “Well, I think you can play. Why aren’t you?” So I got into percussion as my way of not being just a listener and a participant in music. I guess the other arts– theatre and so on– are much more important to me than they are to John. And paintings and going to galleries– we do that. And interestingly, John has got more interested in that as he’s got more into his dementia.
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And he’s a great lover of Hockney. We got one of these massive books of Hockney’s paintings, which he really enjoys looking at. So I think his tastes in art have really changed, actually, over the period of his illness. So the music, I guess, is absolutely central. Because I think what it does is helps in calming, in enjoying life, in moving from a position of feeling uncomfortable, feeling disgruntled about something, or upset. If there are particular tracks that you can find, they can really enhance John’s capacity to move into something different. And so we use music to help John to go to sleep, for example– it helps me to go to sleep as well– and for getting up in the morning.
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And I find going to concerts– we do go to relax concerts particularly, because John loves joining in. The burgeoning of those, like Song Haven and some of the other ones at the Wigmore Hall which are specifically for people who are wanting to join in, have been lifelines, really. And John has enjoyed classical music in a way he didn’t when he was much younger. And so there’s a renewed widening of his interests in music. I’ve noticed when we’ve been to concerts, when we’ve come home, for example, John would go straight to the piano. And the last time we went to something, it was as if his whole brain and memory and capacity was enlivened so that he could sit
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at the piano at half past 9:00 at night after listening to other people playing and him singing, playing in a way that would probably be more characteristic of six months ago. So it was as if he’d been rewired. The music in our own lives in terms of our relationship I think has really enlivened our relationship in a way that I can see that–
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we can share something in the moment. And I can feel incredibly proud of being married to this guy. You know he’s a cool guy! He may have dementia, but he’s got this amazing capacity to give a performance. And that makes me feel very happy to be in our relationship together.

In this account Kate, who is the wife and carer of John (who lives with dementia) provides an insight into how the arts continue to impact on their journey through the diagnosis.

In addition to the powerful in-the-moment experiences that music gives both her and John, Kate has also found that Pam Schweitzer’s Remembering Yesterday Caring Today Europe-wide reminiscence project has been hugely beneficial to their dementia journey together.

CREDITS We would like to extend a special thank you to the following individuals and organisations for providing supplementary footage and images for this video: * James Berry/ Wigmore Hall * Kate for granting permission to use footage from the biographical mini-documentary about John, produced by My Life Films.
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Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives

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