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The Lived Experience of Creating, Together

David, who lives with dementia, and his wife Rachel, talk about the experience of participating in a co-creative research programme called 'With All.
David is my husband for 12 years. But two years ago he was diagnosed with Alzheimer’s. But David has always had a creative life, I would say. He used to have a theatre and he was a vicar too. But there was a lot of performance in his life. And so we just thought that finding outlets for this creativity would be the best way for us to get over all the bad stuff that’s happening when you are diagnosed. And they just had started recruiting for this project. And so we were very keen, because we thought because there was an experimental thing with music and movement.
In the modern world, for me– I’m not saying for everybody– it’s really quite difficult to get into an atmosphere like this, where there are a variety people who care about the other people, who are not already aunts and uncles or more likely the sons and daughters, and wives and things like that. And people– we– have to do a bit of thinking about what we’re going to do, and make the whole thing hang together. It was actually a bit strange at the beginning, and awkward. Because we didn’t really know what we were expected to do, isn’t it David? Yes, yes, absolutely.
Because then as a performer by nature, David, he always wants to do, I mean, have a bit of a cue about what he is to perform. But then there was no cue much. So we were trying– You loved the time, for instance, when you were asked to direct the music. Conduct. Yes. And then the people came to you afterwards and asked, have you ever directed or conducted? And there was little moments like that, that were– I said, no, never conducted a thing in my life. But you pretended very well. But I’ve seen the way they do it, you know. My aim was to bring music into our lives, because it had kind of vanished a bit.
And actually, David came last time, after the penultimate session, and talked about his violin, and playing violin when he was younger. It’s the first time that he was enthusiastic about– Violins. –buying a new violin! So we went to buy a violin. We brought it last time, and you played. Obviously, it was not like concert kind of thing. But it doesn’t matter. Because in the group you’re not expected to be a– You’re just expect to enjoy yourself. It also gets you away from a very structured place, association, whatever you like to call it. And a lot of stuff these days is very structured. And it’s nice to be with other people.
Overall, it makes us, it’s kind of a blank word, but happier. It’s just kind of boosted us I think as. I said to Julian it’s better than the medicine. It’s all the positive and no side effects.

David, who lives with dementia, and his wife Rachel, talk about their experience of participating in a co-creative research programme called ‘With All’.

They explain:

  • What motivated them both to take part in this project

  • How they both found the experience

  • Some of the positive experiences that arose as a result of the sessions

For many people, letting your guard down enough to immerse yourself in a creative activity can be a daunting experience. It can make some people feel exposed and uncomfortable. Under what circumstances or conditions would you feel comfortable to help create something? Has your enthusiasm for creating changed since receiving a diagnosis of dementia, or do you know somebody who has experienced such a change? Please share your thoughts and experiences in the comments.

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Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives

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