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The Lived Experience: Keith & Rose

Rose and Keith describe how the arts have taken on an increasingly bigger role in their lives since Keith's diagnosis of primary progressive aphasia.
So when you come here today- Yeah. And you do what you were doing with Charlie. Yeah. And talking about things. Or when you come and you’re dancing. Yeah. How do you feel? How do you feel? Super. Right. Yeah. Yeah. Yeah. Feels good. That’s what I’d said. Can you say a little bit more about that? What feels super? What’s super? Yeah, say a little bit more. I want to get into– any things that I want that I want to be able to do. For me it’s been helpful because I feel like I’ve got to know people a bit.
It’s been nice to get to know some of the staff involved with all the different projects, and also just the fact it brings people together who are also in a not dissimilar circumstances. So whether it’s other people in a caring role or, you know, people who are living with dementia. Some with similar types of dementia to Keith, and some with other varied dementias. But everybody’s sort of, I suppose, in that bag of living with rare dementias and often early onset situations. So it’s just that sense of being part of. And it’s less and– it reduces isolation of it, I guess.
And then for Keith, one of the things I see is that it’s just been very difficult just getting– just having to live with dementia. See things changing. And part of that thing has been often quite a sense of both helplessness, sometimes, and also not feeling useful. And feeling rather useless sometimes. And sometimes you’ve said that, that you feel useless. And so I think a number of the different things that he’s been involved with here have just really contributed to him feeling useful. Does that make sense? Yes. Is part of what you get out of coming here? And I think people wanting to listen to you? And people who understand a bit more about what you’re dealing with?
So that and they understand it’s important to take a bit more time. You know that so much of the just hurly-burly of life, even with friends and family who care about you, I think, it’s often just hard for them to really get to grips with what does problems with language mean. Oh, right, you’re having trouble finding words. Oh, no, but you’re not understanding– so just that whole people getting their heads around what’s involved, I think, is hard. How things have changed. Yeah. I feel, like probably for you too. But we’ve participated more in things within the arts. So we go to the theatre less. Yeah. Than we used to. We do still get to the cinema quite regularly. Yeah.
Quite close by, so it’s quite easy to do. But we probably don’t get to theatre as much. But we participate in more, so I’ve done more skipping and dancing around a room in the last three years than I would have done in the previous– [LAUGHTER] So that’s been great fun. Well done! We’ve done more– you know! Just being. Going with the flow. And you too. Yes. And I think you too. You have too. So that’s interesting, isn’t it? Sort of, somehow that opportunity has presented itself in a way. And so we’ve been lucky enough to be able to be part of that.

Watch Rose and Keith as they describe how arts-based practices have taken on an increasingly bigger role in their lives since Keith’s diagnosis of primary progressive aphasia (PPA), a language-based dementia.

How do you think that your connections with the people around you would be affected if your language abilities were compromised? What do you think would be the effect of you, your family and friends spending some time together engaging in an arts-based activity?

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

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