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Working with people at different stages of their dementia journey

Barbara Stephens and Alice Thwaite discuss how no generalisations can be made when working with people with different dementias.
Dementia affects everybody differently, and different forms of dementia have different impacts. My approach is to work with people from the perspective of them being an individual, from who they are. I don’t really need to know about their dementia. I don’t really need to know very much about their history. I like to work with people as I find them in all senses. They will tell me what they want me to know. They will present to me aspects of their character, their personality, their interests. They will engage with me in a way that makes it possible to create connection in the moment. And that’s what’s important. I often say, a diagnosis of dementia is a moment in time.
People receive a diagnosis, and the day before the diagnosis, and the day after the diagnosis, really they’re no different. It’s a day. And yet, people’s confidence drops away very quickly. There’s a real sense in which people will begin to define themselves by their condition once they have this name. I try and unruffle that, and work with people just in the moment, around what they’re interested in– the skills, their talents, their abilities. And what they want to do on the day. We all have bad days. We all have good days. We all have days when we feel motivated and inspired, and days when we feel lower in mood. And people with dementia are no different.
So it’s about, for me, working with the person as they are the day I see them, the moment I see them, and how they feel. And I might try different approaches to change the mood, or to engage in activities. But if they don’t want to, then I’m happy with that. The artist who is working with people with dementia needs to have a real interest in exploring with that person, whatever it is. In other words, it’s not a teacher/pupil relationship. It’s not as basic as teaching someone how to create a glass window. It’s about exploring what that means to that person as you deliver. So it’s very much an art practice as opposed to a craft practice.
And I think people sometimes think, oh, that’s fine, you can do arts activities as in, let’s just make a Christmas card. That’s not what it’s about. It’s about the actual connection between the people that is making that, whatever it is, that piece of art. And that’s the key. That’s the important thing. So it’s the engagement that’s really vital. Everyone experiences dementia differently. And there are so many different types of dementia. So I think when artists are working in this way, being able to be multi-sensory is very important, because in some ways it’s like a detective with a key, working out which is the thing that works the best.
So it might be for somebody that might be around music that that’s an important driver– a way in. Or it might be that somebody explores their creativity through painting, dance. So I think it’s the opportunity to try new things and different things. There is a sense, and now there’s a lot of evidence that working with people with music in later stages of dementia, once a lot of other cognitive powers have gone, is very important. So I would always think that end-of-life music is a really, incredibly important way of working with people at that stage. But beyond that, I think it’s a very individual thing. And I think different people respond at different times as well. And we’re all different.
Just as I would respond differently to all the different art forms in different ways, I think that’s true with people with dementia as well.

Barbara Stephens (Dementia Pathfinders) and Alice Thwaite (Equal Arts) discuss how no generalisations can be made when working with people with different demantias, or at different stages of their diagnosis.

They provide some thoughts on you can best work together with a person living with dementia. You will be encouraged to distinguish between arts practices and crafts practices, and to think of arts practices from a multi-sensory perspective.

You will also be introduced to the idea of in-the-moment experiences, which will be explored in greater depth in Week 2 of the course. In particular, Step 2.13 will investigate in more detail the critical moment of receiving a diagnosis.

CREDITS We would like to thank Equal Arts for providing the supplementary images for this video.
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Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives

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