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Inspiring ways of working

Barbara Stephens and Susanna Howard focus on the importance of working 'with' people with dementia, as opposed to doing work 'to' them.
We have so much to learn from people living with dementia. It’s a world that we can only imagine. And by listening and being very present with people with dementia, we can perhaps understand more about the inner working of the world of a person with dementia. And I think that can inspire creativity. We don’t really know how a person with dementia might see the world. We don’t know what they’re hearing, what they’re experiencing. They’re trying to make sense of a world that is different from the world that we’re experiencing. And so that can inspire a lot of creativity for the person themselves and for others who are present with them.
I think it’s vital to really listen, to really be connected, to really be in tune with how a person’s feeling to get that sense of what their experience might be. And we can learn a lot from that. We work with people who are experiencing dementia, people who are isolated. And we work in communities. But we’re really known for our work with people experiencing advanced dementia in care in nursing homes. We’re writers and actors. And we sit, and we have a pad and the pen between us. And we go into the moment with that person. And there’s a process that we call the ‘Listen Out Loud’ technique.
And as the person speaks, we’re holding the space for any sounds, words to emerge. And then through a really long process over weeks– the residences are between 8 and 15 weeks– we are writing down the person’s words and saying them back to them. And we’re editing them over a period of time with that person. Staff can often really want to put forward their best residents or people who they think, “Oh, they talk a lot”, or “They like poetry or the arts.” But we want to be working with people who actually may seem really contented, but they may be just quieter than other people.
Sometimes, we’ll do projects as well where it’s people who are completely isolated in their room and don’t come out of their room. And we’re writing down their words about how they’re feeling in the moment. Those words become their book. It might be one word. It might be just a collection of letters that are a sound that that person makes. Or it may be 50 pages. Everyone has their own book that feels right for them. And then we have a slow withdrawal as writers and artists where the staff are using the books as a bridge with the people who we’ve worked with. And the aim isn’t to get from the beginning to the end of the book.
It’s to connect in the here and now and see what comes up. And then we have a big celebration at the end of the project in which staff will read people’s words. The people will read their own words. And it can be a tremendously revealing moment because what’s interesting is– and I think this is true for a lot of artists– when you’re working closely one to one with people with advanced dementia, it can seem like nothing’s happening. And so it’s fantastic when you’re working with staff, and they see actually what has been happening. And then when we have the sharings at the end, people really do see how people have engaged and what the books mean for them.

In this video Barbara Stephens (Dementia Pathfinders) and Susanna Howard (Living Words) focus on the importance of working with people with dementia, as opposed to seeing arts-based activities as something that is done to people.

Barbara and Susanna explain the critical importance of being present, of listening, and of being in tune with the person living with dementia.

You will hear how it is only through working with people living with dementia that we will be able to learn about the experience of living with the condition, and how, working with people living with dementia can inspire creativity, both for the person living with the diagnosis and for people around them.

This is exemplified a method used by Living Words for working closely with people living with advanced dementia – focusing on being in the present moment together – to produce personalised anthologies. This process highlights how working with people with dementia does not always produce an instant outcome, and how this should not be the goal.

CREDITS We would like to thank the individuals affected by dementia and Living Words for providing all the supplementary images for this video. Image credits in order, as they appear: 1ST BLOCK: * Living Words / Zbigniew Kotkiewicz * Living Words / Alex Rumford * Living Words / Zbigniew Kotkiewicz. 2ND BLOCK: * Living Words * Living Words / Alex Rumford. 3RD BLOCK: Living Words * Living Words / Alex Rumford * Living Words / Alex Rumford. 4TH BLOCK: * Living Words / Alex Rumford * Living Words / Zbigniew Kotkiewicz. 5TH BLOCK: * Living Words * Living Words / Alex Rumford * Living Words / Zbigniew Kotkiewicz.
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Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives

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