Podcast – Researching Art to help people with Dementia

Voice Over:

Welcome to the NIHR Dementia Researcher podcast brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early-career dementia researchers across the world.

Dr Megan O’Hare:

Hello, welcome to another podcast brought to you by the Dementia Researcher website. I am Megan O’Hare and today I’m delighted to be joined by Dr. Susan Liggett, Reader in Fine Art and Associate Dean for Research Faculty of Art Science and Technology, and Dr. Megan Wyatt based at the Wrexham Glyndwr, I should have checked how to say it, University.

Dr Megan O’Hare:

We’re going to be discussing how arts-based methodologies and the knowledge and skills of an artist can be used within the field of health to create new understandings and promote wellbeing. Both Susan and Megan are artists. Megan’s PhD looks specifically at utilizing her skills and perspectives as an artist within health to create new knowledge. Susan works with Megan and supervised her PhD and together they co-authored a paper, The Potential of Painting: Unlocking Disenfranchised Grief for People Living With Dementia. And so we’ll touch on that today. They are in the process of writing a chapter for the practical handbook of dementia to be published later this year. So welcome to you both. Hi.

Dr Susan Liggett:

Hi.

Dr Megan Wyatt:

Hi.

Dr Megan O’Hare:

Maybe we could start with a quick round table introduction from each of you to tell us your background and how you came to work in this field. So, Megan.

Dr Megan Wyatt:

Yeah, so hello. I, as Dr. Megan said, I’m a practicing artist and researcher. So my background is in the arts. I did a degree in Fine Art and then a master’s in Art Practice. And I became interested in dementia through a personal experience really. So I lived with my grandma who was diagnosed with Alzheimer’s disease, and I became very quickly aware of the difficulties that people living with dementia face and also those who are caring for them face and I became interested in how arts could improve the lives of people living with the condition. And so from that, I then set about my PhD and it’s gone from there really in a nutshell.

Dr Megan O’Hare:

Okay, great. And Susan?

Dr Susan Liggett:

I’ll firstly, thank you for inviting me and thanks to Megan for inviting me as well on her podcast. I was Megan’s supervisor for her PhD. I’m practicing painter myself, but also the Associate Dean for Research at Wrexham Glyndwr University. And I’m very interested in how the visual arts can contribute to a better society and I was very excited when Megan came to me wanting to study for a PhD in the field of dementia, partly because my mother has vascular dementia and although I’d done some work in the arts and health, I hadn’t specifically worked in the field of dementia. So it was an opportunity for me to supervise Megan.

Dr Susan Liggett:

So I worked very closely with her and helped her with workshops with the people living with dementia, and we wrote the paper together. And now that Megan’s graduated, I’ve made her a visiting researcher at the university and we’re looking for opportunities to work together again in the field of dementia. So yes, we’re looking at the North Wales context as well. So very much looking at how we can work with other organizations within North Wales to further the arts and health work that is ongoing there at the moment and we’re both on the steering committee for the Wales Arts Health & Well-being Network and the North Wales Concordat of Arts and Health.

Dr Megan O’Hare:

Great. I think we are going to jump in Megan and talk about the findings from your PhD, but can we come to another question first? Did you say you did a masters in arts practice? Was it?

Dr Megan Wyatt:

Yeah.

Dr Megan O’Hare:

Yeah, and I think… I was reading your paper and I sort of thought, Oh yes, it’s about art therapy in that way that people, you read an abstract and go, Oh yeah, I totally know what this paper is going to be about. But actually it’s not art therapy, isn’t it? It’s art as a research tool. So maybe us too we could start with that so everyone’s on the same page.

Dr Megan Wyatt:

Yeah. So that was something that I thought a lot about especially sort of in the early days of my PhD and Sue helped me a lot with that, with where do I fit? And actually, I think art therapy is more about, say the clinical benefit that somebody is having. And as I sort of started to look around at the different literature, there’s lots of literature and research that’s emerging that says doing art for people living with dementia benefits their wellbeing. And that’s sort of becoming this known entity and being acknowledged that it is useful. But I think what I was interested in and where my gap in knowledge was, was how is it benefiting their wellbeing and what is happening when those people living dementia are engaging in art.

Dr Megan Wyatt:

And so, I know I spoke briefly about my grandma, but where it started was, so I was doing my master’s in art practice and my grandma was also a painter, and I noticed that there was lots of similarities between what I was doing and what she was doing. Even when she was really quite unwell she carried on making this art, where can I… I became interested in those experiences of making and my knowledge as an artist, if those experiences of making and how I could work with people to really understand their engagement in the arts. So the focus was more on that process of making the art itself, rather than focusing on that improvement to how they were. Does that answer your question?

Dr Megan O’Hare:

Yeah. So using the art and the act of creating the process to explore how you’re feeling about the world a bit more maybe?

Dr Megan Wyatt:

Yeah. And to try and gain an insight into that X, how do you feel when you pick up a paintbrush? Why do we choose certain colours? It’s all about those personal connections that we have and how do we communicate things and it’s quite hard to verbally articulate because a lot of those experiences defy verbal articulation. They’re all about kind of you connecting with that medium and expressing sort of thing. And I was interested in how for people living with dementia, their verbal ability is something that they may not have anymore, but I was interested in how could they still connect with those non-verbal experience.

Dr Megan O’Hare:

Should we move on to the findings from your PhD then?

Dr Megan Wyatt:

Yeah, that sounds good. So my PhD at the end of it suggested that people living with dementia could express their memories and feelings through painting. It suggested that painting could embrace feelings of uncertainty for people living with dementia and also provide an immersive experience for people. Finally, the last finding was that painting could provide verbal and non-verbal decision-making for people living with dementia, so they could make decisions about things. And my participants did lots of decisions, but none of them required verbal communication. [crosstalk 00:08:48].

Dr Megan O’Hare:

So most of their decision-making were the?

Dr Megan Wyatt:

So for example, a lot, well, the majority of participants knew when their work was finished. So they could have created this completely abstract image, but findings suggested they’d hold it or they’d add a tiny, say pink dot to an area, and then they put it down and they’d say they finished, or they just stopped painting. They all chose colour on their own. So, I worked with people whose dementia sort of was moderate getting onto advanced and they all chose colour on their own. They all made marks on their own. So really there are still processes and decisions going on that they didn’t need to talk about. They could just get on with it. So their verbal ability didn’t matter.

Dr Megan O’Hare:

Okay. I know we said that art therapy is more about increasing well-being. And so this is a different idea, but the decision making must help in a way they feel a bit more in control in a situation that probably feels very much out of control. So, it is quite a good experience from that point of view in that they are choosing the colour themselves. This is the colour I am choosing. I am choosing when I have finished. Did you find that they felt quite empowered to be able to make those decisions?

Dr Megan Wyatt:

Yeah, definitely. And I think, although the focus of my PhD wasn’t on that kind of benefit to well-being, that was something that was a really strong theme that emerged, was that it was a really positive experience for people and it did allow them to make decisions. It did, for example, a participant came in and he was really upset and then painting sort of, it created that immersive experience for him and focused on that present moment and he stopped crying. So, there were lots of examples of how people did find it positive or that wasn’t the initial focus of whatever he’s doing.

Dr Megan O’Hare:

Yeah. And you said it was a positive experience, which was good, but it also unlocked a lot of feelings and memories. And you talked about disenfranchised grief, did that also bring up quite a lot of negative feeling which were also valid and part of the process? Did that also?

Dr Megan Wyatt:

Yeah, so similar to positive experiences emerging also negative experiences did. And I think sort of at the outset, that was something that I hadn’t anticipated has being a key theme within my work, but I worked with eight people living with dementia, and all eight of those at times in the workshop expressed negative emotions, either kind of through their facial expressions or they would cry or through what they said. And I think that’s how Sue and I came to write the paper because those feelings of grief did become present within my research.

Dr Megan O’Hare:

Sue, maybe you can jump in here and talk a little bit, maybe about the practical side of it, how you set up the workshop, how they were run.

Dr Susan Liggett:

Well, that’s quite an interesting question actually, because Megan could probably talk a lot about this because initially, we set up or Megan set up a workshop whereby the participants came to the university and Megan had particular activities. We set them at tables together. A lot of thought went towards how logistically we were going to work with the participants in the university. And the challenge was trying to both engage with the participants and capture the information at the same time for the research, and what Megan ended up doing was working one-to-one with participants in the setting that they were used to working in which was, it’s Ruthin Craft Center in North Wales, a gallery where they go every week and have a workshop and in an art setting. So Megan ended up working with them one-to-one and it was much richer experience. And your attention has to be so much on that individual you’re working with when there’s only two researchers or artists researchers as we call ourselves with participants. It’s very difficult. So it was a steep learning curve. Wasn’t it, Megan?

Dr Megan Wyatt:

Yeah.

Dr Susan Liggett:

[Inaudible 00:14:09] anything more about the practicalities?

Dr Megan Wyatt:

No, I think you’ve covered it really well. I think just one thing to add was the initial grief workshop that I did. I displayed my artwork around the room and I asked them to respond to that, and actually they had a nice time, but what I’d set out to do was too prescriptive. So they didn’t really engage with it in the same way as they did when I was working with them one-to-one because to them, my artwork didn’t really mean anything compared to what they were able to paint in the individual sessions. So, some of them did sort of make paintings and responded to the shapes and colour [inaudible 00:15:04]. But as Sue said, it just wasn’t rich enough data and I wasn’t really able to get to know them and understand the process in the same way that-

Dr Megan O’Hare:

That was also a big group, that was all eight together. Was it? [inaudible 00:15:22]?

Dr Megan Wyatt:

Yeah. So it was all eight and then their care partners came. And I think like Sue said, the fact that the space wasn’t familiar… And I think I just realized that for my participants, the most important thing was supporting them to pain and engage with something that was really personal to them. And also being able to respond to their individual needs, whereas in a group. It was too prescriptive what I’d set.

Dr Susan Liggett:

Just to jump in, what did work particularly well was the exhibition at the end of the project. So we’ve got a really quite nice gallery within the university. And we set up an exhibition of their work alongside Megan’s paintings, and we had a really nice event where we invited them. We had lunch and it was a celebration for them and their families. And that was particularly important aspect of the project, I think, to have that celebration and for their artwork to be exhibited alongside professional artists work. So it wasn’t seem to be, Oh, this is paintings from people with dementia. The quality of their work was important and to raise the status of their artwork to that of a professional artist was particularly important, I think.

Dr Megan O’Hare:

Did you find that, because you said that the initial workshop you had all eight people and their carers there, and you had exhibited your work but there was not so much engagement like you’d go to an art gallery and go, Oh, I like that painting, this, that and the other. Did you find out that they were more engaged with their own artwork and could… There was more engagement that way?

Dr Megan Wyatt:

Yeah, definitely. I think because it meant something to them and the majority of participants painted a memory. So when they saw it on the wall, I think there was that massive sense of achievement for them because we got them really nicely framed, there was that feeling of, I guess a sense of achievement, I think is the best way of putting it. And also when they then viewed their work, I think it reminded them and they engaged with what they’d been thinking about and what they’d been feeling. So yeah, definitely worked better.

Dr Megan O’Hare:

Mm-hmm (affirmative). They were obviously quite personal moments and quite, I guess, probably quite private some of them, but you were doing in one-to-one, that they were happy to have them shown publicly?

Dr Megan Wyatt:

Yeah. And that’s something that I was very aware of and so I made sure that that was the case before it went ahead. But yeah, they were all keen and some of them had done more than one. So I hope it worked well.

Dr Megan O’Hare:

I’m just wondering, at the beginning you were saying that they’re actually part of a painting group anyway, the gallery. Is that right?

Dr Megan Wyatt:

Yeah.

Dr Megan O’Hare:

So then I just wondered, do you think it would work with totally naive painters if you see what I mean?

Dr Megan Wyatt:

Yeah. And that was a point that came up through my [inaudible 00:18:55] actually.

Dr Megan O’Hare:

Oh, sorry to make you [inaudible 00:18:58] again.

Dr Megan Wyatt:

No, it’s okay. But yeah, I think they were all engaged in art, so they were part of the lost in art groups. So every week they did a different type of creative activity so they were obviously interested in that. And I think it may have been different if working with people who’ve had no experience, but that was just some things that I accepted and I stated in my thesis, I was clearly working with people who were familiar with engaging in creative activities.

Dr Susan Liggett:

I was just going to add a little anecdote. My mother, I’ve tried to encourage her to make paintings with me, obviously, your daughter’s an artist. So she really does not like doing that. So what I’ve done with her is I’ve been drawing her, so I sit with her every week for two hours and draw her and it’s working really well. The engagement that we have is really rich [inaudible 00:20:08]. I probably wouldn’t have thought of doing that if it wasn’t the Megan’s project.

Dr Megan O’Hare:

I guess it’s just totally uninterrupted time focused on each other, but you don’t have to talk which must be, because social situations are stressful. So you’re not enjoying each other’s company because you’re feeling stressed. But if you’re sitting, does your mother talk to you or is she…

Dr Susan Liggett:

She normally reads. She kind of reads the same book over and over, but she’ll know and then she’ll remember things and she’ll just have an a [inaudible 00:20:50]. So we’ll have little bit of conversation that seem more natural than if I’d just go and see her and sit down with her.

Dr Megan O’Hare:

Yeah. I saw this thing, really different to this, but it was about parents trying to connect a bit more with their teenagers. And what they did was they made them drive in a car. Obviously the parent was driving the teenager in the passenger seat and they’d go for like a half hour drive. And because you’re not looking at each other and you’re in the car, you don’t have to talk, that you found that they talked more and more deeply because they weren’t, it wasn’t sat down and forced.

Dr Susan Liggett:

Yeah.

Dr Megan O’Hare:

[inaudible 00:21:31] went having to look at each other. Obviously you’re looking at your mother to draw her, but she can be doing something else. So it just takes the pressure off the social situation.

Dr Susan Liggett:

Absolutely, yeah.

Dr Megan O’Hare:

And did you find that Megan a bit with when, because you were focusing on task that people were focusing on a task, so picking up the paintbrush, choosing colours, that it sort of helped unlock that way so they’re doing a different task so other memories can come out to see what-

Dr Megan Wyatt:

Yeah, definitely. And it definitely did stimulate different conversations. And I think something else that also helped was I painted alongside them, just sort of going back to talking about negative emotions. So seven out of the eight participants were quite negative about their own capabilities of painting. So that was either right at the beginning. They’d say, I don’t want to do this. I can’t do it. I’m no painter. Or throughout, they’d say, that’s not very good. I can’t. And there was a clear sort of frustration and I think through being able to paint alongside them, that created a form of conversation between my painting and their painting that you wouldn’t have had [inaudible 00:22:57]. And some of the time I would be talking just some of the day and I’d just start to paint and that seemed to really help them to then start to paint and it just became this mutual session barely rather than me being a facilitator and then being the participant. And I’m from that yet lots of sort of rich conversations emerged and it was good.

Dr Megan O’Hare:

The sort of way your papers set out is really talking about disenfranchised grief, which I know we sort of touched on earlier, but maybe you could talk a bit more about that in the context of what you achieved with your PhD.

Dr Megan Wyatt:

Yeah. So, I think I mentioned before negative emotions emerged just quite a key theme within my research and I became interested in the concept of disenfranchised grief, and I looked at literature and there wasn’t a lot out there specifically looking at disenfranchised grief for people living with dementia. But what there was, was saying that for people living with dementia, negative emotions and feelings of loss can often develop into disenfranchise grief.

Dr Megan Wyatt:

So just to sort of in a nutshell, say, what is disenfranchised grief is grief that is either not openly acknowledged, not socially sanctioned or not publicly mourned. And my findings from my PhD suggested that participants were feeling those things. So for example, one of the participants came into the session and then as soon as his wife had left, he began to cry. He was very frustrated about how he felt incapable of doing things and the reliance he had on his wife. And it was that kind of, I think that experience actually with that participant was what sparked my interest off. It was looking at how he felt like he couldn’t openly acknowledge what he was feeling. Yeah, and then the research went from there.

Dr Megan O’Hare:

Do you mean openly acknowledged to his wife and to himself as well?

Dr Megan Wyatt:

Yeah, so I think in that case he felt he couldn’t openly acknowledge it to his wife. It was quite a hard concept to work on because people’s verbal communication was quite fair read, but I was interested in suggest what could be suggested from that. So the fact that he’d waited until his wife had left the room and then he immediately became very upset, it was this feeling that I got that he didn’t want it to become upset and didn’t want to say those things whilst his wife was there. And it just got me thinking about the stigma around dementia and how do people feel like that. And actually through painting, can that give people a sense of purpose? And with what we were saying about decision-making, it gives people back a sense of control, a sense of purpose and that’s where the paper developed from really.

Dr Megan O’Hare:

And also, I guess you’re making something like, it sounds a bit trivial, but you’ve gone from a totally blank piece of paper to a picture although you said some people felt uncomfortable and they didn’t think it was any good. It’s still going from nothing to something and you have done that yourself. You’ve created that. Like you said, you made the decisions on the colour and all of that, but that’s something that’s now in the world that you have made, and I guess those feelings of stigma that you can’t openly acknowledge grief and social dislocation, is that one of the things you’re feeling less of a contributing person, but this is a thing that you can do and you can make at the end and you have something that you have done yourself to show for time [inaudible 00:27:27] and you’ve put your thoughts and memories into it.

Dr Megan Wyatt:

Yeah, yeah, definitely. And yeah, you’ve hit the nail on the head there really, that was what was important and I think why the exhibition at the end was so important because it was celebrating that achievement. And there were, people did experience negative emotions, but also there was this kind of positive experience where they were genuinely pleased with what they’d done and I was trying to focus on… For people living with dementia, there’s often a huge sense of loss with regards to what they’re experiencing and I was looking at what experiences can people still access even if their verbal ability isn’t as good anymore. And my workshop seem to tap in to those capabilities that people had so they could produce something at the end that they felt was a sense of achievement.

Dr Megan O’Hare:

I just wonder sort of now, what’s happening now for you? Because that was obviously your PhD. Right now up you’ve done your [inaudible 00:28:43], do you think it’s something that could be implemented in social care pathways? Are you pushing for that? What’s happening now with your work?

Dr Megan Wyatt:

Yeah. So as Sue mentioned earlier, we’re both looking for opportunities. I think there is an issue with funding and doing one-to-one workshops. It’s not necessarily as sustainable model as doing great workshops, but I think what I’m interested in is pushing for funding that will allow Sue and I to focus on this one-to-one sort of interaction between us as artists and people living with dementia. But also to use what I’ve found from my PhD and apply that in perhaps bigger group settings. So a very way that I would do that is rather than even if I was with a group of people living with dementia, I wouldn’t have a set task for them to do. I kind of be mindful and try and support them to create something that’s personal to them. But yeah, that’s definitely something that I’m quite passionate about carrying on. And also using artists and using the knowledge that artists have to promote new knowledge in health and that’s something that I’m really interested in and I think Sue is too. I don’t know if you want to add any more, Sue.

Dr Susan Liggett:

I might just say a little bit about some of the initiatives that we’ve got that we’re hoping might lead to other opportunities. So we’re working… In Wales, they have a arts and health coordinator in every health board. So we work very closely with the arts and health coordinator at Betsi Cadwaladr University Health Board. We’re looking for the possibility of bringing some grant income in to work with the health board on outreach projects possibly in field of dementia. So we’re just looking at partnerships really and ways of working effectively across different organizations either local arts galleries, health board. It’s quite challenging at the moment, obviously, and particularly with COVID, but we’re doing what we can. We’re not going to try and disseminate the findings of the research.

Dr Susan Liggett:

There’s Bangor University also have dementia centre; we have worked with them. So we’re just looking at new models of working to try and promote the work and obviously the ultimate goal would be to embed some of this work into healthcare services. That’s the ultimate goal.

Dr Megan O’Hare:

Sorry, I’m just going to turn your side. Did you say this arts and health board, is that what you said?

Dr Susan Liggett:

Our local health board in North Wales is called Betsi Cadwaladr University Health Board. They employ an arts and health coordinator [inaudible 00:32:21] specifically, and Wales has done this with every health board and partly with the help of Arts Council Wales to basically embed an individual or coordinator in each of the health boards in Wales and they work together looking at initiatives across Wales that fits into [crosstalk 00:32:48].

Dr Megan O’Hare:

Wow. All right.

Dr Susan Liggett:

Yeah.

Dr Megan O’Hare:

That’s amazing. So this is sort of part of what you were talking about at the beginning, visual arts for a better society and someone on the health board?

Dr Susan Liggett:

Yeah. I think a lot of this work in Wales is driven by the Well-being of Future Generations Act, which the aim is to embed culture and well-being into every aspect of life. So for example, all the arts organizations will be looking at this Well-being of Future Generations Act to basically try and the vision is to ensure a better future through culture, health, and well-being within Wales. So the Arts Council of Wales are promoting this and very much looking at arts and health and looking at ways of funding it and ways of working in collaboration with other organizations such as the health boards, arts organizations to grow projects in the field. So the evidence, the research is really important because that’s going to actually help with that work. If we have the evidence then we have the possibility of expanding the work.

Dr Megan O’Hare:

That was amazing. I didn’t realize that. Okay. I think we’re coming to the end of today’s podcast. Do you have any other bits you want to discuss?

Dr Megan Wyatt:

I just wanted to say thank you, really.

Dr Susan Liggett:

Yes, thank you very much for the opportunity. I’ve enjoyed it.

Dr Megan O’Hare:

Welcome, it’s been fascinating. My dad has dementia and he used to paint and he’s actually really come back into it. And you sort of got me thinking that maybe I should sit with him while he’s painting a bit more and spend that sort of time with him.

Dr Susan Liggett:

Yeah.

Dr Megan O’Hare:

Like we said about not forced conversation, we can just sit and paint and see what happens.

Dr Susan Liggett:

Awesome.

Dr Megan O’Hare:

So yeah, it’s been very inspirational. Thank you very much to both of you. We have profiles on both of today’s panellists on the website and their Twitter accounts. If you have anything to add on this topic, please do drop us a tweet using hashtag NIHR Dementia. And I’d like to remind everyone that we have a great website, dementiaresearcher.nihr.ac.uk, register today and you get weekly up to date. We have daily blogs, events, details of the latest funding calls and jobs. So thank you very much for listening.

Voice Over:

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