Dementia Dialogue; Season 3, Episode 36

Hearts and the Arts

Transcript of interview with Lisa Meschino by Lisa Loiselle

David - Welcome to an especially exciting episode of Dementia Dialogue when we begin a new series on arts and dementia, curated and hosted by Lisa Loiselle.

The series will explore how the arts can increase the quality of life for people living with dementia and care partners. Some listeners might take up some new art form as a result, and others might incorporate the arts into how they support people with lived experience.

In our first episode, Lisa Meschino, an artist and researcher and practitioner, talks about her work in bringing the arts and people with lived experience together.

Let's listen now as the two Lisa's talk about hearts and the arts.

Lisa L. - Thank you, Lisa, for being here.

Lisa M. - Hi. I'm so delighted to be here. It's so wonderful to talk to you.

Lisa L. - Yeah, this is such an important conversation. We've been reading a lot and seeing a lot about the importance of arts for people living with dementia and their families in their lives. We don't just think about physical needs or cognitive needs, we also think about people's spiritual needs and their need to express themselves.

Lisa M. - Exactly. To be themselves. Their need to be to be themselves fully.

Lisa L. - So tell me, tell our audience a little bit about your involvement in the arts.

Lisa M. - So I am a practicing artist. I've studied painting and drawing for a number of years and am continuing to work and build my skills. And that has developed my personal practice.

But more than that, I love the idea of community arts. So community engaged arts where the arts are used as our vehicle, they are a way to build community, build relationships, build a sense of togetherness for people living in communities. And through community engaged arts, that can cover including youth and older like elders in the community and specifically coming back to our topic seniors or individuals who are living with dementia.

So for a number of years, my creative practice has very much focused on arts in the community, arts that can serve various populations and with a focus specifically on individuals who are living with the experience of dementia and seeing how there's potential for the arts to improve and enhance their quality of life, their relationships and their sense of connection to their communities.

Lisa L. - Now, Lisa, we worked together back several years ago, you won't say how many, several years ago, when you were a post-doctorate at the University of Waterloo, and at that time, you were working on a program called Gather at the Gallery. So you're an artist who was working on Gather at the Gallery, one of your first experiences working with people living with dementia.

Lisa M. - Not my first, but it was one of the first big, cohesive projects, I guess, that intentionally was designed, co-designed with/in partnership with the local Alzheimer Society chapter and local arts organizations and local artists.

So it was really the first kind of large scale, fully community, fully co-creative, collaborative kind of project.

Just prior to that project, I had done some volunteer work at Sunnybrook Veterans Center, where they have a very fulsome creative arts therapy program and worked with a music therapist there. And that was one of my first introductions to working with individuals living with dementia and specifically older individuals living with dementia, which was something that was of great interest and a passion of mine.

So for me, the exploring through the Gather at the Gallery was like a natural progression from that. It came out of a couple of things. If I can tell you the story, I got a story to tell you. So the Gather at the Gallery program really came about through the convergence of a bunch of moments in my life. I knew that I was interested in working with seniors. I was also at that time, just prior to that time, taking a course in my graduate work on aging and came to understand from a different perspective, sort of the neuroscience of aging and cognitive impairment. And so I had both of these experiences, both the immersive arts/ personal relationship experience and then the sort of academic side of that and really got me wondering about if communication becomes the barrier when someone has dementia and along with that, an assumption that somehow memory gets lost or inaccessible, surely there must be other pathways for us to access, for individuals to access some of those memories or those experiences, to be able to connect with themselves in that sense of continuity.

And so it got me looking at doing research for visual arts and arts and dementia, like who's been doing the research on the potential for the arts, for individuals living with dementia. And they came across the wonderful Meet Me at the MoMA program, the Museum of Modern Art in New York. And they were already doing an incredible program there where individuals living in the community who had dementia and their care partners would attend the gallery. They would look at art. They would be guided through like a guided tour of very specific artwork, and they would build conversation and dialogue and engagement around looking at these specific works and creating, as a result, increased sense of connection with the community sort of being able to go out into the community and do the things that everybody does and enjoys again and being able for persons with dementia to connect with their care partner, to share an experience that was pleasurable and enjoyable and something they could continue to talk about.

So that was really the impetus and the inspiration for Gather at the Gallery. And funnily enough, just as I was researching that, someone at the Alzheimer Society in

Kitchener-Waterloo contacted me and they heard that I was interested in this and they wanted to develop this program.

So it's like all the stars aligned and they wanted to develop this kind of community program and they want a research component to it. So we really worked together to develop a full initiative, one that was a very mindfully designed, inclusive program where individuals in the community with their care partners would go to various local artist’s studios or galleries and museums to both look at art and discuss art, and also to get their hands on the materials and to create in the sort of open, guided form of instruction.

And of course, there would be then the research component that was really attached to that program was really gathering the stories. So listening to what the experience of living with dementia for both the person with dementia and their care partner was prior to the program and then inviting them to share their experiences during the course of the year that they were involved in the program and after that year and reflecting on that.

So it was such an exciting program. I mean, I could talk about this all day, as you can tell.

Lisa L. - I remember actually going to the art exhibition at the end of the Gather at the Gallery program and how incredible the art was and just how proud the people were of what they had done. So if you can imagine it was like a regular art gallery with these pieces of glass work and claywork, and people had been throwing pottery (not literally throwing pottery, making pottery) and fabric work. Just an incredible thing.

So with the research, the pre and post, talking in their research lingo, what did what did you find? What was that experience like for those individuals working in the program?

Lisa M. - Oh, it was incredible. Before, because a lot of the couples, most of them were husbands and wives, spouses. There were a few like mother and daughter as well there. But the pairs, I guess, that were part of it, there was a lot of, prior to the conversation, the experience of living with dementia, definitely the focus in the conversation was very much about loss. It was about everything that was changed. It was the change that was depriving them of all the things that they loved to do, the way that they loved to be, feelings of inadequacy, self-consciousness, all that, for the person living with dementia when they're undergoing some of the changes that they experience. There's a sense of, “I can't. I want to go out with my friends again, but I feel they don't know what to say to me, and I can't follow the conversation very well, so I don't know what I can contribute”. And there's that retreat that creates that withdrawal from social life or family life or relationships; that feeling of not being able to engage anymore. And it creates this sense of deep isolation for the person living with dementia and as well for the person who's caring for them. It becomes a lot of managing the grief, the loss, the sadness. For the care partner, there's a sense of grieving the person who they feel like they're seeing someone change and they they're seeing that this isn't the same person that I knew.

And so there's on both sides, the experience is one of disconnect of withdrawal, of having for the care partner to, having to balance keeping life going and at the same time, doing a

lot of the care, the physical and emotional support that goes into that and getting burnt out.

So it's such a complex situation and it's so fraught with emotion and lots of sadness. So that was prior to.

And so when we invited people to, who expressed an interest in the program, to join this program there was a little bit of hesitancy as well, both because they were concerned about what they might be able to do, but also that a lot of the folks that participated didn't have an art background. So we heard a lot of like, “Oh, I'm not an artist. I do crafts or I do gardening. Or maybe I like cooking or I play golf, but I'm not really an artist but I'm open to this”. So they were open to joining the program, which was great.

But generally speaking, there was, prior to the program, it was in terms of dementia, it was an experience of loss and sadness, and also hesitancy in terms of jumping into something new, completely new for a lot of them.

Post-program it was a complete turnaround. Over the course of the year, we ran several sessions. They were about five weeks each with per artist or per museum or gallery, and we kept the same group of people. They kept returning over and over because there was very little attrition, I guess you would say, loss of participants because people loved that they were learning something new. They loved the gentle approach, the inclusive, social element of it. It was a very unique approach. And I think that's what made it possible as well.

It was really designed for people who are not necessarily knowledgeable in the arts and also for people who are living with the experience of dementia. So it's not about following a set of instructions, it's not about big volumes of facts and information just sort of dumped on you to sort of process. It was really interactive. It was really driven by the observations and the wisdom and the stories of the participants themselves. That's what came out. So when you're looking at a piece of art, it was it was making that personal connection and using that personal connection to engage with the work of art.

And also in the case of making art, it was using their experience, the tactile sensory experience of the materials themselves and letting that guide them in sort of making the whatever the object was that we were hoping to make, whether it was like a glass plate or pottery dish or bowl or a collage, it was just getting a feel in their hands of the clay or the paper and being able to choose their materials according to what they liked. Choice, what they were drawn to, what colors did they like? What do they like the feel of? What were some objects from home that meant something to them that they could incorporate in some way into the art?

So all of those things were, I think made it a very positive experience. It really opened up what was possible for them. And it was beautiful to see because in the course of participating in a session, as people got comfortable with each other and comfortable with the artists, it was something they looked forward to every week. They formed these friendships among themselves that would spill out beyond the limits of that program. So they would meet outside of the program, socially. They would organize little day trips for themselves, or they would go off to the museum on a weekend and have a look at what the latest exhibit is. They felt that comfortable and that excited about a whole new world of art and culture and knowing that they are part of it. This was really something special.

Lisa L. - That was several years ago that that program launched. And I know since then you have been doing some other incredible work. I know you were up in the northern regions of the province doing some work there and more recently in Toronto at the Bitove Academy. So can you just talk about some of those other engagements that you've been working on?

Lisa M. - After Gather at the Gallery, I was delighted to come on board a new pilot project called the Dotsa Bitove Wellness Academy, which opened its doors in 2013. It was a center of arts based learning in the community for again, for individuals living with dementia and for their family members. There was support for their family members as well.

It was a project that was the brainchild of, or a partnership between University Health Network and the York University School of Nursing. And they wanted to create an environment and a place where, based on a philosophy of relational care that has very deep roots. This idea has very deep roots in the nursing programs and the nursing literature. So taking that concept, that idea, that philosophy of relational care, something that care is very much focused on relationships and relationship building and all that goes with it. Taking that philosophy and creating a special environment where you actually have space to explore and practice that and the arts are a way of engagement. They are the way in to engage with people with dementia and their care partners.

So it was a beautiful, just another incredible, beautiful space, and it was located in Toronto and it was for people living in the community who were living with the experience of dementia.

They were invited in to participate in either half day or full day programing. So we had music, we had drama and theater, we had poetry and storytelling, visual art, dance and movement like yoga. All of that was on offer at the Dotsa Bitove Academy, and those were the forms of creative engagement by which we were, the focus was getting to know people. Getting to know, again, it was a way of bonding with people, of forming relationships. You're learning about people's stories, about what's important to them in their lives and where they've come from, where they're going, what their dreams are, what are their current interests and what's important to them now, given their history. And all of that is explored through making music together or making visual art together or moving together, whether it's of a wild, free form, freestyle dance party or more guided yoga or a Nia type of movement, it's just it was an incredible place of learning and for everybody involved.

So it sounds like a very simple concept, but it was very challenging. I was involved in this as an artist and at the start sort of getting the program up and going and helping with learning about how do we translate relational care into a practice, how do we walk the talk, in other words. It was a learning process for all of us involved, for the staff, for the volunteers, for the artists, the professional artists who came in to work and engage with folks there as well as the participants. We were all learning together.

So it was a unique environment in that way, in that everybody had to kind of throw out the concept that they're experts in a certain field. That we are we engage with each other; staff, family, participants, volunteers, we engaged with each other, both as teachers and as learners. We're all there to learn from each other. We're all there to share our knowledge and wisdom with each other in whatever form that takes place in.

So it wasn't so much teaching in the sense of you have a teacher who's telling you things. It was we're sitting side by side. We're engaging in conversation over a family style lunch. We are listening to music together and creating story together or sharing stories together or memories with each other. That kind of thing.

And we're learning to let go of some of the rigid structures of learning that we pick up in our lives. We have a certain idea. Like, for example, I'll give you an example: as an artist running a program, you might go in thinking, “Okay, I've got a plan. We're going to do this today and it's going to look like this and I'm going to start with this. We're going to do X, Y and Z, and it'll take us to the finished product”. Great. And you go in and you may have someone who's not having a good day or they are just quiet or they've got something on their mind, something happened that morning in the process of getting up and getting themselves to the location and it's just changed how they are engaging in that moment.

So suddenly your plan may not work. You may not be able to reach that person. And so what's more important then? Is that plowing on with the plan you have or you toss that away and you work in the moment. You receive what's being given to you and you work together using all your senses, your imagination to see where creative engagement can happen and where that takes you. So you may go in with an idea for we're going to do painting today, but in the end, maybe what you do is you end up writing a poem together that's based on the mood or a story that came out in the course of conversation that morning.

So there's that needing to be flexible, needing to adapt, needing to learn and respond and slow yourself down and just really being fully present in the moment.

So the Bitove Academy was such an incredible place. The relationships that I've formed with the staff there and with participants were very deep because of that, and it stayed with me when I had the opportunity to leave Toronto and to go up to Sault Ste Maire to do some work there with the Alzheimer Society. I really carried all that I learned there about relational care and what's possible.

So when I was up north, I never forgot, the experience at the Bitove Academy was so powerful and the relationship so strong that I stayed in touch with people there and ended up saw an opportunity in conversation with the program coordinator there to connect the two communities. That we can build relationships not just with people who are right there in front of us. We can build; we can create connections across geographical divide as well.

So what we did was we concocted this little mail art project where members of the Bitove Academy were creating little postcards with drawings or inspirational words or phrases on them and colors, just communicating something about their day or what they would hope for their friends in the north for their day, and they would mail those off to us in the north.

It was just amazing to be in the office and to receive this package and open it up together. The staff and some of the participants who were at the office for their recreational programing and to see these beautiful, colorful, joyful messages and to be able to pin them up on the wall and have them look at them and then make their own and send them back down and address it to members of the Bitove Academy. So there was this beautiful dialogue that was visual and creative, happening and creating this rapport.

So there's so many possibilities for connecting communities, connecting people to their communities and connecting people to each other, I think through the arts,

Lisa L. - Programs like this really go against people's ideas, the stigma that's placed on people living with dementia. It just goes completely in the opposite direction because a lot of people in the general population would think, “Well, how could they create? How could a person living with dementia create art? How can they connect when they don't have that cognitive ability to do that?”

And that's why I think the arts is so important because it really does open people up to a different way of communication.

Like you said at the beginning, it's with people living with dementia, they can still communicate. You have to find those ways, those expressions that allow them to do that.

All of these programs really speak to that. It kind of throws it in the face of people that think that you can't and it's not possible for them to be involved in something like this.

Lisa M. - It's very interesting that when you talk about stigma…

So I remember at one time, asking around a few coffee shops and public locations where we could have the art. I thought it would be great to bring some of this artwork that had been created into the community to get it into the community, again to subvert the stigma that is associated,right? To show people like you said, when we had the exhibition of the Gather at the Gallery work at the Button Factory, people who came in to see it were amazed by the beauty of the work, the quality of the work, and they didn't necessarily know that it was created by somebody with dementia. It was not a factor in how they responded to the work.

So that idea was like, let's get the artwork into the community. Obviously, if people can see the glorious work that's created, it might help shift some of that stigma that's in there, but there is still a barrier just to even approach certain businesses.

I remember one business fellow, one fellow who ran a business in Waterloo, said to me, “Well, you know why would we want that artwork on our wall? That's just going to depress people?” I'm not quite sure what he was getting at. Depressed them because they were done by people with dementia and dementia is such a horrible thing? Or because you think the artwork itself is going to be depressing? It just really revealed to me how deeply rooted and we don't really examine sometimes those assumptions that we make, but it was definitely there.

How do you shift that? There's still a lot of work to do in terms of shifting. Any kind of culture change is a slow change. But it's good to hear that. Those kind of assumptions about living with dementia are definitely still out there and there's lots of fear around it.

So there is a place and there is definitely a need for more community engagement and the arts are a great way to do that.

Lisa L. – I want to thank you, Lisa, for just sharing all of your knowledge and experience and the lovely programs that you've worked on over the years. I've seen the end results. I've seen what the process is like and how that's impacted folks living with dementia and their families. And I thank you for that work.

David - Thanks very much to Lisa Meschino for the insightful conversation and to Lisa Loiselle.

I too often think of dementia as a communication disorder, along with other issues where our usual channels of communication no longer worked.

As Lisa shows, the arts open up new channels to both the person with lived experience and those in relationship with them.

Be sure to have a look at our show note for more information about relational care and the arts, and also go to our resource page under the arts section, where we have posted several paintings and photos that Lisa Meschino shared with us. You will enjoy looking at them.

Our website again is www.dementiadialogue.ca

We want to expand our virtual gallery and library, and we would like your help. If you are a person with lived experience who has produced some art, perhaps a painting, a drawing, a

poem, a song or a story, please share it with us.

Perhaps you have performed something that has been recorded. Please send this along to us at Dementia.dialogue@lakeheadu.ca and we will post it on our website in our virtual gallery and library.

Maybe you are involved in an arts group. If so, send us a note about it, including how others might get involved. We will also post these opportunities so that others can get involved or perhaps create opportunities closer to home. Send the information to us at Dementia.dialogue@lakeheadu.ca

Our next episode begins another new series on the experience of folks who identify with the LGBTQ2S community and how dementia affects them in specific ways. It will be interspersed with our series on the arts over the next couple of months.

Thanks to the Center for Education and Research on Aging and Health at Lakehead University, our institutional partner and to the Public Health Agency of Canada for its financial support.

My name is David Harvey.