Inspiring ways of being

I’m working on the social science stream of a project which is looking at a rare kind of dementia, which is called PCA, which stands for Posterior Cortical Atrophy. And it’s when the dementia affects the back of people’s brains, first of all. So their initial symptoms are mainly to do with their vision, and I’m doing a series of home based observations. So spending all day with participants in their home environment to see how they’re coping with their diagnosis. We were originally going into peoples’ homes to look at the kinds of challenges and difficulties they were facing, and I was expecting to see a lot of that.

But what we realised quite quickly is that if people are having difficulties, they very soon find ways around them, or they reallocate those responsibilities, or they adapt their environment in some way that means they can continue to do the thing that they want to do, but maybe just in a slightly rejigged and different way. I think there have been some surprising parallels between the home based observations and the arts based activities that have been going on as part Created Out of Mind.

There’s a lot of ambiguity in a home context, especially if people are experiencing a type of dementia, and maybe their perceptions have changed slightly, and navigating those different interpretations and perceptions, and finding a way to account for all those different subjective experiences I think you have to do in the home environment, just as you have to do within, say, a group, arts based activity. When people respond to an arts based activity, they’re also bringing all their previous experience, and knowledge, and context with them. And in our work in the home, and also in our work in these arts based activities, I think you have to find a way to account for peoples’ individual differences, and variations in their previous experiences.

In a day to day context, the arts can really help people to make sense of the world around them, whether that’s in creating a piece of art, or listening to a piece of music. I had previously thought that we were kind of embarking on these arts based activities to sort of make people feel happy, or make people feel cheerful and included. And I’ve realised in spending time with people at home that often the arts are not just important for making people feel better, that actually you can engage with a really challenging piece of music, or a really thought provoking and difficult film.

And that it’s– we don’t just all want to feel nice all the time; actually feeling involved, and included, and engaged in something is about feeling the full spectrum of things that we can. And I’m reminded of a gentleman who played me a piece of music that he had recorded with a friend many years before, and the friend had since passed away. And he found it very upsetting, or he was visibly distressed listening to this piece of music. And my instinct was we should turn it off if it’s distressing. Do you want to turn it off? And he said, “No, it’s just wonderful to hear that instrument played the way it should be.”

And it was a really good example of how, yeah, the arts aren’t just there to make us happy, but they are there to help us connect with other people, and make sense of our experiences.