Learning about and living with Alzheimer's through art

Art and dementia appear to intersect frequently these days. Programming for people with dementia is growing rapidly in museums. The Walker offers tours and art-making experiences for people living with dementia and their caregivers. The Minneapolis Institute of Arts also offers tours for this audience.

I recently asked Galen Treuer, Artistic Director of Live Action Set, a few questions about exploring dementia and Alzheimer’s through theater. Treuer and his Live Action Set colleague Noah Bremer co-directed the company’s My Father’s Bookshelf at the Guthrie in June, a play that looked at the powerful effects Alzheimer’s disease has on individuals, families and communities.

Treuer’s efforts illustrate an interest within performing arts to bring the subject of memory loss to the fore. Another local performing arts group engaging people with memory loss is Kairos Dance Theatre. Their The Dancing Heart keeps people living with dementia tapped into the world through movement.

Below is my conversation with Treuer.

Why Alzheimer’s? What got you interested in the subject of dementia and society’s response to this disease?

The idea started a weekend a couple of years ago at my parents’ house. I realized I knew them when they were my age – about thirty – and I started thinking about all the stories I would never hear from them. I imagined making a piece about aging and intergenerational exchange. At the time I was reading “A User’s Guide to the Brain” by John J. Ratey, actually I’d been reading it off and on for the past few years, and was interested in doing a play with neuroscience in it. After talking this idea over with Noah Bremer, we came on the idea of dementia as a good subject for interrupting the story telling. Initially I was drawn to the obscure forms of dementia, but as I read more about Alzheimer’s it became clear we could make something more relevant, less sensational by focusing on the most common form of dementia.

What elements of theater make it an effective media for sharing stories of memory loss?

Theater is a live art. You share the experience with the audience physically, in the moment. People with Alzheimer’s often lose words and the ability to share specific stories, but they gain an ability to live in the present moment. They are not worried about what is going to do tomorrow or the embarrassing thing they said 10 minutes ago. They are concerned with the here and now. Also, our style of theater lends itself to non-linear story telling. Time is flexible, and stories repeat or don’t follow a traditional narrative order. In Alzheimer’s time becomes confused and the linear path of experience breaks down. Also, connection and personal history are the most important thing for people with Alzheimer’s. If someone can’t communicate, at least they can feel like they belong and are heard by creating a connection. And personal histories are the last thing to be forgotten, so they are a great way to build connections. Theater is the energetic connection between an audience and performer. It helps people practice emotionally empathy, and it is a great venue for sharing personal stories.

Theater can also create a neutral ground where scientists, social workers, caregivers, and family members can observe the challenges and nuances of a very personal and scary disease without it being overwhelmingly personal or clinical. The arts create metaphorical space where people can synthesize new perspectives.

At the Walker we’re currently exploring visual arts programming that keeps people with Alzheimer’s and their caregivers engaged in the community. Do you believe joy is possible for people living with Alzheimer’s and that art — visual, performance, musical — may assist in eliciting positive, enriching experiences for them?

Joy is absolutely possible for people living with Alzheimer’s – both those with the disease and their family members. Art is a powerful tool for connecting. It is very emotional and metaphorical. Art provides space to connect and discover each other. There is a lot of wisdom in older individuals (even those with Alzheimer’s), and it’s a joy for both parties whenever you get to share it. Music and dance are especially powerful. I spent an afternoon in a locked memory ward in St. Paul, and when the woman leading the activities started singing the entire room transformed. Everyone became attentive, began humming and started smiling. That afternoon I sat next to a man who had a little radio playing big band music; he just wanted to hold my hand, tap out the rhythm, and tell me,“Yeah, that’s it!” Later, I heard he was never a musician or really all that into music until after he was diagnosed with Alzheimer’s.

In an interview for MPR your directorial partner, Noah Bremer, mentions the importance of laughter and humor for people living with Alzheimer’s and their caregivers. Can you speak to the role you understand humor playing in coping with an ultimately deadly disease?

The most telling thing I noticed in our research was that every nurse I met who spent years in direct contact with Alzheimer’s patients had a wicked sense of humor. In January I spent an hour talking with two nurses at the New York Mills, MN Elders Home about their experience with Alzheimer’s. We probably spent 3/4 of the time laughing. Without laughing, I don’t know how you could deal with the looming tragedy of the disease. It’s also a really great way to keep your interactions dignified. I find humor empowering. It lets us approach uncomfortable topics and laugh at our mistakes and our fears.

In creating My Father’s Bookshelf we needed to use humor, otherwise the play would have been too painful to watch. Ultimately the humor also let the audience connect with Bob (the main character), to love him and respect him. It seems like it made for a more pointed, accessible, and personal tragedy that sat with the audience rather than on the stage.

What was the most meaningful thing you learned during your research and preparation for “My Father’s Bookshelf”

Age related dementia is an epidemic. We will all have to deal with someone who has it at some point, and it’s absolutely possible that I might get it. My family tends to live will into their 80’s, and half of people over 85 show signs of some form of dementia. That said, the way to deal with this is through connection and understanding. It’s what everybody wants no matter how old they are or if they have a disease. We can all start practicing right now. Start collecting stories.

Watch Treuer’s conversation with nurse Ellen Swanson about My Father’s Bookshelf:

[youtube]http://www.youtube.com/watch?v=PABuBC2Gefo[/youtube]