University Times

A theatre professor who champions creative engagement shared examples that demonstrate how artists are enriching the lives of people with dementia in a May 30 lecture, “Forget Memory, Try Imagination.” Her talk at Rodef Shalom Temple was part of the Graduate School of Public Health (GSPH) Jay L. Foster Memorial Lecture Series on Alzheimer’s Disease.

“I think to engage and bring people to their fullest potential at any point in their lives includes people with dementia who are reachable. We know and have the tools to improve quality of life at any stage,” said Anne Basting, executive director of the University of Wisconsin-Milwaukee Center on Age and Community.

Negative images

“A lot of the way we frame care impacts the way people experience aging,” Basting said. Research has shown that negative images about aging can cut longevity by 7.5 years and that demeaning “elder speak,” such as being called “honey” or “sweetie” or “dear” by people who haven’t earned the right to use terms of endearment elicits negative responses even in individuals with advanced dementia, she said.

Induced dependency is another negative aspect of long-term care, she noted, citing a study that showed that nursing home residents who were told that they would need help to complete a “hard” task have more trouble completing it independently than those who weren’t given that message.

Environmental change

“How can we now change the environment to improve the lived experience of people with dementia?” Basting asked. “Where I’ve invested a lot of my work in changing the environment is by using what I call creative engagement to change the dynamics of the care relationship in order to foster both community and relationship-building and a sense of individuality.”

Creative engagement defined

Creativity, by her definition, “is something new added to the world that has value,” she said. That definition encompasses both sanctioned forms of the arts — ballet, symphony, museums — as well as the creativity of everyday life. It allows room for both curators and ordinary people to value a creative endeavor.

“Engagement is a collaborative creation … or co-creation, co-learning as equals side by side,” she said. “It is with, not for. It is not entertainment,” said Basting, labeling entertainment a “really fascinating black hole” in care systems where musicians or others come to entertain or distract their listeners rather than co-create with them.

Creative engagement, she said, “opens a path to a stronger sense of self in community. It’s skill building; it develops a sense of purpose, legacy. It creates a sense of belongingness, a sense of normalcy.”

When control of rational language and narrative begin to fade, she said, “it opens up communication through emotional and symbolic communication that allows people to connect again.”

Basting said research has shown that a sense of purpose, social engagement and participation in leisure activities and community seem to lower the risk of dementia.

A 2006 study of elderly people who were engaged in theatre, choral music or visual arts groups led by professional artists found they not only gained skills and self esteem, but expanded their social networks.

These individuals had better health, fewer doctor’s visits and falls, less depression and loneliness, higher morale and higher activity levels — “Not from taking a pill, but from singing together, making art together or doing theatre together,” she said.

“I think still what stymies us is how do we dose that? How do we prescribe that? How do we train people to do that? How do we connect these two systems together in a way that equally values what they both bring to keep them sustainable and ongoing?” Basting asked.

“I really honestly believe that we’ve reached a threshold moment,” she said. “Cultural institutions are opening themselves. …They’re starting to realize that the solutions to this are broader than the medical field. The community has a responsibility,” she said, labeling it the “cultural cure.”

Evidence-based programs exist across every arts field: dance, poetry, choral music, writing, storytelling and theatre, she said.

“Artists have been realizing that they have this power.”

In other parts of the world, “That work in the arts is being woven into the health system through the acknowledgement that it is preventative in a way that I think we still have a little catching up to do,” she said.

Creative engagement can change the dynamics of care relationships, building both community and a sense of individuality, Basting said. She described a handful of creative arts initiatives involving people with dementia.

“This is where a lot of care is going to come — not from families even,” Basting said, but from people such as beauticians, librarians and postal workers being trained to create a normalcy and engagement to enrich the world around people with dementia.

She predicted a diagnosis no longer will mean being relegated to an isolated existence in a separate universe, but a universe in which people diagnosed with dementia are welcomed and helped to live as full a life as possible in the world in which they already live.

Arts initiatives

• “To Whom I May Concern” (www.towhomimayconcern.org), which began as a nursing student’s PhD dissertation, is structured in the form of a play. The student was involved in support groups for people with mild cognitive impairment and early stages of memory loss.

The dissertation was presented as a series of letters written “To Whom I May Concern,” written and presented by the people with whom she was working. “It’s particularly powerful for people with dementia,” Basting said, noting that once a diagnosis is made, “Your ability to self-represent becomes suspect. People start to turn to your caregiver to verify everything you’re saying.

“To have people with dementia onstage reading these letters, self-representing their own experiences, was very powerful for them,” she said.

• Basting’s project TimeSlips (www.timeslips.org) is an improvisational-based storytelling site that uses images as prompts. “It opens storytelling to everyone by replacing the pressure to remember with the encouragement or the freedom to imagine.”

Users can click on an image and make up a story using open-ended questions from the site, or tell their own story.

The storytelling can be done together with a family member who has dementia or users can click “invite” to email another person to tell the story together.

“We value the role of storyteller,” she said, noting the program promotes social capital. “It’s providing that valued role as an avenue for a person with memory loss or dementia to express who they are.”

It also can be used as a way for residents and staff at care facilities to play together and share an enjoyable experience.

• Many types of arts and cultural institutions are starting to open up their education programs to lifelong learning and creating programs for families with dementia. New York City’s Museum of Modern Art has adopted this, legitimizing the movement, she said.

• In Wisconsin, a foundation offered grants for cultural institutions to create and plan their own cultural programming for people with memory loss. The branded programming, called Spark! (www.alz.org/sewi/in_my_community_19695.asp) has art discussion, art creation and other programming for people with dementia and their family members, with separate programs for groups from care facilities.

• Artist Wing Young Huie (www.wingyounghuie.com) is a documentary photographer who not only has photographed families with Alzheimer’s disease but also has engaged clients in adult day care centers to take pictures with simple cameras.

• David Greenberger (www.duplexplanet.com) uses an approach that “derails” conversation. “He learns what conversations usually happen in a place then tries to turn them in a way that, like open ended questions, will invite response — unexpected response — from people,” Basting said. “Tell me about trouble … What’s more important: Coffee or ice cream? And why? … Tell me about Elvis,” are among his questions, she said.

In collaboration with musician Paul Cebar, he created a CD based on stories gathered through interviews with people with memory loss.

• SpareTyre (www.sparetyre.org) is a London-based theatre group that presents multi-sensory programming for residents of care facilities using music, light, bubbles and actors trained in what Basting called “effusive empathy.”

• Kairos Dance (www.kairosdance.org), based in Minneapolis, is one of many dance companies that have developed chair-based dancing programs to tell stories through motion. Its Dancing Heart program for residents of care facilities is done in collaboration with the University of Minnesota.

• Art Care Exchange (www.aging.uwm.edu/products) is a project offered in a Milwaukee adult day care program in which an artist is brought in and trained like a new employee, then teaches his or her techniques to staff who keep the endeavor going after the artist leaves. Hat making, banner making, storytelling, gardening, dance, poetry, painting and mixed media are among the creative efforts. “Because it’s an exchange, the staff takes it up and continues it, so now they have all these things embedded in their programming.”

• Songwriting Works (www.songwritingworks.org) is a collaborative music composition program in which a facilitator asks participants to help create a song on the spot.

• Alzheimer’s Poetry Project (www.alzpoetry.com) is a project that caters to a generation that grew up memorizing poems and making up their own poems.

Infiltrating a system

Most of the programs Basting cited measure impact by working with a small group of people, she said. “We’re looking at the individual impact: Is it helping their cognitive skill, is it helping the family relationship? Is it changing affect? Is it making the staff’s job easier?”

Introducing her latest project, she said, “The other thing the arts can do … especially arts that are based on improvisation … is that they can infiltrate a system and change it.”

The Penelope Project

(www.penelopeproject.wordpress.com) engaged the Milwaukee-based Luther Manor care facility in which 700 people live and 700 people work. The facility offers independent living, assisted living, skilled nursing and adult day programs.

The two-year project involved a theatre group, students and people involved at Luther Manor. After a year of planning, followed by weekly group creative discussions in all levels of care, participants presented a professional performance that was staged throughout the facility.

“It was extended. It was cumulative and progressive. The rule was that all of the activities had to be accessible to people with Alzheimer’s so that everyone could participate. It was co-created. There was a feeling of co-learning. It was rigorous art-making and rigorous evaluation,” she said of the project that included storytelling, poetry, movement and visual art pieces.

The project was based on the Odyssey, the Greek tale of the adventures of Odysseus. Instead of focusing on him, “We were fascinated by Penelope, who sat at home for 20 years waiting for this guy to come back,” Basting said.

The concept of waiting was particularly powerful in a place where the stereotypical belief is that people there are simply waiting to die.

The project was overlaid atop the day-to-day systems already in place in the operations of the facility. “The artists were going to come in, understand that world, and then just raise it up with a level of potential and meaning. It was going to become something slightly different than it had before with the hopes that people would see themselves and their surroundings differently than they ever had before.

“It was the audacious belief that you can grow,” Basting said. “When you work with kids in educational programming you do it over time so they can grow and develop skill and understanding. In long-term care and particularly for people with dementia, we develop one-off programs because we’re afraid or we don’t want to believe in the fact that they can learn and grow over time,” she said.

Basting’s lecture and a panel discussion featuring GSPH doctoral student Jason Flatt and Tresa Varner, curator of education and interpretation at the Andy Warhol Museum, are posted at www.publichealth.pitt.edu/lecturearchive.

—Kimberly K. Barlow