How art can offer unique insight into dementia

Kunle Adewale/Courtesy

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In the earlier days of his Alzheimer’s, my great-grandfather became a thespian. Hamlet, Macbeth, Richard III and Lear had been stored away in the deep folds of his brain from many years ago, perhaps since college, and were now finally seeing the light of day.

He had received additional stage training throughout his career as a district judge. Over the years he had learned to project his voice, offer theatricality through his gestures and pronouncements, finely hone his oratory and acting skills through the many sentencings and arbitrations. Now, he stood before my grandmother in the living room in the mornings and she watched him perform, slowly learning that this, too, was an important part of his care.

My mother remembers him always having a creative flair, citing instances where he would weave elaborate stories of his childhood as she listened, enthralled. But now it seemed that his sudden penchant for Shakespeare was inextricably tied to his dementia; that somehow, as the past funneled through him and he slowly lost his agency, these passionate theatrical interpretations were one of his only ways of true self-expression.

I’ve only recently delved into more of the details in the story of my great-grandfather, who passed away in 2002. Before this, most of the facets of neurodegenerative diseases I’d known of — both in regard to research and patient care — were primarily medical in nature. Humanities and the sciences are often thought of as right and left brain respectively; almost two separate cultures, as the British scientist C.P. Snow once noted.

At UCSF’s Memory and Aging Center, however, the humanistic link between creativity and neurodegenerative diseases is being extensively explored through a variety of ongoing projects and efforts. The Memory and Aging Center is one of an emerging number of institutions that believes in the importance of the creation of art as it pertains to patients afflicted by dementia.

The Memory and Aging Center is one of an emerging number of institutions that believes in the importance of the creation of art as it pertains to patients afflicted by dementia.

One of these programs is the Hellman Visiting Artist Program, in which art is utilized not only in patient care, but also in telling the stories of patients through various creative media. Every year an artist is invited to the Memory and Aging Center for an exchange of ideas with researchers, during which they learn about neurodegenerative diseases and weave these concepts in their own art. This unique interaction across professions offers insights not easily gained elsewhere.

Caroline Prioleau, a writer and designer who manages the Hellman Program, appreciates the new ideas and inspiration that both artists and scientists may gain from each other during the program. She believes that in order to better understand a patient, a practitioner should have exposure to artful skills — such as empathic listening — that would allow their work to encompass and express more, and an artist can have an especially meaningful impact if artwork revolving around the topic of aging is grounded in scientific understanding.

“It gives (the artists) a perspective they didn’t get otherwise, because they’re hearing about the diseases and learning about the brain, and they’re sitting in conferences and they see what’s going on with (patients),” Prioleau explained. “But then on the flip side, (scientists) get changed by the artists to see the things that they don’t see. It’s a wonderful synergy.”

Past Hellman Artists include Josh Kornbluth, a theatrical monologist who worked on developing a monologue, feature film and video series on brain science and social justice; Jane Hirshfield, a poet and essayist who often incorporates science and the natural world into her poems; and Heidi Clare, a fiddler who worked on developing Brain Song Radio, an effort to harness the power of the music as a cognitive tool for the aging mind.

In 2016, the Hellman Artist in Residence was Voice of Witness, a nonprofit that uses narrative to uplift the stories of those without a voice. Voice of Witness began producing a series of oral histories about aging, dementia, art and caregivers called hear/say.

“We take sort of a literary approach. …  Our mission is to share these stories,” Prioleau, who is a principal on hear/say, explained. “We wanted to show that some (caregivers) take a lot of pride in their work, some laugh and have a good time with it. We also wanted to get the experience of the patients, that they’re still able to feel, express.”

Narratives around dementia often fail to address emotional and positive perspectives from patients and caregivers. Their experiences are complex and multifaceted, but are not well represented in media around and about dementia.

The hear/say project intends to give these unheard populations a platform to express these feelings. Voice of Witness plans to continue its work this year.

“We’re doing another hear/say project this summer to do more storytelling, but now we’re trying to incorporate it into a curriculum for every new class of international fellows that come in,” Prioleau said. The medicine was better when it was practiced artfully. There was a sense of listening to people in their last days and being there and being present with them, and all those confusing wild fluctuating emotions, and being okay with that.”

The Global Brain Health Institute, also part of the Memory and Aging Center, has another long-running arts program. Annually, Atlantic Fellows for Equity are chosen to learn more about dementia from researchers at UCSF and Trinity College Dublin. Among these fellows include visual artists, theater directors and creative writers, some of whom wish to explore helping dementia patients through practices such as therapeutic arts.

Kunle Adewale, a visual artist from Nigeria, was chosen to be an Atlantic Fellow in 2019. He is the founder of Tender Arts Nigeria, a nonprofit that focuses on therapeutic arts and civic engagement for children and youth. Recently he shifted his focus to older populations, starting by partnering with the Gabi Williams Alzheimer’s Foundation in Nigeria to visit nursing homes and care facilities, using art engagement in a therapeutic manner for seniors. As an Atlantic Fellow, he continued his work with older populations, benefitting from the multifaceted and diverse aspects of the program.

“You have all of these interdisciplinary people around you, and you’re in their midst,” Adewale said in an interview. “The experience for me so far has helped me to understand the language of science, to be able to integrate art into healthcare for emotional and social well-being.”

“The experience for me so far has helped me to understand the language of science, to be able to integrate art into healthcare for emotional and social well-being.” — Kunle Adewale

Adewale especially noted his participation in clinical rotations as a new and engaging experience that added to his knowledge of patients’ day-to-day lives. He hopes to eventually scale up his projects in Nigeria and globally, using his newfound insights to better understand patients’ emotions and reactions, as well as their family members’ and caregivers’ experiences.

Adewale is continuing his work with UCSF into this year. He has a gallery planned on April 30 at Gallery190 at the Memory and Aging Center. Its theme centers on “Uplifting Spirits,” something that Adewale sees as emblematic of the links between art, nature and aging. He continues to be inspired by the myriad of diverse talents in his fellowship cohort, and at how seemingly boundless their skills, ideas and insights are.

“It’s a great honor to be in the midst of global leaders who are changing the narrative around dementia across the world,” Adewale said. “I want to be able to spread joy, I want to be able to spread light because I think art is a very powerful way of connecting with people and transforming their experience in a meaningful way that brings happiness and joy.”

Allowing art to have a say in the research into neurodegenerative diseases and care of populations affected by these diseases has had a powerful impact on artists, practitioners and patients alike. Therapeutic arts can allow patients to improve their quality of life on their own terms, and help them feel more connected to the world. Narrative medicine is also an important tool for its ability to uplift people who are less heard, and to bring awareness to little-known facets of the lives of dementia patients and caregivers.

At the end of our interview, Adewale offered a personal reflection on what his work means to him, as an artist working to care for people with dementia and other cognitive impairments.

“I’m thinking of using art as a way of social connection,” he said. “One of the best things that can ever happen to an artist is to keep an open mind and allow (themselves) to be immersed in creating works inspired by people, culture, environment and experience.”

When my grandmother was caring for my great-grandfather, she had no way of knowing with certainty the potential impact or importance of allowing my great-grandfather to express himself creatively. But by offering him an audience in his last days and intrinsically understanding that life and wit still sparked inside him, she gave him a vital conduit to connect with the world outside of his own mind.

Contact Ankita Chatterjee at [email protected].