Alzheimer’s disease

Lillian Zwilling ‘kibitzing’ with the director of a music video, done in partnership with UW Hollywood Badgers, a film club of university students.

The last thing Lillian Zwilling thought she would be was a music video star. It took her until age 90 to realize her 6:03 of fame.

Created by the UW Hollywood Badgers — a team of student filmmakers from the University of Wisconsin-Madison — Lillian’s video uses singer/songwriter Rachel Platten’s “Nothing Ever Happens if You Stay in Your Room” to tell her story as a resident of St. Mary’s Care Center on Madison’s southwest side.

In the video, Lillian spends a lot of time in her room trying to read, staring out the window or cuddling her large stuffed Alaskan husky. Meanwhile, fellow residents fill the common areas, socializing and pursuing activities.

After continued coaxing, Lillian eventually emerges, joining in the fun and even dancing a few steps with Bob, another resident, whom she rewards with a peck on the cheek.

“The video is called ‘Step Out of Your Room,’” explains Carmela Mulroe, director of activities and volunteers for the 170-bed skilled nursing rehab facility. “We did it as a (public service announcement) to get residents and families more involved in activities.”

The video is just one part of an extensive program at St. Mary’s that uses the arts — including painting, music, performance, and storytelling — to help offset the devastating effects of Alzheimer’s disease and other forms of dementia. Although it can’t physically reverse the disease’s progression, arts therapy can slow its characteristic social shutdown and improve sufferers’ lives in the moment, says Mulroe.

For people like Lillian, the arts can also tap unrecognized potential, giving them a renewed sense of purpose and self-worth at a time when many human faculties are failing.

Limited but promising research on art therapies

Alzheimer’s disease is “a terminal condition for which there is no known cure,” says Dr. Nathaniel Chin, a geriatric memory and dementia physician at the University of Wisconsin-Madison Hospitals and Clinics. Chin also serves as director of medical services for the Wisconsin Alzheimer’s Disease Research Center. “The neuron cells die over time and sufferers do not get better.

“A lot of people feel uncomfortable talking about this.”

Despite the dire outcome and only minimal scientific research to date, Chin admits that different forms of arts therapy can have a positive impact on people with Alzheimer’s, which comprises 60 to 80 percent of all dementia cases.

“Such activities can improve a person’s self-identity and self-worth,” Chin explains. “There also is an increased level of community support and the feeling from patients that they are being heard.”

A limited amount of clinical research has been done on music therapy, which first surfaced in the Alzheimer’s community decades ago. A recent study used a functional MRI to measure neural cell activity in Alzheimer’s patients. Those patients who received music therapy showed increased neural activity, a trend Chin says is similar to the way continued physical exercise maintains muscle flexibility and strength.

“This is very exciting because it means that participation can help keep the neurons working and the patient more active,” he explains. “At the very least, arts therapy helps Alzheimer’s patients express themselves and improves their cognitive function.”

Singing improves mood and recall

Stephanie Houston — an outreach specialist for the Wisconsin Alzheimer’s Institute who works with Milwaukee’s African-American community — has witnessed the positive effects of music therapy firsthand.

Houston’s work with the Amazing Grace Chorus, a group of about 20 Alzheimer’s patients and their family members, offers almost daily proof of the way music improves the mood and memory recall of sufferers. Chorus participation also gives family members a meaningful interaction with their loved ones who suffer from the disease.

“When we bring their voices together as one, it’s difficult to distinguish who does and who doesn’t have the disease,” Houston says. “It also helps us send the message out about the importance of early diagnosis and connecting to the Alzheimer’s community for support.”

Now in its sixth year, the Amazing Grace Chorus performs both sacred and secular music, using the facilities at the Milwaukee High School of the Arts at 2300 W. Highland Ave. for both practices and performances. Although predominantly African-American in makeup, “we try to make sure the chorus is open to everyone because the disease affects everyone,” Houston says. “It’s part of the goal of making Wisconsin dementia-capable, meaning being able to provide programs and resources that would help improve the quality of life of those living with Alzheimer’s and their caregivers.”

Painting and poetry

Art therapy, including painting and drawing, also can help Alzheimer’s sufferers express themselves and connect with family members in meaningful ways. Dr. Chin himself frequently paints with his father, who suffers from early onset Alzheimer’s.

“That’s why I am in the field I am in,” Chin explains. “When I paint with my father, we’re doing something together. We have more verbal interaction and feel calmer in the moment.”

Poetry can help as well.

Fox Valley educator Karla Huston — the newly named Wisconsin Poet Laureate — is serving the Alzheimer’s community through the Memory Cafe, a statewide outreach of the Alzheimer’s & Dementia Alliance of Wisconsin.

During monthly meetings of the cafe, people suffering from memory loss and their family members come together with others in similar circumstances to share ideas and camaraderie.

Although new to the program, Huston sees the value that poetry can bring to those with memory loss.

“Poetry goes straight to the memory and language center of the brain and lights those places up again,” Huston explains. “Poetry that rhymes helps trigger and activate the language center. To speak you have to breathe, and reciting poetry activates that process as well.”

‘Connecting through creativity’

University of Wisconsin-Milwaukee theater professor Anne Basting has devoted her entire career to helping elderly population members with memory loss cognitively function in ways that improve their lives. Her TimeSlips program is a large part of that.

TimeSlips sessions — generally facilitated by trained moderators at nursing homes and other care facilities — involve storytelling and story creation, techniques that tap the imagination without taxing failing memories. Finding a different word for something an Alzheimer’s sufferer recognizes but can’t name is a function of metaphor, Basting explains, and the creativity involved taps brain functions that may have been dormant for some time.

“You have to move away from the theater of memory to one of imagination,” says Basting. “Those with dementia are already in the realm of imagination, and added creativity helps them compensate for their losses.

“When you learn to connect through creativity, you create an emotional connection with Alzheimer’s sufferers,” Basting says. “You learn to be in the moment with people who live in the moment, connecting in a very beautiful way.”

Founded in 1998, TimeSlips now has accredited facilitators in 42 states and 12 countries.

Basting is speaking at the Alzheimer’s Association’s 31st annual Wisconsin State Conference May 7–9 at the Kalahari Resorts & Convention Center in Wisconsin Dells. Through a keynote session, “Creativity, Connection and Hope,” she hopes to introduce even more practitioners and families to the advantages of TimeSlips.

“The social role of storyteller is universally valued across different cultures,” Basting says. “To invite people with dementia into the storytelling role makes them feel valued, which is important since many of them are devalued people who lose their own sense of importance.”

TimeSlips is being used in 50 nursing homes throughout Wisconsin, including St. Mary’s Care Center in Madison. Mulroe — its director of activities and volunteers — is a trained facilitator.

During the hour-long TimeSlips sessions, Mulroe leads discussions using photos cut from magazines, asking the residents to jointly create backstories for the people and scenarios the photos show. Words and phrases are captured on a flipchart, then transcribed into a story mode that can then be used in a variety of ways.

“A story comes out of the process, and everyone involved feels as if their voices have been heard,” Mulroe says. “You can use the stories to create booklets or post to the TimeSlips website, but it’s all about the moment for us, too. It’s the moment that really matters.”

Mulroe and her group sometimes used the material to create plays, something in which video star Lillian was frequently involved up until March 2016, when she began to decline rapidly.

Lillian died in April 2016. But her family takes heart in the fact that, thanks to the video, Lillian is still there every day to remind new arrivals and longtime residents to step out of their rooms and take part in life.

Human and financial toll of Alzheimer’s

According to the Alzheimer’s Association, as many as 5.5 million Americans suffer from the disease, including 110,000 in Wisconsin. The state figure is estimated to rise to 130,000 by 2025, an 18 percent increase that roughly parallels the disease’s growth nationwide.

The most prevalent of four major forms of dementia, Alzheimer’s is a neurodegenerative disease that can directly cause the death of its sufferers or lead to the onset of other fatal conditions.

The cost of care for Alzheimer’s patients nationwide was almost $240 billion in 2016 and will likely rise to $1.1 trillion by mid-century.

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