Inside an old bakery turned performing arts venue, people eat, sing and dance—a welcome reprieve from doctor’s offices and the toll of an incurable brain disease.
The Musical Memories Cafe in West Falls, New York, a hamlet 20 miles south of Buffalo, is a social gathering space for isolated older adults, caregivers and their loved ones. Many cafe regulars have Alzheimer’s and dementia. Listening to music stimulates their minds.
“They’ll sit together, and they’ll remember the verse of the song. They’ll sing every verse of the song. They’ll clap,” said Carolyn Panzica, executive director of nonprofit West Falls Center for the Arts, which has operated the memory cafe since 2018.
“For that hour, they get some of that old joy back.”
In New York, Alzheimer’s is a growing crisis. The state has the second highest prevalence of the disease in the United States, according to a study by the Alzheimer’s Association. In 2020, roughly 410,000 New Yorkers 65 or older had an Alzheimer’s diagnosis. That number is expected to grow by 12% by 2025. People of color, lower-income and rural communities have higher rates of Alzheimer’s and other dementia.
“These individuals are lost in time and place sometimes,” said Borna Bonakdarpour, a cognitive behavioral neurologist and associate professor of neurology at the Northwestern University Feinberg School of Medicine. “That by itself causes agitation and anxiety when they can’t place themselves.”
In 2022, Bonakdarpour co-authored a study examining a music-based intervention’s impact on caregivers and dementia patients.
Beyond the pall of disease, family caregivers of Alzheimer’s patients endure emotional and financial hardships that siphon off their energies and time.
“When they’re under distress, they can’t help the patient, it gets into this vicious circle,” Bonakdarpour said. “Family members, sometimes, they just give up their jobs to take care of their loved ones.”
Memory cafes can serve as refuges from the confines of home, both for the caregiver and patient. They provide social cohesion, peer support and access to health resources.
Houses of worship, arts venues and senior centers are among the places that host these gatherings. The model originated in the late 1990s by Dutch psychiatrist Bère Miesen, hoping to break the stigma associated with dementia. Recent studies show social isolation increases risk of dementia among older adults.
“Isolation can feed into dementia itself,” Bonakdarpour said.
Memory cafes are types of life enrichment activities, not therapeutic interventions or care facilities. They offer welcoming environments where people can play games, make art or enjoy music. More than 1,000 memory cafe sites operate in-person or virtually in the United States and other countries, according to AARP.
New York has 18 listed on the Memory Cafe Directory website, including the Syracuse Memory Cafe in DeWitt, and a senior center runs a memory cafe in Queensbury. Michigan has more than 10 listed, in places like Marquette, Lansing, Saline, Paw Paw, Clawson, Rochester, Ypsilanti and Clinton Township. The cafes are typically funded by grants, individual and corporate donations or religious institutions.
‘It’s familiar to them’
The spread of Alzheimer’s, the most common type of dementia, begins in the back of the brain. Neurons get damaged and some brain regions shrink.
However, regions within the front and midline area of the brain, where long-term memories are stored, and the cerebellum, the part of the nervous system responsible for processing rhythm, balance and other cognitive functions, are not touched by the disease until later stages.
Alzheimer’s patients can recognize songs from their younger years. That jolt from the past can soothe and reduce agitation or anxiety.
“They feel safer because it’s familiar to them,” Bonakdarpour said, noting music can be a way to communicate with patients emotionally if they become non-verbal.
Although considered safe, music can have negative side effects, Bonakdarpour said. Too much noise can make patients uncomfortable.
“Sensory overload itself is not a great idea. It has to be within a certain amount that is not overwhelming to people,” he said.
Musical nostalgia can also be triggering.
“Some songs can bring back bad memories for people,” he said. “Not everybody loves every instrument. Some people may have a bad experience with certain sounds or songs, so we need to know about that.”
Keeping loneliness at bay
At West Falls, live music is a big draw. The arts nonprofit has expanded its memory cafe offerings to the Amherst Senior Center in Buffalo and The Dale Association in Lockport. The three locations host hourlong cafe gatherings twice a month. Each gathering attracts 40 to 50 people, Panzica said. So far, she hasn’t fielded any complaints that the music is too tiring or overwhelming.
Talking with families guides how the nonprofit curates the concerts at the memory cafe. Beloved popular tunes from the 1950s, ’60s, ’70s, and ’80s dominate the set lists.
Happy and uplifting music is the common theme and expectation.
“It’s a joyous event and we want the music to reflect that,” Panzica said. “It can manage the stress of all involved.”
Local musicians serenade attendees and perform a range of genres, from jazz, blues and bluegrass to classical, Japanese and African drumming. There’s acoustic guitar and barbershop quartet harmonies. Cafe-goers also get a free hot meal and spend meaningful time together outside of a clinical setting.
Linda Gonzalez, a 75-year-old retiree from East Aurora, New York, read about the memory cafe in her local newspaper a few years ago. Her husband Luis is a former chemical engineer diagnosed with Alzheimer’s. Back then, Gonzalez cared for her husband, and his symptoms weren’t as severe. He could feed himself.
She started taking him to the cafe. They could relax and relish in some hospitality. The romantic memory still touches Gonzalez’s heart.
“He enjoyed it. He would smile,” she said.
Gonzalez left feeling refreshed.
These days, her husband, 83, lives in a nursing home. He can no longer carry on a conversation and stares. When she visits him, they communicate with their eyes, Gonzalez said. She knows his love is there.
Gonzalez still goes to the cafe, even without her husband by her side. She feels embraced by the other caregivers, who know how hard coping with the disease can be.
“You start talking to somebody and they’ll know exactly what you’re going through. And you can be a real support to one another,” she said. “It’s just a very positive space where people can feel accepted.”
As Alzheimer’s progresses, people may have trouble participating in conversations. They may struggle to describe objects. They may forget their family member’s name.
All of these symptoms make everyday activities difficult to accomplish and increase social isolation and a sense of loneliness, an epidemic befalling older Americans.
While driving to the cafe, Kristen Dixon said her grandmother usually doesn’t say a word. Her grandmother has dementia. She doesn’t have much social ability anymore. She can’t call her friends. She’s not able to make plans herself. She’ll forget she has a granddaughter.
“As soon as we pull in the driveway, she knows where we are,” said Dixon, a 40-year-old account manager for a medical device company from West Seneca, New York.
The cafe makes Dixon’s grandmother happy and comfortable. The music sparks her memory.
“It’s just a nice break from the other stuff. The difficult stuff,” Dixon said. “Some days you see a glimmer of hope. But then you remember, this isn’t going to be the norm. And so it’s a tough disease. It wears on you over time.”
When her grandmother, Jeanne Corby, steps inside the building, she will sing. The 86-year-old likes ’60s feel-good music and classic Willie Nelson. She’ll dance like she did as a young girl.
At the memory cafe, Dixon can have fun with her grandmother. They can create new memories, even if her grandmother won’t remember them. Her grandmother is chatty on the car ride home. She still remembers the songs.