When I asked a family friend to recall the day of her mother’s diagnosis of Alzheimer’s disease, she said she remembered feeling afraid.
“Even later, I don’t think that we ever mentioned ‘Alzheimer’s,’” she told me. “We always said ‘memory issues’ — because it seemed too scary.”
Alzheimer’s creeps in slowly and steadily. It begins quietly, with misplaced keys or trouble finding words. And then it erases time backwards: grandchildren’s names, telephone numbers, addresses, anniversaries and weddings.
“It works in retrograde direction,” Kimberly Betts ’12 G ’17 said .
Betts, a third year medical student at the Geisel School of Medicine, became interested in studying the disease during her undergraduate years at the College.
After taking a medical school elective course on the disease taught by Robert Santulli, a physician at Dartmouth-Hitchcock Medical Center, Betts was inspired to reach out to people with memory loss issues in the Upper Valley community. Meanwhile, Santulli had been reading about “memory cafés.”
Founded in 1997 in the Netherlands, memory cafés strive to provide supportive, stigma-free gathering places for people with memory loss and their caregivers, families and friends. Alzheimer’s and dementia can be overwhelming and isolating to tackle alone, and these cafés created a sense of community.
In 2008, the first memory café in the United States opened up in New Mexico. Santulli and Betts were close behind, opening up their own program together near Dartmouth just a few years later.
As far as they know, their café was the second one in the U.S. — and there are now hundreds nationwide.
On the first Saturday of each month, the Upper Valley memory café provides breakfast, activities, relevant talks, performances and informal conversation for people suffering from memory loss and their caregivers. After the program’s inception, Betts started recruiting student volunteers from her sorority, Alpha Xi Delta. This tradition continues today.
Santulli even bought the sorority a gift to confirm their official partnership.
“Fun fact,” Betts said, laughing, “Dr. Santulli bought the doorbell on AXiD. No one ever heard him knocking, so he got the doorbell so he could drop by for meetings.”
Santulli emphasized the value of Memory Café’s intergenerational component. The role of the students is to engage the attendees in conversation and activities, he explained, but it’s also way to break through the sometimes stubborn or even impermeable Dartmouth bubble.
“It’s curious about Dartmouth, there are 5,000 people sitting here from all over the world who are really interesting and enjoyable and lively, and people in the community would love to get to know these students,” Santulli said.
Memory Café is also a valuable experiential learning environment for the students. The work pushes them to challenge stereotypical perceptions of elderly individuals with memory loss, and exposes them to something unfamiliar, students said.
Lauren Schulte ’16, a volunteer, recalled admiring the strength and resilience of older couples at Memory Café.
“This one couple would hold hands the entire time during Memory Café,” Schulte said. “All these couples stand with each other through this horrible disease and love each other and support each other, and that, to me, is really, really inspiring.”
Family members, too, spoke to the unbreakable bonds patients maintain with loved ones despite their deteriorating condition.
“There is still that bond of love that hasn’t changed,” the daughter of an Alzheimer’s patient agreed.
The organization also focuses on creating good vibes. The café switches the dialogue away from memory loss and towards preserved capabilities, interviewees said.
Kristina Mani ’16 , the undergraduate student coordinator for the program, said she has been to almost every café since her sophomore fall. Recalling one of her favorite memories, her eyes lit up when she told me about a Geisel hip-hop group’s performance for patients and their families.
“There are such funny videos of it — some of the guests who were pretty old were standing there and dancing and moving their hips,” Mani said.
Mani noted how the program uniquely brings people from all facets of the community together.
“It was a really cool moment to have students and Alzheimer’s patients and their caregivers and these Geisel students dancing hip-hop together,” Mani said.
Santulli said the program hopes to create this kind of humorous atmosphere. He called it “making lemonade” — the best way to do it is to stop focusing on the sour parts.
“We always try to have laughter,” Santulli said.
He recalled one month in particular, when the attendees brought in jokes to share. One of them, he said, had a particularly dirty joke. He refrained from telling me about it, but he said instances like that bring him a lot of joy and serve as reminders of why he runs the program.
“Watching these people and their spouses laughing, and having a good time, and doing that together, is very heartwarming,” Santulli said. “I’m happy to get up Saturday morning to see that.”
We think about Alzheimer’s and dementia as a diseases of loss, but it’s also important to celebrate what these individuals still have. Memory Café helps people capitalize on their existing abilities, Santulli said.
Memory Café is part of a series of programs run through Dartmouth-Hitchcock’s Aging Resource Center. Other programs include Perspectives, in which people with memory loss view student artwork together, and Recollections, a singing group composed of memory loss patients, their caregivers and Dartmouth students.
Both visual art and music are therapeutic because they stimulate emotional responses that are not too reliant on memory, and thus are not as affected by Alzheimer’s, Betts explained.
“There are people who are incredibly far along, but they can play the piano like they’re in a symphony,” Betts said.
Penelope Williams ’16, AXiD’s Memory Café chair, emphasized the importance of stress relief for caregivers as well.
“They work so hard day in and day out at an often taxing and thankless job, and Memory Café is something of a break for them,” Willliams says.
Almost every person I interviewed referred to the Memory Café community as a family. The program’s structure, which is more informal than a support group, allows time for patients, caregivers and students to develop genuine long-lasting relationships.
“We have people who drive over an hour to get to Memory Café,” Betts told me.
The program is equally formative for many of the student volunteers. Santulli said that although the volunteers get philanthropy hours for coming, most continue to attend the program long after they’ve exceeded their requirement.
“I truly enjoy talking to these people who are — what — like, 50 or 60 years older than me,” Mani reflected. “I think the most surprising thing that I’ve noticed, just recently, is how invested I am. This program really put a face to the disease for me.”
Last week, there was a memorial service for a man who had been coming to Memory Café since the program began. Santulli was asked to run the service, and several Memory Café regulars attended. One of the speeches was given by a Dartmouth ’13 who had known the man and his wife through the ’13’s volunteer work.
Up until the very end of his life, the man loved to sing, and each time his wife left the facility where he lived, they would say goodbye by singing a Bing Crosby song together.
“And so at the memorial ceremony, we all sang that song together, which was a nice way to send him off,” Betts says.
In the end, Memory Café spreads love and laughter and creating a sense of community, even if the symptoms of Alzheimer’s and dementia cannot be alleviated.
“Does it cure the disease? By no means.” Santulli said. “Does it slow it down drastically? No.”
But, the program does achieve something of equal importance: it cultivates happiness and improves quality of life.
“But, if you go to Memory Café today, it makes today a better day than it would’ve been without it,” Santulli said. “And that may be all you can do, but it’s plenty good enough.”
