Susan Balkman recognized the early signs of Alzheimer’s disease about eight years ago, when she started forgetting words midsentence and getting lost driving once-familiar streets.
The diagnosis wasn’t easy to take in — especially when Balkman, now 69, was told she’d have to resign from her more than 40-year career as a psychologist.
“It’s a level of anxiety I’ve never had before,” she said, speaking of the disease’s effects — memory loss and cognitive impairment. “I call it ‘the fog,’ when you can’t anticipate what’s happening. … It’s a sense of feeling lost.”
At first, she said, she felt denial. She went through a period of depression.
But then, reluctantly, she started to attend Alzheimer’s Café, a monthly gathering for people with dementia, and everything changed.
Founded in Santa Fe by Alzheimer’s specialist and Denmark native Jytte Lokvig in 2008, Alzheimer’s Café grew out of a concept introduced more than a decade earlier in the Netherlands by a psychiatrist. That initiative, called Memory Café, was intended to raise awareness of dementia and offer a safe place for patients to socialize and engage in brain-stimulating activities, such as arts and crafts, music and games.
The concept had caught on quickly throughout Europe, but the Santa Fe gathering was the first official Memory Café in North America, according to the National Alzheimer’s Café Alliance.
In the last decade, however, hundreds of Alzheimer’s Cafés have emerged in cities across the U.S. as the number of patients with Alzheimer’s and other forms of dementia have steeply increased.
Lokvig, who has written several books on Alzheimer’s care, has served as a catalyst for the movement. One of her books even serves as a guide for how to start an Alzheimer’s Café.
Café participants in Santa Fe said the two-hour meeting, focused on snacking together and creating crafts, is an opportunity to express themselves — and for loved ones without the disease to remember “we still have a brain,” said Balkman, who began attending in 2014.
“The best way to help people living with dementia is to empower them as much as possible,” Lokvig said.
The idea, she said, is to interact with people who have varying degrees of memory loss, “not as people with dementia, but as whole people.”
During Lokvig’s monthly gathering, an assortment of snacks, painting supplies, collage materials and music sheets are spread across a table in a back room of the Santa Fe Children’s Museum. Participants are never forced to do anything, Lokvig said, and are instead simply given the freedom to explore.
The results, she said, are astounding: Some participants mix dynamic colors, painting abstract shapes onto paper plates, while others cut and glue words and photographs into complex designs. On some occasions, they even sing and dance.
What’s surprising to most people, Lokvig said, is that those who have forgotten how to speak often still remember how to sing familiar songs like “You Are My Sunshine” and Frank Sinatra classics, such as “Fly Me to the Moon,” as well as move to the rhythms.
“It’s extraordinary,” she said. “You can’t tell they have Alzheimer’s.”
Creativity, Balkman said, is a “lifeline” for those living with dementia.
“For so many people, once they do something creative, they’re functioning again,” she said. “With arts and music, their eyes light up. … They’re singing, they’re moving their bodies, they’re present.”
Susan Robinson said this is why Alzheimer’s Café is essential for her best friend of 20 years, Ann Anthony, 89, who has been living with a more advanced form of the disease for about three years.
“It gives her stuff to focus on that she’s good at, and the people don’t treat her any different than she’s been her whole life,” Robinson said.
Although Robinson said Anthony becomes frustrated by direct questions — “She doesn’t know the answers” — and sometimes doesn’t remember she has been to the gathering, “that doesn’t matter.”
“When Ann has a good time and has a good day,” Robinson said, “I feel like celebrating — and that happens every time she goes to Alzheimer’s Café.”
Robinson brings her African grey parrot, Cochiti, to every meeting for extra stimulus.
“Sometimes [the Café] is very jolly, and other times it’s very serious what we’re talking about,” Robinson said. “… But everyone there is in a position to be accepting of each other.”
Unfortunately, this lack of judgment isn’t the norm outside the meeting, Lokvig said.
“Alzheimer’s has the worst stigma attached to it,” and “when you’re living with dementia, your life it increasingly being controlled by other people,” she said.
According to statistics from the Alzheimer’s Association, an estimated 5.8 million Americans have some form of the disease, and 1 in 3 elderly people die from it.
While Balkman — who speaks with Lokvig at several Alzheimer’s-related events around the state — admits these numbers can make a person feel helpless, Alzheimer’s Café has given her hope. Here, she said, “people are treated with respect, honor and dignity. It makes a huge difference.”
Toward the end of a recent meeting, Lokvig showed the group a painted plate lined with two rows of an abstract pattern — one crimson and another in royal purple. At the top of the plate was a large blue shape, resembling a star.
“Did I make that?” Anthony asked, curiously.
“Yes, you did, Ann,” Lokvig said. “You’re very talented.”
Anthony’s eyes lit up and she broadly smiles.
“Her art has blossomed,” said Robinson, explaining that Anthony is a lifelong artist, a former French teacher and was a Peace Corps volunteer in South Africa.
Today, Anthony is the same person, Robinson said: “She’s still herself to me and always will be.”
“That person is still inside,” agreed Lokvig, “until the very last breath.”
If you go
What: Alzheimer’s Café in Santa Fe, a monthly gathering focused on creative stimulus for those living with Alzheimer’s or dementia. Snacks and craft supplies are provided and anyone is welcome to attend.
When: 2 to 4 p.m. the second Wednesday of every month
Where: Santa Fe Children’s Museum, 1050 Old Pecos Trail
Learn more: For more information on other local and regional Alzheimer’s Cafés, visit alzheimerscafe.com.