Memory cafés weren’t something Alice Shire knew much about in the earliest days of her husband Tom’s dementia diagnosis. The Marion resident knew one existed in town, somewhere in the waterfront area, and that it was connected to the Council on Aging, but not much more.
But when Tom’s health began to decline more seriously, Shire knew they needed support.
“I started asking questions and it hit me that he needs — we need — a group that understands,” she recalled. “So, we started coming.”
What she found was a place where Tom could be himself without judgement and she could enjoy time with people who understood her experiences.
Shire and her husband are among many regular Waterfront Memory Café participants which began at the Marion Music Hall in 2016 and is now held every Wednesday at the COA’s location in the Benjamin D. Cushing Community Center on Mill Street.
Everyone who comes is given the gift of acceptance, said Karen Gregory, Council on Aging director.
No one is asked for a diagnosis or questioned why they are there. And they’re free to participate in the day’s activity or not, fall asleep at the table, or even in one cupcake-decorating case, eat the activity.
“There’s no stigma here,” said Gregory. “That’s the whole point. We want people to still feel comfortable going out. We don’t want them to feel isolated.”
Carolyn Ziegler of Onset tried a monthly café environment before coming to Marion with her husband Gary. It didn’t provide the same camaraderie she found in Marion, she said.
“At first it was nice, but it was once a month and I realized I didn’t know anyone,” Ziegler said. “They did more things but it never gelled, so we stopped going.”
In Marion, she’s made friends.
“Because it’s weekly, we can develop relationships,” she said.
Shire, Ziegler, and two other care partners, Ann Bruno, and Christine Voss became such good friends, they began meeting on their own as an informal support group on Thursday mornings.
The women understand her when she shares her experiences, Shire said about the connection.
“When you’re at home, you’re thinking all of these thoughts and then I’ll call Christine or I’ll text her and I’ll say I lost an entire day Sunday because I thought it was Saturday. And she just says yeah….That’s OK. It’s OK,” she said.
Those connections are not unusual, according to Alzheimer’s Disease advocate Barbara Meehan, who lost her life partner to the disease in 2015 and has been supporting others ever since. There is a bond among the group and also an openness to accepting newcomers, she said.
“I think a lot has to do with the camaraderie, the friendships we’ve developed,” Meehan said, pointing to the relationships she has made in the group. “Patty, who’s 91, is without a doubt one of my dearest friends. She started coming here with her husband who passed away three years ago, and then she just said, ‘Can I still keep coming?’ And we said, ‘Yeah.’”
Each café starts with lunch and then moves to an activity space. At a recent November meeting, Linda Jacknovy, COA program coordinator, lead the day’s activity, which was decorating Hershey bars to look like snowmen.
Jacknovy started the group off with a list of announcements they call, Joys & Sorrows. It’s a relatively new addition to the routine that came about when a beloved member passed, Gregory said.
Announcements can be about new grandbabies, the loss of a loved one, birthdays or anything that participants want to share. This meeting starts with an update about a caregiver who is recovering from surgery and whose daughter came in her place.
For all of its benefits, memory cafés are not well known nationally.
“Massachusetts is one of two national hubs for Memory Cafés,” said Beth Soltzberg, a clinical social worker and director of the Jewish Family and Children’s Service Alzheimer’s/Related Dementias Family Support Program.
Massachusetts is lucky in that it has about 100 cafés, according to Soltzberg, who said the other hub is Wisconsin.
Cafés started in Holland with a clinical focus, but in the U.S., the emphasis has been on social benefits, Soltzberg said.
They’ve grown as a response to increasing numbers of people living with dementia, which, according to the Alzheimer’s Association, is an estimated 6.9 million Americans age 65 and older for Alzheimer’s dementia alone. And those numbers are growing.
Soltzberg has a number of advocacy goals around dementia that she’d like to make happen, but one of her top priorities is to increase the number of memory cafés. She is a lead advisor for a national strategic planning effort that is launching a new national Memory Café directory and other resources, to encourage the spread of cafés. The group wants to grow the current number of about 900 to 9,000.
She’s also an advocate for living well with dementia and reducing the stigma around it. “Stigma really comes from fear and it affects everything related to dementia,” she said.
It can have a negative impact on how people live with dementia, including by creating isolation.
“Every care partner feels a huge sense of isolation when dealing 24/7 with a loved one who has cognitive difficulties like dementia/brain disease,” said Voss. “Memory cafés offer a safe environment to share concerns (and) listen to ideas with others on the same path.”
Sometimes the isolation comes from friends or family who separate out of fear or uncertainty about how to help.
Ziegler and her husband experienced this when friends pulled away from them. “All of a sudden it hit me, we’re just not getting invited to places where we would have before,” she said. “So your walls just start getting closer. They close in.”
Others aren’t ready to share their health status, said Voss, and memory cafés provide a place of confidentiality.
“This is so important as many don’t want or are not ready to share their private lives with the local community and neighbors,” she said.
One of Soltzberg’s many roles includes running Dementia Friends Massachusetts, a public awareness program where people can be trained to lead one-hour interactive workshops about dementia in their communities. It’s one way to increase awareness about both the challenges and positive experiences that dementia brings.
Because joy can be present too, according to Soltzberg, who gave a TED Talk in 2019 on that topic.
“You don’t just feel off a cliff,” she said. “People still live lives of purpose and joy, but we don’t hear about that.”
Memory cafés can help balance the two sides of the equation around dementia as Bruno, Shire, Voss, and Ziegler have discovered.
“We have made such a connection here,” Shire said. “I needed the support. I need to be with people that are going through … a similar journey.”
“The best thing here is the people.”
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