Dementia patients and their loved ones reminisce, socialize at Arizona church’s memory café

[Episcopal News Service] When Shafeeka Brown’s husband, George Brown, was diagnosed with frontotemporal dementia in 2008, she scoured the internet for every possible treatment. Her research eventually led to her learning about memory cafés, which are stigma-free social gatherings for people with memory impairment and their caregivers.

Her husband, an aeronautical engineer, died in 2015 before a memory café opened in greater-Phoenix, Arizona. After his death, Brown turned her grief into action and continued learning about memory cafés. In early 2020, she decided to pitch the idea to the rector of her parish, St. Matthew’s Episcopal Church in Chandler, a Phoenix suburb. Then the COVID-19 pandemic hit and the café was put on hold. In January 2024, the memory café opened at St. Matthew’s, and now, nearly two years later, it has become a valuable resource for the Alzheimer’s and dementia community.

“At memory cafés, people with dementia and Alzheimer’s can express what they still have left inside them, and there’s usually a lot more that they still remember than they may realize. It’s wonderful,” Brown told Episcopal News Service. “In this nonjudgmental environment, we focus on what long-term memory is left, not what is lost.”

In 1997, Dr. Bère Miesen, a Dutch geriatric psychologist, started the first memory café at Leiden University in the Netherlands. The concept since has grown worldwide. U.S.-based Memory Café Alliance-affiliated programs can be found via a directory on the nonprofit Dementia Friendly America’s website.

At St. Matthew’s free, volunteer-run memory café, held on the first and third Friday of each month, those with memory impairment and their caregivers gather for conversation, live music, games, and arts and crafts. The interactive activities are curated to be both fun and help recall memories by stimulating the five senses.

Each memory café gathering begins with casual conversation. Participants are free to discuss whatever is on their mind. The discussions are sometimes serious but can also be lighthearted. Sometimes, they just want to share what activities they’ve been doing recently.

Volunteer musicians play instruments, usually guitar, and lead sing-along sessions playing music across genres and generations. When playing games like compound word puzzles, English idiom exercises and trivia, participants are welcome to blurt out answers and share any related memories they have. Trivia sessions will sometimes turn into conversations. Arts and crafts activities also vary each session.

And, like traditional cafés, St. Matthew’s memory café offers coffee, tea, healthy snacks and homemade baked goods.

Amy Trias, the memory café’s program coordinator, told ENS that the people with memory impairment and their caregivers benefit from having a designated time and space to socialize with others who share similar circumstances.

“The people who regularly come to the memory café always comment that they enjoy it and look forward to the next gathering,” said Trias, whose parents both had Alzheimer’s. “It brings me joy to see everyone smiling and singing and having fun.”

Trias said she gets many activity ideas from Golden Carers, an Australia-based website for therapists and caregivers. The website offers thousands of activity ideas for elderly people, including those with dementia.

The next memory café gathering, on Dec. 19, will be Christmas themed. Trias will begin the opening discussion asking participants about their favorite holiday memories and traditions. Participants will sing Christmas carols and play a read-aloud game. They also will paint and decorate pine cones to look like mini Christmas trees.

“We’ll name some scents associated with the holidays, like cinnamon and spruce, and get really creative,” Trias said. “This theme will be perfect to get everyone reminiscing and talking.”

Unlike dementia support groups, which focus on the caregivers and their experiences and challenges, memory cafés keep caregivers and loved ones together. 

“There’s definitely a need for both memory cafés and support groups,” Trias said.

Dementia is an umbrella term describing symptoms of memory and cognitive decline. It mostly affects elderly people. Prefrontal dementia causes cell loss in the brain’s frontal and temporal lobes, which changes behavior and language ability. Alzheimer’s disease, which kills brain cells over time and shrinks the brain, is the most common cause of dementia, according to the Mayo Clinic. Worldwide, at least 57 million people have dementia, and 10 million people are diagnosed yearly, according to the World Health Organization.

Dementia also causes moodiness, personality changes and social withdrawal, and leads to negative emotions surrounding memory loss.

“People with dementia are very, very sensitive to gestures and emotions. They feel everything and will react to the different tones of your voice,” Brown said. “That’s why we try to make sure they and their loved ones are happy and relaxed when they are at the memory café.”

Brown and Trias both said it’s “very easy” to start a memory café program because materials are generally free or low cost. The Memory Café Alliance and other organizations offer resources detailing how to start and operate a successful program.

Some other Episcopal churches also have memory café ministries, including St. David’s Church in Venetia, Pennsylvania; Trinity Church in Staunton, Virginia; St. Martin’s Church in Houston, Texas; St. Bartholomew’s Church in Estes Park, Colorado; and St. Anne’s Church in Lee’s Summit, Missouri.

Brown said she thinks her husband would have enjoyed participating in a memory café program had one existed nearby when he was still alive. Today, several exist in Phoenix and its suburbs.

“There’s no cure yet for dementia, but at least through the memory café you and your loved one can joke and laugh and create new and positive memories,” Brown said.

-Shireen Korkzan is a reporter and assistant editor for Episcopal News Service. She can be reached at skorkzan@episcopalchurch.org.