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Walking Dementia Journey Together
For all the unknowns about her father’s dementia journey, Lisa was certain about one thing. Being a caregiver 24/7 was isolating.
After five years, she missed socializing. She missed conversation.
But when she took a seat at Tempe’s Memory Café, a welcoming place for caregivers and people living with memory loss, all that changed.
A group of fellow caregivers embraced Lisa. Her father’s interests blossomed. Friendships grew. She rediscovered what had been missing in her caregiver life.
“It’s just so nice to have a conversation,” Lisa said. “The group is so supportive. You feel safe and you can share things…And you can laugh.”
“I love being able to call these people my friends,” she said.
Dementia friendly community
Tempe is Arizona’s first and only dementia friendly city, serving the community with a wide range of programs that benefit people with memory loss, caregivers, and the general public. The city is part of Dementia Friendly America, a national organization working to foster dementia friendly communities.
The Dementia Friendly Tempe (DFT) initiative launched in 2016, prompted by Mayor Mark Mitchell, whose mother has Alzheimer’s disease. Mitchell shares the caregiver role with his father, former U.S. Congressman Harry Mitchell.
In the past two years, DFT has touched hundreds of lives across a broad sector of the community. On April 7, the initiative will reach even more with its signature event, a free community summit that brings together caregivers, medical experts and advocacy organizations. The theme is "Tools for Building Resilient Caregivers," and Mayor Mitchell is a featured speaker.
The Saturday summit at the Pyle Adult Center, 655 E. Southern Ave. (next to the Tempe Public Library), offers an opportunity for adult children who normally work during the week to attend with their parents. Free respite care will be available; advance registration is requested. For details, visit Dementia Friendly Tempe.
Leading the way
Tempe is taking a multi-pronged approach to building a dementia friendly community. The effort brings together not only caregivers and people with dementia but other stakeholders – businesses, the faith community, healthcare and nonprofit organizations, and local government – to enhance quality of life and promote education about the disease.
The work involves: raising awareness about dementia and transforming attitudes; promoting meaningful participation in community life for caregivers and people with memory loss; and reaching those who are underserved.
Throughout the year, DFT programming runs the gamut, including:
• Dementia Friendly Presents, a free monthly lecture series at the Tempe Public Library focused on various topics related to memory loss and caregiving.
• Dementia Friends Arizona, an effort to change perceptions of dementia and engage others to help people living with memory loss. Sessions are offered in Tempe and around the state.
• Virtual dementia tours, a new partnership with Homewatch Caregivers that gives participants a virtual understanding of what people with memory loss experience in their daily lives.
Memory Café is the heart of Dementia Friendly Tempe, said Jane Gerlica, outreach program manager for DFT and Banner Alzheimer’s Institute. Held on Mondays at the library, Memory Café has grown from roughly six participants to as many as 40 each week. The café draws mostly husbands and wives but also adult children caring for a parent.
On a recent Monday, the café was brimming with activity. Some families arrived early to socialize, grabbing a cup of coffee and making the rounds talking to others they have come to know. By 10 a.m., the group was split between two rooms.
Participants who are living with memory loss sat together, engaged in storytelling that hit on topics as varied as baseball, vintage cars and ham radio. They talked about their childhoods, long-ago passions, and wartime experiences. Then they switched gears with an activity that prompted them to identify various items, something that spurred not only concentration but conversation with tablemates.
At the same time, their caregivers gathered together to talk through issues, seek advice, offer first-hand experience and, above all, support each other.
“This is the one time during the week they can get support, resources and just a physical and emotional break,” Gerlica said. “It’s like a lifeline.”
Memory Café volunteer Susie Peck knows this all too well. Her late husband Danny was diagnosed with early-onset dementia at age 56.
“Together you could put in a thimble what we knew about dementia,” she said.
Peck was thrust into the role of caregiver, something that would last for 11 years. About four years into the diagnosis, Peck joined a support group and it was a turning point for her.
“That made such a significant difference in our journey,” she said. “Each meeting was like reading a book. Everyone there represented different phases of dementia…It was just a good guided tour of what was to come and support with where you were now.”
After Peck’s husband passed away, she began a new journey to re-engage with the world. Prompted by her daughter, Peck took a volunteer shift at Memory Café.
“After just that one session, I was hooked,” she said. “People were asking the very questions that I had when I began. I realized that I actually had some answers or suggestions for some of them.”
That was two years ago. Now Peck spends Mondays welcoming families and helping facilitate the caregiver group. Members turn to her for any number of issues - what to do when a loved one stops brushing his teeth, how to keep anger at bay, when to turn over the caregiving role to someone else.
“It’s just raw, courageous support every week,” she said.
Lisa “fell in love” with Memory Café during her first visit. She sings Peck’s praises in leading the group, offering real-life experiences, positive reinforcement and support. But the benefits of Memory Café stretch well beyond the Monday gatherings.
Lisa has noticed that her father more easily engages in conversation, rather than relying on her to answer questions. After seeing his positive response to the cafe, they discussed trying another activity and now he plays pool three times a week while she enjoys downtime.
Lisa and her father also joined a group that regularly gets together for lunch and a Scottsdale art program designed for people with dementia and their caregivers. To their surprise, the program brings out an artistic side Lisa’s father never knew he had.
“It (Memory Café) just really opened the door for us to do a lot of things as father and daughter instead of caregiver and patient,” Lisa said.
For more information about Tempe's dementia initiative or to register for the annual summit April 7, visit Dementia Friendly Tempe.