One NoCo nonprofit shows people living with dementia that there’s still plenty of joy to be had in everyday life.
It’s a vibrant Sunday afternoon in Old Town, and Beaver’s Market is brimming with customers. Among them, an elderly woman pushes her cart through the aisles, looking at items but not grabbing anything. She stops at an endcap, rubbing her forehead, frowning. An employee who’s stocking shelves nearby notices her uncertainty. He sets down his box and walks over, slowly approaching from the front and looking her in the eye. “Hi, how can I help you?” he asks, speaking clearly.
The woman reaches into her pocket, cheeks reddening, and hands him a white business card. “I’m sorry. I can’t seem to remember where the spaghetti is,” she says.
He glances down at the card, which reads, Thank you for understanding. I am living with dementia, above the logo for the nonprofit Dementia Friendly Communities of Northern Colorado (DFC-NoCo). “I can help you. Let me show you,” he says, gesturing for the customer to follow. The two of them walk together and he points out the options; she happily chooses a box of penne.
Back stocking shelves, the employee feels proud. Even without the card, he knew how to help his customer, because of his training. Beaver’s was one of the first businesses in Fort Collins to undergo training by DFC-NoCo on how to help people living with dementia feel more comfortable in the community. It’s a skill set he’s used time and again with his patrons.
And it’s no wonder, given our aging population. In the United States, seven million Americans are living with dementia, and 65,000 reside in Colorado. This number is estimated to more than triple by 2050. Perhaps most important, says DFC-NoCo executive director Cyndy Luzinski, “Seventy percent of people living with dementia are in the community among us.” They are part of the fabric of our lives.
Luzinski, a nurse whose smile lights up a room, became interested in dementia—a term that refers to cognitive decline and includes Alzheimer’s disease and many other types—when her own dad was diagnosed. “It made me want to learn everything I could,” she says. She went to the U.K. and studied with Penny Garner, developer of the Contented Dementia approach, which is person-centered (i.e. seeing people receiving care and services as equal partners), and known for increasing well-being. The methodology resonated deeply, and it became Luzinski’s mission to share it with others, “because there’s so much money being spent on research for a cure, even though we don’t even know all the causes yet,” she says. “I feel like there’s very little spent on what we do in the meantime. How do we still help them live well?”
In 2014 Luzinski took the next step and founded DFC-NoCo, offering one of her favorite programs: Memory Cafés, co-led by staff member Andrea Scandrett, and are social gatherings for people living with dementia, plus their caregivers. Based on research that suggests social interaction may slow cognitive decline, the first Memory Café started as group of eight to 12 people meeting at Timberline Church, discussing prompts like, “I wonder if anyone had a memorable birthday as a kid.” It sparked storytelling in which no one was rushed to answer, and repeat stories were welcomed. Participants loved the experience, “because it helped them know they’re not alone,” says Luzinski, “and they still have joy to share together.” The Memory Cafés have multiplied: there are now three in Fort Collins, plus one each in Loveland, Windsor and Estes Park.
Another program, B Sharp Arts Engagement, is a collaborative effort and CSU research project studying cognition and mood. Since 2015, 30 couples per year—the person living with dementia plus their partner—have been given tickets to the Fort Collins Symphony Masterworks concerts, with extra social time at receptions before, during intermission and after the performance. Results have shown improved alertness, overall engagement and mood in participants, and Luzinski had the pleasure of watching one couple, married 70 years, at their first performance. “They were sitting in front of me, holding hands, keeping the beat,” she says. “And later said it was like soul travel—they were connected like they hadn’t been before.”
As Luzinski and her team spread their wings, they plan to continue training both caregivers and businesses like Beaver’s in person-centered techniques, expanding to include more restaurants, shops and senior care facilities, with hopes “to do 20 more business this year.” Plus, they’re now in doctor’s offices. In March 2018 they got a grant to hand out folders to patients being worked up for dementia with a collection of resources including everything from Larimer County’s Office on Aging to the Alzheimer’s Association helpline to a list of life-enrichment activities available.
Which is big step in a positive direction. “Doctors had been hesitant to give a diagnosis because they didn’t have any hope to give people,” she says. “But now there are tip sheets, resource lists.” Since DFC-NoCo started handing out the folders, referrals to the Alzheimer’s Association Colorado chapter have increased 274%, and doctor’s offices are continually calling and requesting more. Plus, the folders are collated by people living with dementia and their caregivers, so they’re making a difference and giving back. This brings their work full circle, says Luzinski, because “our thing is that no one walking the dementia journey has to walk alone.”