Don Gasser’s home office in North Richland Hills is a tribute to a systematic hand and creative mind.
Acrylic paintings, many of trees, adorn the walls. Wooden models rest near antique clocks on shelves that nearly reach the ceiling. He’s built, painted or tinkered with nearly every item, a habit of craftsmanship he’s honed in the decade since his dementia diagnosis.
“I’m not intellectually compromised,” Gasser, 64, said. “I still think, I still read, I still paint. Those things all help me stay focused.”
For Gasser and his wife, Myra, life centers routine, socializing and helping others cope with a condition that affects millions of Americans but that’s often misunderstood. And because of a community of “dementia friendly” organizations in Fort Worth, they’ve been able to maintain that lifestyle even during the pandemic, which has disproportionately affected people with dementia.
“You can live your best life with dementia,” Myra Gasser said. “It’s just how you choose to fight it.”
What is dementia?
Dementia is an umbrella term, according to Dr. Tyson Garfield, a geriatrician and assistant professor at The University of North Texas Health Science Center. The word describes several different diseases that involve the deterioration of the brain, he said. Alzheimer’s disease is the most common form of dementia.
For a person to be diagnosed with dementia, changes in the brain must affect a cognitive domain like that person’s memory or ability to find and process words, among others, Garfield said. “Those changes have to interfere with our day-to-day life.”
If a person can no longer work, for example, or no longer grocery shop, or dial a telephone, or balance a checkbook because of those changes, that person could be diagnosed with dementia, he said.
For Gasser, the first signs happened in 2011. An electrical engineer by trade, he was starting to fall behind on his job at Abbott Laboratories in Irving. Prodded by his supervisor, he underwent multiple tests. Finally, after a four-hour cognitive exam, he learned his diagnosis — a kind of early-onset dementia that isn’t Alzheimer’s disease. He was only 54. (He and Myra are used to being the “young kids in the club,” he said.)
Researchers aren’t certain what causes dementia, Garfield said. The leading theory is, as someone ages, certain proteins in the brain pile up, either because they’re produced too quickly or removed too slowly. Age, then, is the greatest risk factor. A stroke, traumatic brain injury, or a specific gene can also increase a person’s risk of developing certain kinds of dementia, he said.
‘I’ve lost months or years with my loved one’
Sample resources for people with dementia and their caregivers:
- James L. West Center for Dementia Care
The center offers free education, both virtual and in-person, to any caregiver of someone living with dementia.
- Dementia Friendly Fort Worth
The organization offers a free Zoom session on weekday mornings with activities for people with dementia and their caregivers.
- Fort Worth Public Library
The library allows people to check out themed memory box kits as they would books to spur conversation among people living with dementia.
Dementia has no cure, but medicines and habits can slow its progression — habits the pandemic interrupted.
“Many people with dementia throughout the pandemic did very poorly,” Garfield said. “(They) had an acceleration of cognitive loss because they’re not interacting, or exercising social graces or practicing conversation, reading body language and things like that.”
Jaime Cobb, the vice president of dementia and caregiver education at the James L. West Center for Dementia Care, said she and her team saw a “very marked deterioration across the board on our residents.”
“It was not because they got COVID, but it was caused by COVID, if that makes sense — kind of that collateral damage that happened,” she said.
The physical environment of the residency program changed — providers donned masks and other personal protective equipment — and, for a time, family members and friends weren’t allowed to visit. “That’s confusing for somebody with dementia who doesn’t understand what’s going on, (who’s) not able to hold on to that information,” she said.
For some people, visiting a resident with dementia for the first time after social distancing restrictions were lifted was a gut-punch.
“Some of the families were like, ‘I’ve lost months or years with my loved one’ just because of the deterioration that happened because of that isolation and the change,” Cobb said. “And you know, that’s not fair to them. It’s not fair to anybody.”
Dementia compromises a person’s short-term memory first, Garfield said. As cognitive decline continues, a person with dementia may forget more and more memories, beginning with the most recent and working backward. “That’s why somebody may not recognize their children, but may recognize their siblings,” he said.
For people outside of a residential care facility, some of Fort Worth’s education programs and support groups for people with dementia also shut down, Cobb said: “So not only did the person with dementia become more isolated and withdrawn and didn’t have those support systems that they had, neither did the families.”
When her husband was first diagnosed, Myra Gasser had delved into dementia research. “I like to know the who, what, where and whys of these things,” she said. After 10 years, she said, she knows a “thimbleful.”
When the pandemic began, she looked around for something virtual. And she found it: a Zoom session for people with dementia and their caregivers, five days a week.
‘Activities for Persons Living at Home with Dementia’
Gail Snider knew from personal experience that caregivers would need resources when the pandemic began. She and her family had cared for her mother-in-law for 12 years after the woman’s dementia diagnosis.
“I didn’t know anything about dementia, really, before that happened,” she said. “But I had to find resources and navigate through that, and I realized families need that help.”
Her mother-in-law’s experience propelled Snider to invest in dementia-related resources and communities in Tarrant County. Now, she’s the executive director of Dementia Friendly Fort Worth, a local dementia education and awareness initiative.
Before the pandemic, Dementia Friendly Fort Worth specialized in certifying local organizations like the Amon Carter Museum of American Art and the Fort Worth Police Department as “age- and dementia-friendly,” Snider said. The designation indicates the organization has pledged to create environments that cater to people with dementia. Dozens of organizations both public and private have sought and acquired the designation.
Early in the pandemic, the certification process — and the education programs Dementia Friendly Fort Worth held in the community — came to a halt.
“And so we started putting our heads together: What can we do to continue our work and our mission when everybody’s stuck home?” she said.
Spurred by an offering of funds from The University of North Texas Health Science Center, Snider and her team decided to create a virtual activities program — for 30 minutes every morning, Monday through Friday.
The first offering happened over Zoom in late April 2020; more than a year-and-a-half later, the program is thriving — so much so that it may expand to offer another daily time slot, Snider said. Its beauty stems from a shared understanding among people who attend.
“It’s an atmosphere built for them that’s non-judgmental,” she said, “where they can express their ideas, ask questions and tell their stories without the judgment from somebody who would say, ‘You told that story five times today.’ ”
By now, the schedule is mostly routine. Monday is Frog Bingo, with volunteers from TCU’s Harris College of Nursing & Health Sciences. Wednesday is art day with the Amon Carter Museum of American Art. Friday is music day with Texas Winds Musical Outreach. Programming on Tuesday and Thursday shifts by the week but often involves mind games and chair exercises.
A less-recurring favorite is Cookie Conversations, where Snider facilitates a Zoom discussion while baking. Within days of the session, packs of her homemade cookies arrive in each participant’s mail. Not long ago, after a friendly debate about how people prefer their bananas, it was banana bread — some loaves with black walnuts and some with pecans.
The Gassers have been attending daily for more than a year. The group provides the camaraderie and routine the pandemic disrupted.
Don Gasser admits he gets “a little competitive” with the bingo. His own steady victories have earned him an art bingo game that he and Myra play regularly.
The game complements the Wednesday morning art program, one of Gasser’s favorites, as well as his own endeavors as an artist.
The act of painting requires a person to process the world around him — to “have a mental image that … you have to actively hold in your head while you replicate it on paper,” said Garfield, with The University of North Texas Health Science Center. “It’s not like a puzzle. There’s not an answer.”
Hobbies like painting not only stimulate the brain, but can put “your brain in an emotionally healthy space,” he said.
“Depression and anxiety run hand-in-hand with a diagnosis of dementia,” he said. Both mental health conditions take up active brain space and hamper a person’s ability to process.
Other tactile offerings, like the memory box kits newly available at the Fort Worth Public Library, can be similarly helpful, according to Jana Hill, adult services manager at the library.
The project, conceived before but interrupted by the pandemic, allows families to check out themed kits to spur conversation and trigger memory for a person with dementia. For example, the garden-themed kit includes hand tools, seed packets, a jar of dirt and a kit guide written by the staff at the James L. West Center for Dementia Care.
“It’s not just something that people can use for pleasure, for recreation, for leisure,” Hill said, “but it’s something that really can make a difference in a person’s quality of life and their family’s connection to them.”
The public library has received an age- and dementia-friendly designation. During the certification process, representatives from Dementia Friendly Fort Worth and, occasionally, AARP assessed each branch’s physical environment: whether the floors were too slippery, or the shelves too high, or the text on signage too small. The library managers also received training about what it’s like to have dementia and how to better serve people who do.
Hill is planning more programming for people with dementia this spring.
“Nobody really teaches you as an adult how to care for other adults,” Hill said. “There’s a lot of training about how to have meaningful conversations with your kids, but there’s not so much structure, so much support for having conversations as people age.”
The Gassers have made those conversations part of their “best life.” They’re especially attuned to other people diagnosed young. “We’ve been able to take them in and help them on their journey,” Myra Gasser said.
Don Gasser is careful not to preach, though. The one thing people with dementia have in common is that “every case is different.”
“What works for me doesn’t work for everybody else,” he said.
These days, what works is a routine of artwork, books, Zoom sessions and games played with Myra. The pandemic has merely complicated, not sullied, that world.
“We don’t meet everybody for lunch like we used to — those are the kinds of things that have changed,” Myra Gasser said. “But that’s not a hardship. We don’t mind being here. We like each other. We can be together.”
Alexis Allison is the health reporter at the Fort Worth Report. Her position is supported by a grant from Texas Health Resources. Contact her by email or via Twitter. At the Fort Worth Report, news decisions are made independently of our board members and financial supporters. Read more about our editorial independence policy here.