An East Texas town wants to revolutionize how the state cares for people living with memory loss

QUITMAN, Texas (AP) — Addy Lois Dunn’s memory became a concern after she began running red lights and forgetting well-worn routes. She would soon be diagnosed with dementia, and her family, including her son, Randy Dunn, would rally to her care.

That was more than 20 years ago. Addy is now gone. She died in February 2012 at 74.

Yet, her battle inspired Randy, who is now the mayor of Quitman, a small East Texas town. And he is part of a group on a multi-year quest to establish a new kind of care for Texans living with dementia and Alzheimer’s.

The project — a 54-bed hospital based on a Scandinavian health care model that provides residents with more independence — is waiting for crucial support from the state Legislature.

The city has already won a $6 million grant from the federal government. However, they can’t cash that check until the state agrees to match funds. Mayor Dunn had hoped the Legislature would act during the 2023 session, which included a record surplus in the state budget. Lawmakers did not oblige.

That makes this time leading up to the 2025 legislative session critical to Dunn and his partners.

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The Quitman group, which includes multiple members who have loved ones who died from memory loss diseases and health care professionals, see their work as putting Texas on the map for memory loss care.

“It’ll be a national model,” said Tom Mullins, a contractor for the University of Texas health system assisting with business development in East Texas.

A movement begins

Addy was lucky. She was able to stay home with her husband, Franklin, for the duration of her battle with dementia. And unlike many of the hundreds of thousands of Texans living with the disease, she had a village of friends to care for her, allowing her to roam freely on the family farm.

But it was still difficult for the family to care for her.

“For my mom, if we had had some of this training, it would have made it so much more pleasant for everyone,” Dunn said.

Addy’s situation is not the norm for Texans living with memory loss, Dunn said, a fact he learned after he was approached by other professionals in his town.

In 2020, Orval Lindsey, a member of the Wood County Hospital board, and Annette Simpkins, president of the Wood County Healthcare Foundation, met with Dunn and pitched him on the memory care idea. As mayor of Quitman, they said, he could take the project further by providing community support.

Options for memory care in East Texas — and across the U.S. — are limited by what families can afford. Even then, services may be limited to sedation and locked wards, as Lindsey learned when caring for his own family.

But Lindsey had seen high-end private care villages, a Scandinavian concept, that have begun to spring up across the world. Lindsey and Simpkins, among several others, thought the village could be replicated — and made accessible for low-income families — in East Texas.

Early estimates suggested the project would cost at least $60 million — a steep figure for a community of 2,301.

Quitman is an unassuming little community and an unlikely place for such a facility.

It sits about an hour north of Tyler, the nearest metropolitan area. But it is energetic for a small town. Cars bustle to and from the small businesses that pepper the town’s two square miles and leaders see growth in its future as bigger businesses also establish themselves in the area.

About 10% of Quitman residents live below the poverty line, and 6% of residents over 65 live in poverty. The East Texas region had a 16% poverty rate between 2015 and 2019, according to the most recent economic overview of the region by the University of Texas in Tyler.

Early in the process, the group conducted a needs assessment of a 45-mile radius that looked at demographics like age, health, financial feasibility and more.

“As we moved through each step, we gathered more detailed information, and that gave us confidence that what we’re doing here is on the right track,” said Mullins, who Dunn said has been instrumental in pushing the project forward.

The federal government agreed and awarded Quitman a $6 million grant. However, the grant is contingent on matching state funds. And despite lobbying from the Quitman community and a record surplus, the state Legislature has yet to act.

Dunn and others worked with state Sen. Bryan Hughes, a Republican who was born in Quitman and represents parts of East Texas, to write legislation to match the federal grant. The bill never advanced during the budget process.

Hughes did not respond to an interview request from The Texas Tribune. Dunn said he believes Hughes and state Rep. Cole Hefner, R-Mount Pleasant, support the project.

“Both of them have met with us multiple times and agree there is a huge need for this project,” Dunn said.

The federal grant, which was championed by U.S. Rep. Lance Gooden, R-Terrell, is available through the 2025 session, Dunn said. That gives the Legislature one more chance to act.

“It is vital that leaders prepare the state for the growing need for research on the prevention and treatment of brain-related diseases,” AARP Texas State-Federal Strategy Director Kathy Green said. “By funding research within Texas, leaders can ensure that Texans reap the benefits of new technologies and treatments.”

Budding inspiration

The group found inspiration in European dementia villages established by Dr. John Zeisel, an internationally known expert on dementia care and treatment.

Zeisel’s interest in dementia care was first piqued in the 1990s and grew after visiting a quiet dementia care neighborhood in the Netherlands where patients were given the freedom to pursue daily routines in a peaceful and less restrictive environment. This, he thought, should be the standard for care.

“We have to shift from the predominant despair narrative around dementia, which says, ‘The minute you get a diagnosis, it’s downhill from here’,” Zeisel said.

Dementia and Alzheimer’s are often confused as the same illness. But they are different.

Dementia is a progressive neurological disorder that affects memory, thinking, and behavior and is typically caused by damage to brain cells. Dementia is also often used as an overarching term that refers to a range of symptoms that affect cognitive abilities.

Alzheimer’s disease is a specific type of dementia and the most common, characterized by progressive memory loss and cognitive decline.

Other types of dementia exist, each with its distinct causes and characteristics.

The progression of dementia due to Alzheimer’s is gradual and may take years to reach the point where around-the-clock medical care is needed. Many people with dementia can continue to operate with a modicum of freedom in the world with moderate help.

Zeisel conducted a two-day training session for the Quitman group, which led to the current vision. In concept, the Quitman facility will house 54 people who can spend their days working on a farm, tending animals or a garden, taking walks and generally living life.

“These folks are still living. We need to create an environment that will allow them to still do things. A lot of them are still mobile,” Dunn said.

Family members can visit regularly. And the facility will offer training to medical professionals and students alike, a key component that would provide ongoing funding for the facility. A likely partner will be the University of Texas at Tyler and its medical school.

The plan also includes training for family and friends who are primary caregivers for people living with memory loss.

“For my mom, if we had had some of this training, it would have made it so much more pleasant for everyone,” Dunn said. “She wasn’t a violent person but still it would allow her to do more.”

Is this possible?

Quitman would be the first of its kind established in the U.S., Ziesel said.

Carmen Tilton, vice president of public policy at the Texas Assisted Living Association, is skeptical the care facility would lead to a dramatic shift in care. Even if the facility opens, Tilton said, the level of care would likely be difficult to replicate across the state due to the cost.

Community collaborative projects like the one in Quitman are phenomenal ideas, but most regions cannot replicate them as they require a certain level of buy-in and broad support, Tilton said.

“Every part of the ecosystem needs to be on the same page for something like this to work. And even when you do have it, it can be tough to sustain,” Tilton said.

Dementia villages won’t take off in Texas until there is a fundamental shift in how Medicare and Medicaid provide residential services, Tilton said. Medicare doesn’t cover assisted living services at all. Medicaid does, but only at a rate of $40 a day. That rate is expected to cover meals, housing, health care, support services, housekeeping and activities.

The cost of memory care varies depending on where someone lives in Texas. Families can expect to pay around $4,000 to $6,000 per month. The national average monthly cost for memory care facilities is around $7,500.

The group hopes to pay for it by partnerships with educational institutions, foundations and government grants.

Other dementia-type villages around the country have switched to only provide daytime residential facilities due to staffing shortages, limiting the effectiveness of these facilities.

This gulf between how state programs value holistic or residential care services like a dementia village seems to be an insurmountable hurdle in making this an option for all Texans and the country.

“Access to that kind of environment is going to be really, really limited to just those who have the very highest incomes,” Tilton said. “And we can’t make a system that only works for people in the absolute top income bracket.”

The Quitman team will continue to push for other forms of funding through grants, regional buy-in and fundraising.

“This town could be a community, an Alzheimer’s friendly community, where the restaurants and everybody in town would understand how Alzheimer’s works and be more accepting to them,” said Debbie Robinson, vice president of the Wood County Healthcare Foundation. “They would have a place, and not just be a person with Alzheimer’s locked in a closed hallway.”

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This story was originally published by The Texas Tribune and distributed through a partnership with The Associated Press.