When Debbie Elkins’ husband Chuck began to show symptoms of impairment, even as a nurse, she couldn’t find words to describe the changes — let alone “dementia” or “neurodegenerative disorder.”
It took more than five years and multiple visits to medical specialists to get an accurate diagnosis: frontotemporal degeneration dementia.
To care for him, Elkins, of Putnam County, quit her job.
“I’m sometimes so exhausted, I feel like I’m cognitively impaired,” she said.
So, when the state commissioned a work group to come up with a plan on dementia in 2024, Elkins called everyone she could think of to be part of it.
At the end of March, the group’s co-chair stood before a committee of West Virginia lawmakers to present a recommendation. Sharon Covert, executive director of the state chapter of the Alzheimer’s Association, held up a copy of an older state dementia services plan and shook it in disgust.
“Nobody’s done anything with it for fifteen years,” she said. “And we’re not doing that again.”
Covert called on lawmakers in the House Health and Human Resources Committee to pass a bill creating a state dementia services director.
But because state officials and lawmakers didn’t follow through with the 2011 plan Covert referenced, a new official overseeing dementia services would have her work cut out for her.
Authors of the 2011 plan, the result of another state-commissioned work group, recommended state officials fund a training program for doctors, senior center workers and family members of those with dementia. They also recommended allocating more money toward in-home helpers for caregivers.
But according to senior centers, which provide some of those workers, West Virginia lawmakers’ funding hasn’t kept up with the need.
Family members and other loved ones who care for people with dementia often have to leave the workforce and experience declines in their own health. When they get breaks and in-home help, they’re more likely to stay healthy and provide better care.
During the group’s presentation, Del. Anitra Hamilton, D-Monongalia, asked about the cause of rising rates of dementia in the state. Covert pointed to the aging population and advances in medicine that lead to more accurate diagnoses.
Covert told her the Association had found 5,042 people with dementia in Monongalia, Hamilton’s county.
And as the committee chair called on more delegates to speak, Covert spat out the numbers of people with dementia in each of their counties before they could ask their questions.
3,657 in Putnam. 11,618 in Kanawha. 8,072 in Wayne.
The Alzheimer’s Association estimates 115,000 West Virginians 45 and over have dementia, an umbrella term including Alzheimer’s and other diseases. It estimates that about two to three loved ones, such as family members, provide round-the-clock care for each person.
“That’s a half million West Virginians,” Covert said. “Your people are suffering.”
Hoping to advocate for those at home, Jeanne Caldwell, a volunteer with the Alzheimer’s Association, testified at the meeting.
“I’ve lost four of the six women who most shaped my life to this horrid disease,” said Caldwell, of Huntington.
She was a part-time caregiver for both grandmothers and her aunt and a full-time caregiver for her mother.
“I don’t think I’ve ever felt as helpless and hopeless in my entire life, as do many others also in the state,” she said. “I am here today to be their voice.”
One step forward, a decade and a half later
The legislative session ends Saturday, and the bill to create a coordinator of services is nearing passage. Lawmakers had discussed allocating about $100,000 in the state budget to pay the director and a part-time assistant, but health officials said this week they would fund the position out of their existing budget.
Should the bill pass, the new officials could create a phone line and website for families to find out about help, track which areas are most in need and search for grant funding. The officials would also oversee and coordinate existing services.
But according to senior centers that offer some of those services, the officials would be attempting to coordinate services that don’t exist or don’t meet the need in some areas.
The Bureau of Senior Services oversees the state’s FAIR and Lighthouse programs.
Through the Bureau’s FAIR (Family Alzheimer’s In-Home Respite) program, caregivers get time to rest, attend to their own responsibilities, go to support groups or engage in other activities while state-funded workers take care of their loved ones.
According to Bureau Commissioner Dianna Graves, senior centers have reported 265 people on FAIR program waitlists through the Bureau’s official reporting program. She said that number doesn’t include waitlist figures not sent through the official reporting system, and she’s currently working with senior centers to ensure their numbers are accurate — she said some may not be removed from lists if they move to a nursing home or die.
She is a supporter of the bill but didn’t call for more in-home worker funding, saying she’s focused on agency efficiency.
“Let’s figure out what’s going wrong and make plans to make it better, then let’s let the Legislature devote funding to it,” she said.
Another of the Bureau’s programs, the Lighthouse program, isn’t dementia-specific but provides workers to seniors who need help with tasks like housekeeping and safely getting around their homes. Its waiting list is an estimated 1,705 people.
Center directors say state funding they receive isn’t enough to recruit and retain workers. Several said they receive $18 per worker hour, but some of that has to go to overhead like a nurse overseeing care, travel, taxes and workers compensation. So workers typically receive $10 to $12 an hour.
Berkeley County Senior Services Director Amy Orndoff said she is heavily reliant on fundraisers and donations. But she still loses staff to neighboring states. And about 30 people are on a waitlist for the Lighthouse program in her area.
“We can have staff that can go 10 minutes across the border into another state and make twice as much as what we’re able to pay,” she said.
Patients who meet qualifications for Medicaid are eligible for help from other programs through the state Department of Human Services, but those have strict income limits.
And as lawmakers are still hashing out a final budget, one proposal cuts more than $30 million in Medicaid waivers for that in-home care.
“If funding is not restored, the program could face reductions, impacting services for eligible individuals,” a department spokesperson wrote in an email, referencing the proposed cut.
“Learn from the mistakes of our past”
Elkins’ husband, Chuck, was a high school teacher and coach of 41 years. He loves kids, so she’s found him at the grocery store helping a family with young children load groceries.
She’s watched him take a platter of hamburger patties outside to grill, only to return with them still raw.
And she said it can take two hours to get on their way to the barber shop. Every five minutes, he’ll ask her where they’re going.
“But if you ask him about the island of Madagascar, he will launch into all that he knows about Madagascar,” she said.
As she’s cared for him, she’s taken on emotional, physical and financial burdens that she says constitute “neglect” of her own health — but the demands would strain anyone.
When a person develops dementia, their loved ones experience loss — the experience may not be a death, but they lose the version of the person they knew.
And as his disease has progressed, she’s gained 40 lbs, even though she often forgets to eat and frequently can’t sleep.
Elkins noted that with earlier diagnoses, doctors can identify proper treatment, and that can sometimes mean slowing disease progression.
“I don’t want somebody else to have to dig and search,” she said.
The 2011 plan had recommended more public education.
“Let’s learn from the mistakes of the past and appoint someone who is directly in charge of dementia services for the citizens of the state of West Virginia,” she said.