NORFOLK, Va. (AP) — May Wells’ heart sank as she watched her husband leave their Williamsburg home in the back of a police car. Her husband, Ray, suffered from early onset Alzheimer’s disease, and his condition had deteriorated to the point that Wells called for help.
“He was having these delusions that there were people in the house who were going to kill us,” she said.
The police took Ray to the emergency room, which offered to refer him to a state-run psychiatric hospital in western Virginia. Wells said she had the resources to send Ray to a private memory care home — otherwise, he likely would have ended up in the state’s care.
“I don’t know what (else) people who don’t have the means to pay for it do,” she said.
The answer: Hundreds, suffering from Alzheimer’s disease or other forms of dementia, end up every year in state-run psychiatric hospitals that aren’t equipped to care for them. Being there can not only worsen their conditions, leading to lengthy stays, it can leave the mentally ill languishing on waiting lists — and taking up space in city jails. The families of those dementia patients, however, often have no where else to turn, as professional at-home or residential memory care is costly and in short supply.
“State mental hospitals are restorative by nature; they’re trying to restore people to a positive mentally healthy state,” state Sen. Monty Mason, D-Williamsburg, said. “To send someone to a restorative environment, when they have a diagnosis like dementia and can’t be restored, it just doesn’t make any sense.”
And it’s getting worse. The state’s psychiatric hospitals cared for 505 and 493 patients with dementia in fiscal years 2019 and 2020, respectively, according to a recent report from a state dementia services workgroup. Those figures for 2017 and 2018 were 377 and 439, respectively.
Suzanne Mayo is the director of community integration for the Virginia Department of Behavioral Health and Developmental Services, which oversees the state’s eight psychiatric hospitals. She said the hospitals are better equipped to treat mental health illnesses, such as depression or bipolar disorder — not those with dementia.
“Our hospitals really specialize in medication treatments,” she said, adding that non-pharmaceutical care, such as music or sensory therapy, is generally more effective at treating a dementia-related behavioral health crisis.
Emma Lowry, a clinical psychologist and the facility director of Piedmont Geriatric Hospital, a state-run psychiatric facility in Burkeville, said chaotic hospital settings can increase stress or depression in dementia patients, and cause their cognitive impairment to further decline.
“It can lead to longer stays in our settings because when they’re experiencing increased agitation, or confusion or behavioral issues, then discharge can become harder,” she said. “It becomes a vicious cycle where people can kind of get stuck in the system, which they never should have been in in the first place.”
Dementia patients, on average, stay about 229 days. That’s roughly 3 ½ times longer than someone with a mental illnesses, according to the workgroup, which convened last year to examine dementia-related hospitalizations at state facilities.
And the state’s psychiatric hospitals are already overcrowded, Mayo said: There’s no space to spare.
“Anytime we have a patient taking up a bed who could be better served elsewhere, that is a bed for someone else who may be waiting to get in,” she said.
While sending someone with dementia to a psychiatric hospital is problematic, the two preferred alternatives — keeping them at home or moving them into a residential memory care facility — both come with their own challenges.
Katie McDonough, director of programs for the local chapter of the Alzheimer’s Association, said many families initially think a residential memory care home might be a good solution. Then they see the exorbitant costs — and learn they’ll have to pay out of pocket.
“The majority of Americans live their lives believing that there will be some government program that provides for their loved one when they are older,” she said. “Then they realize that health care and long-term memory care are two different things.”
But McDonough said caring for someone with dementia at home can be isolating and overwhelming.
“It’s not rare to see a caregiver die before their loved one living with Alzheimer’s because of the lack of ability and time to pay attention to their own needs,” she said.
Families hoping to hire part or full-time health care providers for assistance also run into roadblocks.
There are “huge shortages” of health workers, for example, who offer in-home services, said George Worthington, dementia services coordinator for the Virginia Department of Aging and Rehabilitative Services.
The workgroup’s report offered a range of suggestions to help families provide care at home.
It advised the state to provide funding to expand educational and training programs for caregivers and others about how to prevent or deescalate a dementia-related crisis.
“Being a caregiver is a hard job; it’s definitely one of the hardest jobs out there,” said state Sen. Jen Kiggans, R-Virginia Beach, a geriatric nurse practitioner. “I would love to see us put some policies in place so we can be more supportive.”
The workgroup also recommended developing partnerships with colleges and creating “workforce pipelines” in middle and high schools to help recruit future dementia care providers and alleviate the shortage.
Mason, who represents a district with a high senior population, said he’s pushing to create a high-level state position that solely focuses on addressing the rising rates of seniors, which is leading to more cases of dementia.
“By 2035, there will be more people over 65 than children under 18,” Mason said. “So when it comes to state government, when it comes to policy, when it comes to programs, we need to right now be working to address what will be an extraordinarily large segment of our population.”
Wells, whose husband died of Alzheimer’s last year, said she now advocates on behalf of other families battling dementia.
She shared her story with legislators — including Mason — to raise awareness about the disease. And she hopes lawmakers will work in coming years to support caregivers, especially those from low-income households.
“It’s emotionally devastating, it’s physically devastating, and for many people, it is financially devastating,” Wells said. “(This disease) completely destroys a human being and the burden is enormous for those trying to manage that person’s life.”