A new federal law is poised to reshape care for an estimated 56,000 Arkansans -- almost 2 percent of the state's population -- who are living with Alzheimer's disease, advocates say.
The Building Our Largest Dementia Infrastructure for Alzheimer's Act, nicknamed the BOLD Act, was signed into law by President Donald Trump on New Year's Eve and is expected to create new resources across the country to fight Alzheimer's disease and dementia.
Among other provisions, it should create state "centers of excellence" that address Alzheimer's disease, expand research-based treatment and improve physician education to help with early detection and diagnosis, said David Cook, public policy manager for the Alzheimer's Association in Arkansas.
"More than anything, it will elevate Alzheimer's [disease] as a public health crisis and a real public health issue," Cook said. "We haven't had this large of an infrastructure bill, ever."
Cook said lawmakers will hammer out details to help clarify the law's funding and implementation, but he added that it was broadly supported by the Arkansas congressional delegation, especially Sen. John Boozman, R-Ark., who serves on the congressional task force on Alzheimer's disease.
"[This disease] is absolutely devastating to those who battle it and there is an urgent need to change the outlook for the future," Boozman said in a statement. "The BOLD Act is part of the solution to combating this crisis and giving hope to individuals living with Alzheimer's [disease] and the families whose loved ones have been robbed of their memories."
According to the Centers for Disease Control and Prevention, Alzheimer's disease is the sixth-leading cause of death, locally and nationwide. Arkansas falls within what some clinicians informally refer to as the "stroke belt," said Washington Regional Medical Center neuropsychologist Dr. Kristin Bosc.
The term describes a Southern region where poor diet and more sedentary lifestyles are thought to harm cognitive health.
But a familiar list of public health problems, such as a limited number of providers and few specialists such as neurologists in rural areas, have inhibited Alzheimer's disease treatment in Arkansas. Cook said area general practitioners sometimes hesitate to diagnose the condition, which once carried a stigma.
That stigma was connected to a misunderstanding of Alzheimer's disease as a mental illness, and didn't start to fade in earnest until former President Ronald Reagan's disclosure of his diagnosis, University of Arkansas for Medical Sciences behavioral neurologist and Walker Memory Center director Dr. Mark Pippenger said in remarks at a luncheon Tuesday.
The new law will provide a framework as advocates work with the Arkansas Department of Health and the Department of Human Services to rework the state's Alzheimer's disease plan, which Cook said hasn't been updated since 2011 and is in "dire need" of revision.
Polling shows that Alzheimer's disease has become the most-feared diagnosis among Americans, Bosc added. The progressive disease -- which can cause problems with memory, thinking, mood and behavior -- is something families worry about because it "steals the person from you."
She concurred that Alzheimer's disease is an encroaching public health issue, in part because of America's aging population and the caregiver toll of the disease. Alzheimer's disease and dementia affect as many as 177,000 caregivers in the state, according to figures from the Alzheimer's Association.
That caregiving contributes to the costliness of treatment. People with Alzheimer's disease require more time and attention from staffers in care facilities, such as nursing homes. They also are prone to hospitalizations, might wander away from home, have accidents or struggle to keep up with medications.
It becomes not just a health issue but a fiscal issue, Cook said. Medicaid costs for caring for people with Alzheimer's disease were $353 million last year and are expected to rise by more than 26 percent by 2025, a fact sheet from the Alzheimer's Association said.
That's why advocates have cheered increased federal attention to the condition, including $2.3 billion in funding earmarked for related research through the National Institutes of Health in fiscal 2019.
For people worried about whether they might get Alzheimer's disease, Pippenger said it's important to be aware of the difference between normal cognitive slowing and signs of dementia.
Typical age-related memory trouble can include temporarily failing to recall names or names of objects, as well as a "slowing-down of mental processes" that can include difficulty shifting attention from one thing to another.
With Alzheimer's disease, "you forget the name and it doesn't come back to you," he said. A person might forget how to complete basic tasks like writing a check, or what drugs to take throughout the day.
A person might also become more apathetic about activities. A son or daughter might say "Mom used to like to sew, and now she never goes near her sewing machine," Pippenger said.
In recent years, there has been a shift in Alzheimer's research toward studying prevention as well as treatment, especially as some drug trials have failed in their final phases, Bosc noted.
Large-scale studies in Europe and the United States have investigated lifestyle factors, following groups of people to figure out who gets Alzheimer's disease and who doesn't. Although more research is needed, early findings have suggested diet and exercise are meaningful in staving off the onset of illness.
"[It's thought that] how we live our lives, and the things that we do daily, really [does] make a difference in who develops Alzheimer's [disease] and who doesn't," she said. "If we don't prevent people from developing Alzheimer's [disease], our caregiver burden is going to just skyrocket, even more than it already has."
Some researchers still are looking at medications, with new trials focused on whether starting patients on medication earlier (perhaps even when they are just having a few symptoms or are pre-symptomatic), might slow loss of function. Clinicians also are identifying more genetic links to the illness, including three genes that are linked to early-onset Alzheimer's disease, Pippenger said.
Though the problem remains pressing, he said the mood in the field of Alzheimer's disease research is beginning to change as doctors and academics understand more about the illness and what might slow or prevent it.
"We've gone from this sense of futility," he said. "The tone has shifted to one of outright hopefulness."
A Section on 01/09/2019
Print Headline: New law ramps up fight on Alzheimer's, affects care for 56,000 Arkansans