By Stephen Smoot
Alzheimer’s Disease and other dementia-related conditions do not discriminate. The relentless assault of the disease on a person’s memory, identity, and, to a certain degree also on those who love and care for them, takes a significant toll.
Just ask United States Senator Shelley Moore Capito.
“My grandmother back in the day had what they’d now consider dementia,” Capito related. The cruelty of the condition also afflicted her father, Governor Arch Moore Jr., and her mother, Shelley Riley Moore. She related how Alzheimer’s took “my mother and father. It was really hard for us.”
The former West Virginia First Lady passed in 2014, and the Governor a year later.
“I decided I wanted to make a bigger difference,” Capito said. In a 2019 release, she also shared that “my personal experience with Alzheimer’s is what really drives my curiosity and my will to find a cure.”
A cure, or more research and support for those who care for those who have it, would have a powerful impact on the Mountain State. West Virginia Public Broadcasting a year ago shared a study revealing that approximately 10 percent of the state population suffers from some form of the disease.
At the time, Sharon Covert, executive director of the West Virginia chapter of the Alzheimer’s Association called the number “disturbing” because “we’re talking about people in the workforce or of working age and grandparents taking care of grandchildren.”
Last month, as part of a series of actions over the years aimed at boosting support for Alzheimer’s related care, Capito and Senator Amy Klochubar (D-MN) brought back to Congress “bipartisan legislation to bolster training for primary care providers so they can better diagnose Alzheimer’s and other dementia” related conditions.
The bill was run under the moniker “Accelerating Access to Dementia and Alzheimer’s Training Act.” The AADAPT Act, as its sponsors have called it, “will expand the successful Project ECHO program to provide this important training.” In West Virginia, she notes, that in too many areas “specialized care is often limited.”
As Capito describes, “This helps our primary care providers. It will give them better tools.” Those providers can use those tools for diagnosis, evaluation, and also, “where do you go from there” in terms of treating the disease, slowing its progress, and supporting those who care for the patient.
That includes, Capito shared, “11 million Americans delivering unpaid care” as family or friends of the patient.
The Alzheimer’s Association’s Project ECHO, according to its website, “connects multidisciplinary dementia care experts with health teams in a free continuing education series of interactive, care-based video conferencing sessions.”
“Unlike a typical webinar,” the website explained “the program enables content experts to mentor and train medical professionals about the diagnosis and care management.”
The bill sponsored by Capito and others would “amend the Public Service Act to expand the Project ECHO Grant Program, to allow for such program to disseminate knowledge and build capacity to address Alzheimer’s disease and other dementias, and for other purposes.” It would do so by amending the Public Service Health Act’s purview to include a program such as Project ECHO from a non profit organization.
Early diagnosis and thorough analysis of patients with these conditions is critical. “It’s interesting because all of the strains are a little bit different,” shared Capito. She went on to relate how many patients “become very closed in” as the stages progress because they are “afraid to make a misstep.”
“Hoppy Kerchaval’s mother had a battle with this,” she explained. Kerchaval for decades served as the voice of Metro News Talkline. “We did a whole hour on his show talking about this in a very personal way,” stated the Senator. He shared with her that “she’d say something mean to him,” but that is part of the disease as well, fluctuations in mood and behaviors rarely seen before.
“We got so much feedback,” she added, saying people would share that “oh gosh, that’s happened to me!” The senator also shared that she has joined with support groups. “We cried and cried,” she shared.
Other measures this year supported by West Virginia’s senior senator include an increase of $100 million for Alzheimer’s research. Other research funding boosts went to efforts addressing cancer, diabetes, maternal health, Lou Gehrig’s Disease, and others. This work came out of the Labor-Health and Human Services funding bill. Capito serves as chair of the relevant committee.
Some of the $100 million will go directly to research in West Virginia, but unknown yet how much. The same bill also deployed $32 million “for Administration for Community Living for the Alzheimer’s Disease Program, including $2 million for the Alzheimer’s Call Center.”
In the past five years, West Virginia University received seven major grants funding work on Alzheimer’s and dementia from the National Institute of Health.
The focus for Capito has run for more than a decade and will continue into the future. Steps going forward could include looking into supporting different ways to support respite care, such as helping senior centers to become equipped to allow caregivers to bring loved ones in for a visit, but furthermore so that the caregiver can get a short break. Other forms of respite could help for longer periods.
“You hunker down because coping is tough,” shared the senator, talking about the effect of full-time care on the caregivers.
Capito in the past promoted increased funding for research, legislation improving tools and techniques for early diagnosis, and also Medicare coverage of blood-based dementia screening tests.
