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,” Senator Capito related. The cruelty of the condition also afflicted her father, Governor Arch Moore Jr. and also 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, the Governor a year later.
“I decided I wanted to make a bigger difference,” Senator 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, Senator 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.”
Mike Crites, executive director of the Hardy County Committee on Aging, shared that “proper diagnosis is critical. There needs to be another, better system of diagnosing folks with cognitive issues.” Crites explained that “often people can ‘pull themselves together’ at the doctor’s office” and “answer basic questions and pass the test used for diagnosis.” At home, however, they may at times “not know what day it is or where they are.”
Senator Capito noted something similar, discussing how many suffering from the condition try to hide it from others. They, she said, “become very closed in” as the stages progress because they are “afraid to make a misstep.” This phenomenon could indicate a very large number of those suffering from it who escape diagnosis until the disease has progressed significantly.
Crites suggests that those suspected of having Alzheimer’s or dementia related diseases “be diagnosed in their home environment where they are more relaxed and comfortable.”
Agreeing with concerns about accurate diagnosis, Senator Capito stated of the bill that “this helps our primary care providers. It will give them better tools.” Advances in both technology and technique from research can help improve both care and outcomes. 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. Crites wishes to see more resources directed toward their support. Although West Virginia has Title III funds and the FAIR program for Alzheimer’s respite, costs can get in the way of providing that level of support.
“The need for respite care services is huge!” shared Crites. He went on to add that “here at HCCOA, we don’t receive enough funding to pay our respite care workers the pay they deserve.” Crites then described what kind of special person can fill that role, saying “caregivers must have compassion, empathy, and extra patience. It’s challenging and demanding as each patient is different and the care they need is different.”
The bill will expand support for the Alzheimer’s Association’s Project ECHO, which, 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 Senator 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 the Senator.
“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 go 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. Senator 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 Senator Capito has run for over a decade and will continue into the future. As Crites shared, the role of caregivers, especially unpaid family and/or friends, is a vital part of the overall chain of care. Steps going forward could include looking expanding efforts to support respite care, such as helping senior centers to become equipped to allow caregivers to bring loved ones in for a visit, but also 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.
Senator 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.
