ST. GEORGE — With its older population, Southern Utah is familiar with Alzheimer’s disease, whether it removes the memories and moments inside the minds of the area’s older population or the effect it has on family members who try to take care of them.
Despite the namesake of the disease, with Alois Alzheimer born 158 years ago this week, disease experts say there still is not enough data about the types of people who suffer from Alzheimer’s – data that could lead to better treatments and earlier interventions.
“There’s not been a lot of data on that. So if we can get good research on why the numbers are so high among certain populations, then it will help people out in the future,” said Jeremy Cunningham, public policy director for the Utah Chapter of the Alzheimer’s Association.
State and local leaders in the Alzheimer’s community say they need help, and they’re looking for it from the federal government. And the local congressman said he’s willing to do so.
Rep. Chris Stewart said he supports a bill before both houses of Congress that has been stuck in committees since last May. The ENACT Act of 2021 (U.S. House and Senate bills) would boost Alzheimer’s research, especially for specialized communities.
Stewart said it’s all about securing more data that will lead to early detection.
“If you can detect this earlier, there’s intervention,” Stewart told St. George News, adding that such interventions can make it more likely for Alzheimer’s patients to get preventative care earlier and also more likely that a person with the disease could be treated at home with family, rather than a sterile hospital room. “Families can have that early intervention to help them.”
The bills would direct the U.S. National Institute on Aging to increase research and clinical trials for Alzheimer’s disease and other dementias on specialized populations of the elderly, such as racial minorities and the LGBTQ+ community. And there would be funding to back it: $60 million for each of the next four years.
In the House, Rep. Lisa Blunt Rochester is the sponsor of the bill with Stewart’s fellow Utah-based congressman Rep. John Curtis as a co-sponsor. Sen. Ben Ray Lujan sponsors the Senate bill.
Ethnic, LGBTQ+ communities getting hit harder
Cunningham said there will be a 10% growth in individuals over the age of 65 within the next five to 10 years. And among that growth, Cunningham said people might be surprised which populations of those over 65 are more likely to suffer from Alzheimer’s.
“If you’re African-American, you’re two times more likely to get Alzheimer’s than a Caucasian person,” Cunningham said. “In the Latino community, it’s one and a half times more. Polynesian is one and a half times more. LBGT … it’s one and a half times more.”
And nobody truly knows why, Cunningham added. There are theories like less access to nutritious foods or a lack of access to health care.
Stewart said the money that the national government would spend is a case of paying a little now — or a lot later.
“The amount of money we spend on research on Alzheimer’s is relatively small. It doesn’t reflect at all the number of people that are impacted by it,” Stewart said. “We’re just trying to correct that.”
While Stewart supports and agrees with the Alzheimer’s Association as far as the ENACT Act is concerned, he is not as keen on another piece of the association’s wish list: A national caregiver plan.
Is a national plan a solution or a complication?
Lauren Willie, the southwest regional manager for the Alzheimer’s Association based in St. George, is eager for more research and data to be funded, adding, “The national caregiving plan is more encompassing of what resources we need.”
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As Alzheimer’s patients worsen, experts say a vital component is having someone there to take care of them full-time. More often than not, this is a family member and Cunningham said 70% of the time, a woman fills this role.
While there has been federal legislation over the last two decades to help caregivers, there is not a formal, national plan to govern caregivers for Alzheimer’s or any other disease. Those regulations are handled on a state and local basis.
Willie says a national plan might put more resources and focus on providing help for caregivers, many of whom are forced to give up work and income especially when a family member is involved.
“We are working closely with our many community partners in Southern Utah to identify gaps in care, resources, education and access,” Willie said. “As we identify and can prepare for these needs we will be able to increase resources and ensure our communities and caregivers get the care and support needed.”
Stewart said he isn’t against federal financial help for caregivers. But as far as an all-encompasing national plan covering caregivers, he said he is concerned that would usurp local and state plans.
“We don’t need a national plan so much as we need support from the federal government to the states to innovate and and perhaps some funding to help buy the support that they need for the local community,” Stewart said. “I wouldn’t want Washington D.C. to be the only resource for caregivers, and I would hope they could provide resources to the state and locallities as they best see fit.”
Stewart noted the difference between Southern Utah, with its older population, than the younger age bracket up north.
“St. George has got a different population and a different set of concerns about this that, say, maybe Logan where the population is younger,” Stewart said. “I think it’s better if we allow the states to determine as much as possible, the best allocation of those resources.”
At this point, there is not an all-encompassing national caregivers plan before either house of Congress, though there are bills that make up bits and pieces of those caregivers serve including Alzheimer’s, COVID-19, veterans and autism. All have both Republican and Democratic sponsors and none have advanced beyond committiee.
In 2018, the ball was set in motion for a national plan after a bill sponsored by Sen. Susan Collins, R-Maine, was passed by voice vote in both houses and signed by then-President Donald Trump. The RAISE Family Caregivers Act didn’t authorize a national plan, but tasked the U.S. Department of Health and Human Services with coming up with coming up with recommendations on what should be in a national plan, as well as state and local strategies.
The department released an initial report to Congress in September. Along with a recommendation to fund more research into caregivers’ tasks, it also recommended more nationwide standards and practices for caregivers and providing federal financial and workplace protections for caregivers. But that report has yet to result in legislation.
Under a 2000 update to the Older Americans Act of 1965, more federal grants were made available to states and localities to fund caregiver programs.
Cunningham said while Utah is one of the “leaders” in providing support for caregivers, it can’t go it alone. He said at the very least, caregivers need the stronger federal arm to keep caregivers from losing income or being punished in the workplace for taking care of a loved one with Alzheimer’s. And calling Stewart a “big supporter,” he said both sides of the political aisle can arrive at a solution.
“He’s being fiscally responsible, but working with us on research and supporting the work that we’re doing, because he knows that it will cost more in the future. It’s not a party issue. It really is not a party issue,” said Cunningham , noting he just had another birthday in his early 50s and would like to see a cure for Alzheimer’s before he reaches 65. “We have to find it. We don’t have a choice.”
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