Kathleen Burke’s voice broke as she told U.S. Sen. John Walsh, D-Mont., the story of how Alzheimer’s disease has changed her life as a caregiver and the lives of both her parents.
Walsh, who was at the South Park Senior Center on Wednesday morning to conduct a field hearing of the Senate Special Committee on Aging, heard Burke tell about her parents’ 68th wedding anniversary, celebrated by the Alzheimer’s patients together at a nursing home where her mother was staying.
“Mom pushed Dad away when he bent over to kiss her goodbye, saying that her husband would not like that,” Burke said. “It was difficult for me to see, but probably worse for him since he would not talk about it.”
Other panelists described how Alzheimer’s and other brain disorders will affect more and more families in the coming years. George Carlson, director and professor at McLaughlin Research Institute, a biomedical research organization in Great Falls, said that five million Americans and about 25,000 Montanans have Alzheimer’s or related dementias, with an annual cost of about $100 billion.
If nothing changes, by 2050 as many as 16 million Americans will be affected, costing the economy $1.2 trillion annually. Currently the U.S. economy is about $17.3 trillion.
Walsh noted that about 48,000 Montanans care for someone with Alzheimer’s or other dementia. The Alzheimer’s Association estimates the value of Montanans’ unpaid care reached $677 million in 2013. Nearly two-thirds of those providing care are women, and about two-thirds of Alzheimer’s patients are women.
Carlson said increased Alzheimer’s research funding is sorely needed, since there are no therapies capable of even slowing Alzheimer’s effects. For every $28,000 the federal government spends on caring for patients with Alzheimer’s disease and related dementias, $100 goes to support research. “Research is at a pivotal point,” he said. “It is largely a matter of our elected representatives deciding that a cure is worth funding.”
When funding for medical research gets tight — as it is now — decision makers get more conservative about distributing funds, and as a result innovative ideas suffer, Carlson said.
“The money goes into paths that look promising, and something new and different but with no results to support it, it doesn’t get funded,” he said.
Patricia Coon, a Billings Clinic physician practicing geriatric medicine and co-chair of the Montana Alzheimer’s/Dementia Work Group, said Alzheimer’s must no longer be a silent, hidden disease. She called for creating “dementia-friendly” communities that “locally provide high quality coordinated care, services and programs” to patients as well as their families and caregivers.
The goal of the work group is to be able to prevent and effectively treat Alzheimer’s disease by 2025, she said. “As a physician who provides medical care for these individuals, I look forward to the day when I can offer effective preventative treatment options to my patients and their families,” she said.
Dr. Bruce Finke, an elder health consultant with the Indian Health Service, told Walsh he grew up as “a caregiver for my beloved grandfather.” He said IHS is working with “multiple partners” to improve care for people with dementia, including the Department of Veterans Affairs, which has developed an evidence-based program for caregivers called REACH, for Resources for Enhancing Alzheimer’s Caregiver Health. The IHS is building on VA work to test strategies for early recognition of dementia among family members and others, he said. “Increasing awareness and recognition of dementia in Indian Country starts with access to quality care and meaningful support for individuals with dementia and their caregivers in Tribal communities,” he said.
A fifth person scheduled to testify — Max Richtman, president and CEO of the National Committee to Preserve Social Security and Medicare — could not attend because of traveling difficulty, Walsh said.
In his prepared testimony, Richtman said annual Medicare spending on people with Alzheimer’s and related dementia is about $21,000, while it’s about $8,000 for those beneficiaries without dementia.
He recommended boosting Alzheimer’s research funding, encouraging states to expand their Medicaid programs under the Affordable Care Act, providing caregivers with Social Security credits — and boosting Social Security benefits rather than cutting them.
Near the end of the hearing, Walsh asked for a show of hands of people affected by a family member or close friend with Alzheimer’s or related dementia, and a majority of arms from the 50 or so people in attendance shot into the air.
“Sooner or later, we will all be affected,” he said. “I will work hard in the U.S. Senate in the time that I will be there to fight for money for research. I am confident we will move forward and make progress fighting this terrible disease.”
Walsh, who announced last week that he is pulling out of the Nov. 4 election following a New York Times article alleging he plagiarized a paper while studying at the Army War College, told reporters after the 1 hour, 7 minute hearing that he’s optimistic that he can help get legislation to care for veterans and better protect public lands — as well as research to help dementia patients — through the Senate before leaving office in January.
“We are losing 22 veterans a day to suicide,” said Walsh, himself a combat veteran, one of two in the Senate, the other being Sen. John McCain, R-Ariz. “Think about what it would mean for the nation to lose 22 (soldiers) each day to combat.” If that were the case, he said, the military would be putting “a lot more money” into everything from body armor to better equipment.
He said he feels “a sense of opportunity” to get bills passed during his last five months in the Senate and repeated comments he made Tuesday about “finishing strong” during the time he has left in Congress.
“Montanans are pretty frustrated that things aren’t getting done in Washington, D.C.,” he said. “I want to be a spark to bring people together.”