Thirteen hundred Alzheimer’s advocates washed Capitol Hill in purple on March 29, sharing their personal experiences with the disease and speaking up for increased research funding and improved access to care and support. On Hill Day, part of the 2017 Alzheimer’s Association Advocacy Forum, advocates from all 50 states met with elected officials to urge them to make Alzheimer’s a national priority.
Alzheimer’s is the most expensive disease in the country, costing the nation an estimated $259 billion in 2017. As the population ages, these costs will only increase — and a method of treatment must be uncovered in order to slow the financial and emotional toll the disease takes on people living with it and their families. Congress has recently provided additional funding for Alzheimer’s research at the National Institutes of Health (NIH), but the commitment continues to fall far short of the amount experts say is needed. The Alzheimer’s Association and its advocates are asking Congress to increase funding for Alzheimer’s research by at least an additional $414 million in fiscal year 2018.
With that goal in mind, Carol and Gary Hankins from Newberg, Oregon, awaited a meeting with Sen. Ron Wyden (D-Ore.) and his staff. Carol’s mom died of Alzheimer’s, and her father was recently diagnosed with dementia. Her work as a volunteer long-term care ombudsman, and Gary’s as a psychologist, has heightened their awareness of the myriad challenges surrounding the disease. “Just being here is so inspiring,” said Gary. “We can’t wait to get back home to continue these efforts.”
Sherry Schwarz from McKinney, Texas, has six relatives with Alzheimer’s, and her husband recently died from the disease. Clad in a purple cowboy hat, Schwarz emphasized the importance of participating in Hill Day.
“I do this to honor my husband,” she said. “We have to be a voice for those who longer have one. I can’t imagine not coming to Hill Day. It’s so important to share your story.”
Schwarz was joined by Charles Assiff, a caregiver who has attended the Advocacy Forum for 13 consecutive years. They spoke to staff in the office of Sen. John Cornyn (R-Texas) about their Alzheimer’s experiences and the compelling statistics behind their request for an increased federal commitment to research.
“It was a really positive meeting, and the staff member we met with was very knowledgeable,” said Assiff. “He not only listened to our stories, he listened to our asks.”
Cindy Harris from Soldotna, Alaska, met with Sen. Lisa Murkowski (R-Alaska). The senator remembered Cindy’s personal story about losing her mother and aunts to the disease from Cindy’s visit during the Forum last year.
“I know it’s Alzheimer’s Day when I see purple in the hallways!” said Murkowski as she entered the room.
Harris, who shared caregiving responsibilities with her siblings until her mother living with Alzheimer’s entered a care facility, requested Murkowski’s support for the Palliative Care and Hospice Education and Training Act (PCHETA). Nearly half of all people with Alzheimer’s and other dementias are in hospice care at the time of their death; however, less than half of surveyed nursing homes have a palliative care program. PCHETA would increase palliative care and hospice training for health care professionals, launch a national campaign to inform patients and families about the benefits of palliative care, and enhance research on improving palliative care delivery.
Murkowski shared her concerns about adequate caregiver support, especially in rural areas of her state. “Where’s the help with respite care?” she asked. “Where’s the help for those who have ended their careers to be caregivers? I want to push to look at that.”
First-time Forum attendee Edith Crawford of Des Moines, Iowa, was elated and inspired by her meeting with Rep. David Young (R-Iowa). Crawford cared for her mother for 20 years and is now a professional caregiver. She found Young to be compassionate and receptive, which only added to her Forum experience.
“For anyone who hasn’t attended the Forum before, I’d say, ‘Give it a try. You’ll be hooked,’” Crawford said. “It was so much more than I expected.”
Many Association advocates concluded their day by attending a Senate Special Committee on Aging Hearing, “The Arc of Alzheimer’s: From Preventing Cognitive Decline in Americans to Assuring Quality Care for those Living with the Disease.”
Chairwoman Sen. Susan Collins (R-Maine) began the annual hearing by welcoming advocates and renewing her commitment to the cause. “It’s always so inspiring to sit here and look out at the sea of purple,” she said. “But it’s also a reminder that this terrible disease has affected each and every one of you in some way.”
Collins also spoke about advances made in the fight — and how far there still is to go, calling for bipartisan support of the issue.
“We have come a long way in advancing research through more robust funding, yet experts have calculated that we need $2 billion a year in research funding to achieve our goal of preventing and treating Alzheimer’s by 2025,” Collins said. “We certainly cannot afford to go backwards at a time of such great urgency and progress.”
Ranking Member Sen. Bob Casey (D-Pa.) reinforced Collins’ thoughts. “Despite our progress, our work is far from over, and in some ways, it is just beginning,” he said. “Funding is critical. We can’t look at the faces in the audience who come here year after year and not insist that more has to be done.”
Collins and Casey were joined by Sens. Richard Blumenthal (D-Conn.), Catherine Cortez Masto (D-Nev.), Joe Donnelly (D-Ind.), Deb Fischer (R-Neb.), Kirsten Gillibrand (D-N.Y.), Thom Tillis (R-N.C.) and Elizabeth Warren (D-Mass.).
The panel first heard testimony from journalist, activist and author Maria Shriver, whose father, Sargent Shriver, died of Alzheimer’s disease. She recalled testifying about Alzheimer’s in front of a senate panel eight years prior — and how she returned to address the devastating disease.
“Two years after I testified, my father died of Alzheimer’s disease,” Shriver said. “And now, I’m back. Back again to testify — and back again to focus your brains on this killer ravaging brains and families across this country.”
Shriver emphatically urged the senators to continue their commitment to the fight to end Alzheimer’s through increased research funding and the prioritization of care and support for all those affected.
“We must continue to prioritize investments in scientific research to find a disease modifying treatment and, one day, a cure,” Shriver said. “We must support caregivers of those living with Alzheimer’s and provide them with the resources they need to provide care for their loved ones. And we must ensure there is a well-trained workforce ready to provide quality care to the increasing number of people living with Alzheimer’s and other dementias who will need these services.”
The hearing also included testimony from a number of experts on the disease both personally and professionally: Phyllis Gallagher, Alzheimer’s Association advocate and caregiver for her husband; Dr. Chris Callahan, director of the Indiana University Center for Aging Research; and Kristine Yaffe, M.D., professor of Psychiatry, Neurology and Epidemiology and the Roy and Marie Scola Endowed Chair and Vice Chair of Research in Psychiatry at the University of California, San Francisco.