For thousands of Rhode Island families, the devastating effects of Alzheimer’s disease are all too familiar.
The disease also has the potential to bring about what U.S. Sen. Jack Reed called a “personal and economic disaster” for the Ocean State and the nation as a whole in the coming decades.
“The projected cost growth for Alzheimer’s treatment is staggering … The first impulse should be the human impulse, that these are people – our friends, our neighbors, our brothers and sisters – who should be cared for,” Reed said Monday morning at the Warwick Central Public Library. “But the second impulse should be, this is an economic disaster that’s gathering on the horizon. And if we don’t effectively deal with it now, it will be a staggering impact on all of us.”
Reed’s remarks came during a “Coffee with Congress” event hosted by the Alzheimer’s Association of Rhode Island, which was designed as an opportunity for advocates and members of the community to share their stories and receive updates on legislative efforts from the members of the state’s congressional delegation.
U.S. Sen. Sheldon Whitehouse and U.S. Reps. Jim Langevin and David Cicilline also took part in the forum, answering questions from audience members and discussing how various concerns related to research, treatment and caregiving are being approached in the nation’s capital.
“We deeply appreciate hearing the challenges you’re confronting, the things that you’re going through,” Langevin told the attendees. “It inspires us to continue to fight … As a delegation, we are in this fight for you and with you.”
Donna McGowan, executive director of the Alzheimer’s Association’s Rhode Island chapter, said Alzheimer’s is currently the fifth-leading cause of death in the state. At present, she said, there are approximately 23,000 Rhode Islanders known to have the disease.
Nationally, she said, costs related to the disease are estimated at $290 billion for 2019.
“Alzheimer’s disease poses and increasingly dire threat to our nation’s future,” she said. “Unless we move quickly to address the disease and find better treatments … Alzheimer’s will increasingly overwhelm our health care system.”
McGowan spoke of the association’s key legislative priorities, which include increasing funding for research through the National Institutes of Health; providing clinicians with additional education and resources through the HOPE for Alzheimer’s Act; increasing access to vital programs through the Younger Onset Alzheimer’s Disease Act; and supporting enhanced end-of-life care through the Palliative Care and Hospice Education and Training Act.
All four of the state’s congressional representatives, McGowan said, have been supportive of those priorities.
“These are our federal priorities as an organization, and it absolutely wonderful to have the support of our senators and congressmen who have been at the forefront in supporting these bills and leading the charge to put an end to this disease,” she said.
Lt. Gov. Dan McKee, who leads the state’s Alzheimer’s Executive Board, praised the four lawmakers for being “laser focused on bringing in federal resources to help us battle this disease.”
On the state level, he said, work was recently done to update the state’s plan to address Alzheimer’s – a document he described as a “blueprint for addressing all facets of this disease, including everything from research and treatment to caregiving and prevention.” The process included town hall meetings and public surveys, and resulted in a set of recommendations that have received the backing of the General Assembly.
“We’re going to have close to 8 to 10 percent of the state of Rhode Island impacted directly by Alzheimer’s in a very short period of time … Let’s keep the fight going and let’s find the cure,” he said.
Several people in attendance shared their personal stories and advocated for specific policy proposals or areas of need.
Karen Friend, a professor at Brown University, said she served as the caregiver for her late husband, who had early-onset Alzheimer’s and passed away roughly two years ago.
“I am so encouraged about what has been done at the state level and at the federal to help move [the fight against the disease] along,” she said.
Agnes Rawnsley of Johnston spoke of her experience caring for her brother, who has Down syndrome and dementia and was recently diagnosed with Alzheimer’s. The disease, she said, has turned a man who was previously a “social butterfly” into someone who is now deeply reticent to enter social settings.
“So I encourage everyone, yes, stand up, talk to everybody [about your experiences],” she said.
Diane D’Errico, director of development at the Trudeau Center, urged lawmakers to focus on improving the compensation for those who work as caregivers.
“[I] encourage the state to continue to support direct service providers who work with us, because the wages are so low and the turnover’s so high, because the work is so difficult,” she said.
Jamie Brooks, director of elder services at Child & Family RI
Spoke about costs of care, focused on the challenges families face in terms of affording care. For those below, at or slightly above the poverty line, she said, the cost of in-home care is typically too expensive. Meanwhile, assisted living placements are also unaffordable – and far too scarce.
“We have Alzheimer’s patients who are living alone who should not be living alone … We’re stuck between a rock and a hard place,” she said.
She added: “What are we doing in the state plan, what are we doing in Congress, to be able to combat this? We have folks who are suffering every single day.”
Cicilline said he and his legislative colleagues “have a responsibility to address this issue in a really thoughtful way, because it has the potential to overwhelm our entire system … It also has the potential to overwhelm families.” He spoke of a “historic” increase of $425 million in funding for research through NIH in 2019.
Reed said that defending the federal health care reform law approved under President Barack Obama is an essential component of effectively addressing the “practical aspects” of the fight against Alzheimer’s – specifically in terms of access to, and affordability of, care.
“It means we really have to dig in and fight even harder to protect the Affordable Care Act, and expand that, build on that,” he said. “That’s the only way we’re going to deal with these issues.”
Whitehouse praised McGowan and the Alzheimer’s Association, and said he believes the Palliative Care and Hospice Education and Training Act has a “pretty good change of passing” in Congress this year. He noted that is has already been approved in the House of Representatives, while a procedural issue in the Senate led to a delay in action. He said his colleague Sen. Tammy Baldwin of Wisconsin is focused on the legislation.
Whitehouse also said the Center for Medicare and Medicaid Innovation – part of the Centers for Medicare and Medicaid Services – is moving to update rules related to end-of-life care that have previously created obstacles to a more comprehensive approach.
As the process moves forward, he said, Rhode Island – thanks to existing partnerships and collaboration among various organizations – could soon have an opportunity to make enormous progress on the issue.
“We’ve got a real chance in the next couple of months to define an end-of-life care program here in Rhode Island that could be a true national model,” he said.
For all the challenges ahead, McGowan said it is an “exciting time” for Alzheimer’s advocates in Rhode Island. She spoke of the association’s partnership with the city of Cranston on a grant-funded Dementia Friendly Community initiative and of a similar program in Central Falls focused on bilingual outreach.
Eric Creamer, director of public policy for the association’s local chapter, said events like “Coffee with Congress” play a key role in the fight against Alzheimer’s.
“Your experience puts a face and heart behind needed legislation … It’s your stories that will be remembered long after ‘Coffee with Congress’ is over,” he told the attendees.