Telling the story of Alzheimer's
The story is the message and the Alzheimer’s Association, Rhode Island Chapter was looking for stories as it launched a series of 21 meetings across the state Monday in an effort to underscore the effects of a disease that has no cure and, according to members of the state’s congressional delegation, threatens to financially cripple our healthcare system.
The first of those storytelling sessions was preceded by “Coffee with Congress” at the Warwick Public Library where Congressmen David Cicilline and James Langevin, and Senator Sheldon Whitehouse outlined funding programs to fight Alzheimer’s.
“Personal stories are an effective way to help policymakers understand how their work affects people. That’s where you come in as an advocate,” Donna McGowan, executive director of the state Alzheimer’s Association said in opening remarks.
There were personal accounts like that of former Warwick Representative Neil Corkery, who is enrolled in an experimental program and talked of the importance of the care he receives as a patient with Alzheimer’s. He lamented how the administration is focused on tax cuts and dismissed the importance of health care.
There were nods of agreement from the congressional delegation.
Colin Burns, a former Warwick resident and graduate of Hendricken, likewise had the congressional delegation’s attention. Burns, who is pursuing a doctor of nursing practice degree at URI, questioned what efforts are being taken to develop the workforce to provide geriatric care.
Cicilline vowed to get back to Burns with answers and Langevin, noting his dependence upon caregivers, said there needs to be incentives to get young people into geriatric care.
Yet it was the statistics that defined the magnitude and impact of the disease.
McGowan said that deaths from Alzheimer’s continue to rise, with data showing that the numbers of deaths have more than doubled between 2000 and 2015, an increase of 123 percent.
“What’s more, is that Alzheimer’s is the only leading cause of death in the U.S. that cannot be prevented, cured or even slowed,” she said.
“Alzheimer’s disease poses an increasingly dire threat to our nation’s fiscal future,” she said.
McGowan called the disease the most expensive in America, saying that total payments to care for individuals living with Alzheimer’s or other dementias is $277 billion, which includes an increase of nearly $20 billion from last year.
“Unless we move quickly to address this crisis and find better treatments for those who have it, these costs will grow swiftly in lock step with the numbers of those affected, and Alzheimer’s will increasingly overwhelm our healthcare system,” she said.
She said there are presently 23,000 Rhode Islanders living with Alzheimer’s disease.
Master of ceremonies Lt. Gov. Daniel McKee outlined legislation aimed at combating Alzheimer’s and the work going into updating Rhode Island’s State Plan. Stories and information gathered from the 21 town hall meetings will be integrated into a report to be delivered early next year to the General Assembly. The meetings are being held through Aug. 10.
“So when you think about the economic impact and statistics of this disease, our healthcare costs are rather enormous. This is an urgent health priority to end this disease. It is a burden on families and if it goes unnoticed it will crush our healthcare system,” said Congressman Cicilline.
Whitehouse offered a glimmer of hope.
He called the Rhode Island Alzheimer’s Association a real model for advocacy, adding, “bit by bit we are showing signs and there is a sense of optimism in Alzheimer’s research. The United States of America has the best clinical research capability in the world, bar none. To have that addressing this problem with that kind of research and support behind it, I think is really a cause for optimism,” he said.
The Alzheimer’s Association Rhode Island Chapter provides programs and services to people living with Alzheimer’s and their caregivers, including: a 24/7 Helpline (800.272.3900); peer and professionally led support groups; early-stage social engagement programs; educational programs both online and in person; safety services including MedicAlert® and Alzheimer’s Association Safe Return®; and healthcare professional training on Alzheimer’s disease.
“This disease is relentless, but so are we,” vowed McGowan.
(With reports from Marcus Prezioso)