Research on Alzheimer’s disease has come a long way since Ronald and Nancy Reagan went public with the former president’s diagnosis two decades ago, researchers and advocates say.
And they say that Nancy Reagan in particular was a forceful advocate for more spending on research and more awareness of how the disease affects family members.
President Reagan publicly announced he had Alzheimer’s in 1994, giving the disease a prominent face. Until he died a decade later, Nancy Reagan was his primary caregiver. In the rare times she left his side, it was for Alzheimer’s-related causes.
“That was a really big moment,” said Maria Carrillo, chief science officer at the Alzheimer’s Association, an advocacy and voluntary health organization based in Chicago. “It translated into the beginning of an increased awareness and funding for research.”Nancy Reagan, who died Sunday in California at the age of 94, became a powerful advocate for embryonic stem-cell research as a way to find a cure for Alzheimer’s.
“Stem cells have become an important arsenal for many diseases,” Carrillo said in an interview.
Donna Wilcock, the Sweeney-Nelms professor in Alzheimer’s research at the University of Kentucky’s Sanders-Brown Center on Aging, called it the “Reagan effect.”
“When I came into the field, very little research resources were being put into Alzheimer’s disease,” said Wilcock, who’s researched the disease for 17 years. “The awareness of the disease and the push to provide significant resources for research and care really started with Reagan.”
The awareness of the disease and the push to provide significant resources for research and care really started with Reagan.
Donna Wilcock, Alzheimer’s researcher at the University of Kentucky
The University of Kentucky’s Alzheimer’s Disease Center was one of the first 10 to receive funding from the National Institutes of Health in 1985. Now there are 29 such centers.
The centers preserve brain tissue from donors to study Alzheimer’s. They also perform clinical trials and collect data and share it with other researchers around the country.
The University of Kentucky’s center is tracking hundreds of healthy, aging volunteers to study how the disease develops.
Wilcock said the accuracy of Alzheimer’s diagnoses in living patients had improved from 60 or 70 percent to 90 percent.
“The field has moved forward leaps and bounds in the past 10 to 15 years,” she said.
But effective treatments, much less a cure, remain elusive.
The Alzheimer’s Association estimates that 5.2 million Americans had the disease in 2014.
“There are glimmers of hope,” Creighton Phelps, director of the Alzheimer’s Disease Center Program at the NIH’s National Institute on Aging, said in an interview. “We’re still looking for something solid. It’s a complex disease.”
Until recently, funding for Alzheimer’s research lagged behind that for other diseases such as cancer, heart disease and HIV/AIDS.
Thanks to a spending bill Congress approved in December, the NIH will get almost $1 billion a year for Alzheimer’s research, about a 60 percent increase over prior years.
The Alzheimer’s Association estimates that 5.2 million Americans had the disease in 2014. And with more of the baby boom generation turning 65, reaching the age where signs of the disease start appearing, the country faces a growing health care cost.
Last year, Medicare and Medicaid spent $153 billion on Alzheimer’s care. By 2050, the Alzheimer’s Association projects, that will rise to $765 billion.
“It’s an amazing number of people who are starting to enter the age where it’s more prevalent,” Phelps said. “The costs are astronomical.”
It can be devastating for caregivers.
Creighton Phelps, director of the Alzheimer’s Disease Center Program at the NIH’s National Institute on Aging
In 2011, President Barack Obama signed the National Plan to Address Alzheimer’s Disease, which has a goal of finding an effective way to slow or prevent the disease by 2025.
In 2014, Congress approved the Alzheimer’s Accountability Act, which enables NIH scientists to communicate directly with lawmakers about the resources they need to meet the plan’s goals.
“It’s really up to the researchers to tell us what they need,” said Rep. Brett Guthrie, a Kentucky Republican who introduced the bill.
Guthrie said spending a little more money now on research could save future costs to families and the health care system.
“We could have a great ability to save money in the entitlement program,” he said.
Guthrie has witnessed the effects of the disease personally, watching two relatives become confused or get lost and eventually forget who their family members were.
“I remember the emotional drain,” he said. “It’s tough on a family.”
As the disease progresses, Phelps said, family members are faced with a series of difficult decisions: whether to care for the loved one at home, whether to hire a caregiver, whether to move the loved one to a nursing home or assisted living.
“It can be devastating for caregivers,” he said.
While better treatments await, the impacts of the disease are better understood and acknowledged than they were a generation ago.
“We can thank the Reagans for starting a conversation about it,” Carrillo said.