When Barbara Walker heard that the University of Kansas Medical Center was looking for people to participate in clinical trials for treating and preventing Alzheimer’s disease, she was quick to sign up.
Walker, 72, lost her husband to the illness in 2001. He was just 56 years old when he was diagnosed and had no known family history of Alzheimer’s. Walker and her three kids were shocked.
“We had plans for our future and everything, and all of a sudden it all changed,” said Walker, of Lee’s Summit, Mo. “For him to be diagnosed with this illness was just a devastating situation.”
Twelve years after her husband died, Walker struck a blow against Alzheimer’s when she signed up to be evaluated for her first study at the KU Clinical Research Center in Fairway.
The evaluation found her to be at low risk for Alzheimer’s. Jeffrey Burns, a neurologist and co-director of the KU Alzheimer’s Disease Center, said that actually made her a great candidate for one of center’s studies.
“We need people with Alzheimer’s disease, and we need even more people without (it),” Burns said. “We need healthy older adults who are interested in contributing to prevention efforts, to testing these new strategies and seeing if we can delay the onset and prevent Alzheimer’s to keep people healthier, longer. Our biggest need is people 65 and older who are healthy.”
Burns started the Alzheimer’s clinical research program at KU in 2004. Seven years later the National Institute on Aging designated it a national Alzheimer’s Disease Center, one of 29 in the United States.
That brought more funding, which increased the need for study participants.
A breakthrough in diagnosing Alzheimer’s also occurred around that same time.
A German doctor named Alois Alzheimer is credited with discovering the cause of his patients’ memory loss in 1906 by spotting amyloid plaque deposits in their brain matter during autopsies.
For more than a century, that was the only sure way to clinically pinpoint Alzheimer’s. In living patients who showed signs of memory loss, doctors diagnosed it using a “none-of-the-above” approach, writing down Alzheimer’s after eliminating all other possible causes.
Burns said that’s still largely the case today, but a shift is under way. Technological advances have made it possible to spot the plaque deposits while patients are alive and before they even show symptoms.
“We now have imaging techniques that allow us to see this microscopic pathology in life,” Burns said.
That makes it possible to study drug treatments and lifestyle changes to see if they prevent Alzheimer’s in people who don’t have it and slow its progression in people who do.
The KU Alzheimer’s Disease Center is enrolling participants in five studies for people with memory loss and three studies for people without memory loss.
The 29 designated Alzheimer’s research facilities nationwide work together, but each has specific areas of focus, Burns said. At KU, researchers are studying the possibility that as people age and their metabolic rate slows, changes at a cellular level make them more susceptible to Alzheimer’s.
So some KU studies focus on diet and exercise as prevention tools while others look at new drug treatments to rev up the metabolism.
Burns said the work is promising and breakthroughs could come within the next five to 10 years. His message to people with Alzheimer’s and their caregivers is that there’s hope, but the clinic needs help from the public.
“We’re doing really well, but we could do so much more if we could take it to the next level in terms of enrollment,” Burns said.
Breakthroughs in treating and preventing Alzheimer’s would be particularly welcome in Kansas, where an aging population increases the burden of the disease compared to other states.
About 51,000 Kansans 65 and older have Alzheimer’s. That’s about 1.76 percent of the state’s population, which is slightly above the national average.
But in some Kansas counties, the rate is double the national average. And in Clay County, it’s triple.
Burns and his team are trying to provide new options to stem the rising tide of Alzheimer’s — with help from people like Walker.
She said the time commitment for the studies she has participated in has been minimal: usually an hour or two every couple months for memory tests and some physical exams and blood draws.
It’s well worth it, she said, if it means she or her children won’t have to go through what her husband did.
“That’s my motivation,” Walker said. “I have to think about the fact that I’m getting older, and of course as we age our chances of getting the illness, that increases. And then, I have children and I have to worry about them and their health in the future.”
Andy Marso is a reporter for KHI News Service in Topeka, a partner in the Heartland Health Monitor team. You can reach him on Twitter @andymarso