The need for funding for Alzheimer’s disease research and support is greater than ever as the older population grows, the former chief medical officer of the Alzheimer’s Association says.
Research and the approval process for new treatments “unfortunately costs a lot of money,” said Dr. Bill Thies, the Alzheimer’s Association’s senior scientist in residence. Thies was in Orangeburg recently speaking to local residents about the disease.
More than five million Americans are living with Alzheimer’s, including 86,000 in South Carolina. Alzheimer’s is a degenerative brain disease characterized by a decline in memory, language, problem solving and other skills that affect a person’s ability to perform everyday activities.
It is the most common cause of dementia and the sixth-leading cause of death in the U.S., killing more people than breast cancer and prostate cancer combined. The disease mostly affects older adults, although younger-onset Alzheimer’s can develop before the age of 65.
Research is costly and so is support for those who have the disease, Thies said.
“People don’t get Alzheimer’s disease and die rapidly – they have the disease for a long time and they need hands-on care from other people for a long period of time,” he said.
And as the population grows older, the number of people diagnosed with the disease grows as well. But the younger population is shrinking, even though the need for care for older Americans continues to rise.
“So all of that draws a very dark picture if you don’t interrupt that cycle with some sort of treatment that prevents people from going on to the catastrophic later stage of the disease,” Thies said.
“And that’s what the whole field is working on at the moment,” he said.
The Alzheimer’s Association is the leading voluntary health organization in care, research and support of the disease and is the world’s largest private, nonprofit funder of Alzheimer’s disease research.
“So, we’re trying to raise money from the community to help us support certain strategic investments that maximize the impact of the large federal government investment in Alzheimer’s research,” Thies said.
“A big part of what we do is manage the research efforts of the organization,” he said. “So, we fund research, we bring together meetings of researchers in order for them to share data (and) we publish that data” as well as managing societies and interest groups.
Thies talked about “where we’re going and why there’s hope that we will find better treatments for the disease in the coming years.”
Answers will eventually come, but “sometimes we have to wait a little bit,” he said.
One bright spot in the future of research is the search for a biomarker to better diagnose Alzheimer’s, the scientist said.
“We are looking for better chemical ways to diagnose the disease,” he said. “Right now, we do the diagnosis by talking to people, and that’s an imprecise way to exchange information.”
“So, finding a biomarker for the disease that allows us to diagnose the disease – which is symptomatically dormant for many years before it appears as cognitive loss of function – finding a way to see that early on so we can treat it before it becomes symptomatic is one direction that we’re making good progress in,” Thies said.
Another area of interest is the search for “a molecule that will interrupt the pathology of the disease,” he said.
People sometimes talk about a cure, but “cure” is a concept from the world of infectious diseases that doesn’t match up with Alzheimer’s, Thies said.
“Cure actually does not fit with any chronic disease. We don’t cure any chronic disease,” he said.
“We talk about curing something like cancer, but that’s sort of a made-up definition,” the scientist said. “We’ve said, ‘If we treat you and you’re cancer-free for 10 years, you’re cured.’ If you get your cancer back (in the future), you’ve got a new cancer or is it the same old one that just came back again?”
Prevention is a concept that does fit with Alzheimer's disease, he said.
“Prevention is a statistical concept of lowering the number of cases of any disease in a given population by some sort of invention,” Thies said.
“And so, for Alzheimer’s disease, the things that are proposed for that kind of prevention include physical activity, changes in diet, the amount of mental activity that you have and good general healthcare,” he said.
Although there’s no cure, “we can find better ways to manage chronic disease,” he said.
Active in raising money for the Alzheimer’s Association, Orangeburg residents Charlie Williams and Bob Jennings brought Thies to Orangeburg for the event.
Williams’ mother, the late Karen Johnson Williams, retired as chief judge of the U.S. 4th Circuit Court of Appeals after being diagnosed with Alzheimer’s in 2009. She passed away in November 2013 at the age of 62.
In the years since, Charlie Williams has helped organize events like the annual “A Ride to Remember” and other fundraisers.
He noted, “We’re waiting for that first survivor."