Alzheimer's affects more than five million Americans, but the disease is still a mystery to scientists and doctors. Some patients and caregivers are hoping to help change that by joining clinical trials.
Bob Scott is a patient at the Alzheimer’s Center at the Southern Illinois University School of Medicine. His wife, Janet, is his caregiver, and is helping Bob as he takes part in a clinical trial for a new drug.
“So this is the second one,” Janet said. “The first one he was in for two years, and then we found out it wasn't the drug. It was a placebo, but then for three months he was actually on the drug, before they canceled it. They canceled it for people like him, but the drug is still being tested for people with less symptoms than him.”
Doctor Tom Ala, who is running the trial, said it’s not unusual for patients to take part in multiple trials, even though there’s a chance of being treated with a placebo.
“Sure many patients are subjects in the studies have said they know they may be on placebo or they may have side effects and it may not help them at all, but they'll say we’re helping their children, helping the community helping others dealing with Alzheimer's because if we don't have research like this accomplished, nothing will be done,” said Ala.
While there are some medications approved to treat Alzheimer’s, there is no cure for the disease. But clinical trials come with their own risks, which Ala says can turn some patients away. Even if it’s the best shot they have at treating their illness.
“There is no slowing of Alzheimer's right now,” Ala said. “So many patients who said, well, we're not going to take any chances of any side effects, we're not going to chance of taking a placebo. But, I tell them if you're only taking the drugs we have right now you're not slowing the disease. At least in research, there's hopes of slowing things, stopping things”
Clinical trials also add a burden to already harried caregivers, like Carol Houston, whose husband Joe is another one of Dr. Ala’s patients. Like Bob, Joe has taken part in multiple studies.
“It's 24 seven,” Carol said. “A long time ago, I came up with the idea that, okay, these are new opportunities for loving Joe. And a lot of the time I can hold on to that, then there are other times when, whoops.”
“Why did I marry this guy?” Joe joked.
“He's a wonderful sleeper at night, which is a blessing for him and for everybody. But during the day, in a lot of ways, I'm his warden, because there are just there are pills they have to be taken in the morning and noon and night,” said Carol.
That’s a difference for a couple who have been together since grade school.
Joe recalls seeing Carol for the first time around fifth grade.
“I decided, hey, I could go with her in seventh grade and we started dating. By the time we graduated from high school, we went to the same colleges and then after college, we got married.”
Carol says she and Joe cope with the disease a lot of ways — including holding onto a sense of humor.
They joked about Joe’s routine questions and comments. Carol tries to get Joe to repeat what he says at dinner every night, but he can’t remember
Becky Doiron is the education and community volunteer manager with the Illinois chapter of the Alzheimer’s Association. She says people like Joe and Bob are critical for the future of Alzheimer’s research.
“Scientists are working constantly to try to find new ways to prevent this disease to find a cure to reduce your risks,” said Doiron. “Unfortunately, those studies are stalled when we cannot continue to retain our trial participants. of the biggest struggles that people are having in these clinical studies is the recruitment and retention of trial match participants, human participants.”
Part of Doiron’s job is helping match patients with studies they can take part in and she stresses that all studies are not as involved as the ones Joe and Bob are taking part in. Doiron also says she hears a lot of people express a similar sentiment when it comes to loaning their time and sometimes their medical care to science.
“They're hoping for a cure, they want to be a part of that it's something they can give back to future generations. Hopefully, a future generation without Alzheimer's disease,” said Doiron.
More information on the Alzheimer’s Association can be found alz.org.
