Jennifer Weiss of The Dalles is a local participant in the national AHEAD Study, testing a treatment that could slow or stop Alzheimer’s. Her mother, pictured above, grandfather and great-grandfather all suffered from the disease. People ages 55-80 and of all racial backgrounds — under-represented populations are especially encouraged — can get more information about the study by calling the OHSU research line at 503-494-7647.
Jennifer Weiss of The Dalles is a local participant in the national AHEAD Study, testing a treatment that could slow or stop Alzheimer’s. Her mother, pictured above, grandfather and great-grandfather all suffered from the disease. People ages 55-80 and of all racial backgrounds — under-represented populations are especially encouraged — can get more information about the study by calling the OHSU research line at 503-494-7647.
THE DALLES — Is it possible to slow — or even stop — the earliest brain changes caused by Alzheimer’s in those with a higher risk for the disease?
The AHEAD Study, funded by the National Institutes of Health (NIH), several philanthropic organizations and the drug company Eisai, “tests whether an investigational treatment can slow or stop the earliest brain changes due to Alzheimer’s disease in people with a higher risk of developing the disease later in life” (aheadstudy.org).
Oregon Health & Science University (OHSU) in Portland is one of the national hubs for the study. Its Oregon Alzheimer’s Disease Research Center is one of 33 NIH-funded centers, said Charles Fennell, AHEAD Study community outreach specialist for OHSU.
“We have a lot of experts, and we do research we do clinics, aging and technology at OHSU,” he said. “There’s a vast amount of research going on, and a lot of minds that are very respected within the Alzheimer’s field, so it was kind of natural for us to pick up a study of this magnitude.”
Fennell said there are proteins that can accumulate and settle in the brain 15-20 years before systems of Alzheimer’s disease begin to appear. “The entire framework of this study is, maybe we’re behind when we’re trying to treat Alzheimer’s disease — if we know that the disease manifests 15 years earlier, we should start then,” he said.
Because Alzheimer’s affects all communities, the AHEAD Study seeks participants from all racial and ethnic backgrounds. Black Americans, Latin Americans and Pacific Islanders may be at greater risk but are historically underrepresented in research.
“For me, it’s really just inclusion,” he said. “Research tends to be inherently extractive; it tends to exclude different populations. But with opportunities like this, we have the opportunity to have groups historically underrepresented included in these sorts of studies …
“We run the risk of exclusion — if we’re not represented in these studies, if we’re not around for these studies, then we have no idea if these treatments will be effective for us,” he said. “And that’s important.”
Jennifer Weiss
Jennifer Weiss, 65, of The Dalles, works in Senior Services and is one of the AHEAD Study participants. It’s not the first time she’s volunteered for such a study — that started about six years ago, after a dementia training at work led to a discussion of available studies. She’s a good candidate, she said, given her family history and the fact she isn’t showing signs of dementia.
“My philosophy is, I don’t have a million bucks to donate to research. But what I do have is pretty significant. I have good genetics for that,” Weiss said. “My mother, my grandfather, and great-grandfather all had some sort of form of Alzheimer’s or dementia. So although I’m not showing any signs at this point — and you know, they were probably at my age — I just think it’s really important to contribute to research and the more people that can join and participate, the better chance we have of eliminating it.”
Her mother, having watched both her father and grandfather live with dementia, was terrified of getting it herself and wouldn’t talk about it. She died in 2003.
Weiss is taking a different approach. “I want to know what’s going on. And part of why I’m doing a study is because I want people to know that there are studies like this that are so important to really get ahead of this disease,” she said. “Research is leaps and bounds from when my mom was struggling with it. And the more people involved in the study, the more likely it is that we find the cure.”
Weiss is on monthly infusions — which take about an hour — in a blind study, meaning she doesn’t know if she’s getting the drug being studied or not. Participants make a four-year commitment involving in-person and telephone visits with study researchers every two to four weeks. Those visits include discussions and assessments on medications and general health. For Weiss, there are also monthly MRIs, and a PET scan once a year. She undergoes cognitive testing every three months.
“They watch for any adverse effects very closely,” she said. “I feel very secure, that this study has all of those safeguards involved to put me at ease.” She added that the doctors, nurses and study coordinators are all helpful and supportive.
“There are some potential side effects, but I feel like they’re worth it,” she said. “They’re pretty minor, for myself, I can’t speak for other people. But I feel like they are well worth it.”
Fennell said the trial is in stage three, which means the drug has been vetted by several entities and is FDA approved. “When it comes to national clinical trials involving medications… it’s done in phases. When you get to when you’re involving people, where we’ve done years of testing of whatever this medication might be … And then once it’s been cleared, it can be introduced to people to see the efficacy of the medication.”
Weiss said participants have the option of continuing the study after their part is over. “I have the option of continuing my monthly infusions with the live drug,” she said. “And then if I develop any kind of signs of dementia, then I can go into the other branch of the study for those who are showing symptoms, and that’s every two weeks … I don’t know at what point Medicaid would cover that or not. So, I mean, that that’s a potentially really great benefit.”
Fennell agreed. “You’re being monitored regularly by professionals and neurologists and people that you might not have regular access to,” he said. “I know that our clinic, it takes people quite a while … to come and see ologists, maybe, for a memory evaluation or to get some advice. But people that are in the clinical trials that we conduct, they get to they get a lot more facetime with our professionals.”
But for Weiss, it’s about honoring her mother and doing what she can to contribute to research. “I think I’ve always had a strong sense of social justice,” she said. “And this is important to me.”
Those wishing to learn more about the study or are interested in volunteering can call the OHSU research line at 503-494-7647. Fennell said the AHEAD Study is open to everyone ages 55-80 who believe they’re at higher risk for Alzheimer’s because of family history but are not experiencing any memory changes. Racial minorities are particularly sought.
Those who do not wish to participate in research are also invited to call.
“We can have that conversation and just provide you directly to resources within the state,” he said.
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