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Alzheimer's treatment study seeks volunteers, including two sites in Portland


Kelly Kalkofen shows pictures of her mother, Patty Slater, who died from Alzheimer's disease in June 2020. (KATU)
Kelly Kalkofen shows pictures of her mother, Patty Slater, who died from Alzheimer's disease in June 2020. (KATU)
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Kelly Kalkofen picked up the group of glossy pictures and flipped through each one, reminiscing about the happiness in the times spent.

“You can tell there, with her smile, she was always a happy person," Kalkofen said, pointing at a picture of her mother. There is sadness, though, to know she's no longer there.

"In June of 2020 my mom died," Kalkofen said with tears welling in her eyes. "Might get a little emotional here, yeah, because we’re coming up on the one-year anniversary."

Patty Slater, Kalkofen's mother, fought a ten-year battle with Alzheimer's disease. Kalkofen said she and her family members started noticing symptoms in 2010. Throughout the years, her mother's mental and physical condition got progressively worse. It started with memory loss, then a loss of control of her body and physical movement.

Alzheimer’s disease is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and, eventually, the ability to carry out the simplest tasks, according to the National Institute on Aging. Symptoms first appear for people dealing with Alzheimer's in their mid-60s. Experts suggest that more than 6 million Americans, most of them age 65 or older, may have dementia caused by Alzheimer’s, and it's the sixth leading cause of death in the United States, according to the Centers for Disease Control and Prevention.

“It’s really hard because it’s such a slow decline," Kalkofen said, talking to KATU in her Beaverton home. “[My mom] went from being happy, fun, and spunky, to being very withdrawn, depressed, agitated, and – quite frankly – mean, sometimes.”

Patty passed away in her 70s after she started showing symptoms in her 60s.

A new study is trying to get new volunteers to help catch the disease decades before any symptoms start.

“We all have to do more because this is about the most important medical problem we face as a society today," said Dr. Josh Grill, a member of the AHEAD Study leadership team and director of the UC Irvine Institute for Memory Impairments and Neurological Disorders.

Grill said his AHEAD Study team is testing a new investigational treatment, examining whether they can slow 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.

The team is seeking volunteers on its website.

"All research studies are partnerships," Grill said. "We can't make advances without people joining these studies."

They're studying a protein buildup in the brain and the risks that might be associated.

"Researchers have learned that changes in the brains of people with Alzheimer’s disease start as many as 20 years before they notice symptoms like memory problems," the site explains. "During those two decades, a protein in the brain called 'amyloid' builds up in people who go on to have memory problems because of Alzheimer’s disease. While not all people with 'amyloid' in their brain will develop memory problems, we know that the people who do are at a higher risk for developing the disease."

The AHEAD Study has approximately 100 study locations worldwide, including one site each in Northwest Portland and Southwest Portland.

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“What this study is really trying to do is ask if we can change what is happening in the brain even before the memory problems begin so that we can delay or stop the memory problems from ever beginning," Grill said.

Last week, the Food and Drug Administration granted approval to a drug developed by Biogen based on results that seemed "reasonably likely" to benefit Alzheimer's patients, disregarding warnings from independent advisers that the much-debated treatment hasn't been shown to help slow the brain-destroying disease.

It's the only drug that U.S. regulators have said can likely treat the underlying disease, rather than manage symptoms like anxiety and insomnia. It's the first new drug approved to treat the debilitating disease in nearly 20 years.

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Can you imagine that with any other disease that kills this many people? That’s insane, when you think about it," said Kalkofen, talking about the pace of research advancements with Alzheimer's disease. “We don’t have to accept this disease. It is not a normal part of aging. And we need better research and we need more funding so that we can come up with a cure or treatment.

Kalkofen is a volunteer with the Alzheimer's Association of Oregon and SW Washington. She's encouraged to see researchers with the AHEAD Study stepping up to examine the disease and reiterated that they need "all hands on deck." Kalkofen said she's fighting with one ultimate goal in mind: "To make it so not one more family has to go through what my family and I went through.”

"We need healthy volunteers, we need sick volunteers, we need young volunteers, we need old volunteers. Because you don’t know where the cure lies right now. There’s so little information out there about this disease that maybe there’s something you can do while someone’s in their 20s. We just don’t know that yet," she said. “A lot of times, once you start showing symptoms, it’s too late for some of these studies. And like any disease, you want to try to nip it in the bud, you want to catch it early because then I think we have the greatest chance of actually, eventually finding a cure.”

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