Joyce Zevola has often found herself in small moments of self-interrogation, wondering if little slip-ups and memory lapses are the first signs of something bigger.
“You put the cat food in the refrigerator,” said Zevola, 58. “There’s things you do all the time that always make you think, ‘Is this the start of Alzheimer’s?’”
Zevola wondered if her family history would put her at risk — her maternal grandmother had Alzheimer’s, and genetics are one risk factor in developing the disease. Those feelings intensified in the past year, after her mother, 84, was diagnosed with the neurological disorder. So did the desire to do what she could in the fight against Alzheimer’s, which after decades of research remains incurable and somewhat mysterious.
Searching the internet, she found a drug trial looking for participants in her city, Tampa. In signing up, she learned, she wouldn’t just be playing some small role in advancing the science of treating the disease — she also would be getting a glimpse into the future of the condition and, maybe, of her own brain.
The researcher overseeing the trial, at a local outpost of Accel Research Sites, won’t say much about the drug, other than that it aims to prevent the disease or slow its progression. But Accel also openly advertises that those who sign up for the trial — ages 55 to 80, with no Alzheimer’s symptoms — will learn whether they have a biomarker that may indicate a risk for developing the disease.
It’s not a definitive indicator. But Zevola decided she wanted to know.
A “new era” for Alzheimer’s
Despite decades of research, Alzheimer’s officially remains a diagnosis of exclusion for living patients: It’s identified when everything else is ruled out. There have been big strides toward early detection in recent years, though.
In 2015, researchers published studies that they said solidified the presence of beta amyloid, a protein that creates brain plaque, as a predictor of the disease. They also confirmed the accuracy of two methods of amyloid screening — via PET scan or analysis of the fluid that surrounds the brain and spine. But those methods are expensive, not covered by insurance and, in the case of spinal taps, invasive. (Some experts also have cast doubt on the validity of influential amyloid research, including in a recent report in the journal Science.)
Then, in 2020, researchers announced they’d developed a blood test that focused on a different type of protein, called tau protein, and that it worked as well as the scans and spinal fluid tests.
Keep up with Tampa Bay’s top headlines
Subscribe to our free DayStarter newsletter
You’re all signed up!
Want more of our free, weekly newsletters in your inbox? Let’s get started.Explore all your options
The emergence of blood tests marks a “new era” in Alzheimer’s research and treatment, said Rebecca Edelmayer, the senior director of scientific engagement at the Alzheimer’s Association, a leading nonprofit in research and awareness of the disease. For now, the tests are mostly used to improve the design of clinical trials, like the one in Tampa. There’s not enough data from them yet to create criteria for broader usage. But blood is a promising path for biomarker testing that’s affordable and scalable, and the science is moving remarkably fast.
“They’re likely to revolutionize the diagnostic process,” Edelmayer said — maybe as soon as the next couple of years.
Deborah Burke, the neurologist and principal investigator on the Tampa trial, said she’s clear with participants: The presence of a biomarker isn’t a diagnosis, and she can’t put a percentage on their probability of developing the disease. The testing is nevertheless useful to researchers — only those with the biomarker move on in the trial — and Burke said it gives participants some feeling of power over their future.
“They came to the study possibly because they were concerned about something,” she said. “Now they might be more concerned. But on the other hand, they have this opportunity to possibly be treated” — if the drug winds up working.
To know or not
At 69, Karen Kistner is barely older than her father was when he was diagnosed with Alzheimer’s. So when the Largo resident came across a Facebook advertisement for the Tampa trial, she immediately was enticed by the biomarker test.
Because of her family history, Kistner said, she assumed she would test positive. Even if it wasn’t definitive, she felt it would give her children a chance to prepare for the worst. Before her father died at 75, she said, he couldn’t talk and could barely walk.
Toward the end of her career in social services, she worked as a care manager for Humana and regularly saw the inside of nursing homes; she knew she didn’t want to wind up in one. Knowing she didn’t want to live with the disease, she asked someone close to her to “hand me a bottle of pills so I can go to sleep” should she be diagnosed.
“I don’t want to be a burden like that for my family,” she said.
Kistner turned out not to have the biomarker — a shock, she said, and an immense relief, even though she knows it doesn’t mean she definitely won’t get Alzheimer’s. But she knows not everyone wants to know one way or the other. Her brother, who’s 73, began taking medication for memory loss two years ago, but he’s told her he wouldn’t want to be tested. Just as she sought agency through knowledge, she thinks, he’s holding on to independence by staying in the dark.
“I think he will break down and quit doing the things he’s doing if he finds out he definitely has it,” she said. “He will be afraid to do things on his own.”
The researchers had prepared prospective participants to wait as long as eight weeks for their biomarker results to come in. At first, Zevola was bitten by anxiety. A positive result would give her a chance to plan — if she developed the disease, it might still be decades away.
If that was the case, she was already getting an idea of what might be in store, from watching what happened to her mother. There was the change in her personality, from relentlessly chipper to hyperfocused on the negative. There was her 91-year-old dad, still sharp-minded and healthy, “losing his wife before his eyes.”
And then, still weeks before the results arrived, she suddenly felt calm. She had something like a premonition, she said. She could envision picking up the phone, the voice at the other end telling her she didn’t have the biomarker. She put it out of her mind. And finally, in mid-July, months after she’d had her blood taken, that was exactly what happened.
She called her parents. Her father was thrilled. So was her mom: “Maybe that means I won’t get it either,” she said. Zevola couldn’t convince her mother that she did, in fact, have Alzheimer’s — that a doctor told her so almost a year ago. Her mom didn’t remember any of it.
The results were also bittersweet, she said, in that the good news also meant she couldn’t participate in the trial. She had hoped that doing something to help move the science forward would help her process her mother’s disease, that it would relieve the feeling of helplessness.
With the biomarker, though, she feels at peace. It doesn’t set her future in stone. But amid all that unknown, it’s something to hold onto.