It’s one of our biggest fears — being gripped by a disease that slowly steals the very essence of who we are. And early-onset Alzheimer’s, defined as striking before age 65, seems even more cruel, coming as it does at what is often the height of career success, perhaps as grown children are embarking on their own exciting paths. Stories like Tom Keane’s remembrance of his late wife Laurie Farrell, who was diagnosed with the disease at just 56, resonate on a visceral level.
It’s important to remember, however, that Alzheimer’s usually affects much older people. “At 56, Alzheimer’s is extremely uncommon,” says Harvard neurology professor Reisa Sperling, director of the Center for Alzheimer Research and Treatment at Brigham and Women’s Hospital. While about 1 in 9 Americans will get Alzheimer’s disease, age is the greatest risk factor: 81 percent of patients are 75 or older, while only 3 percent — around 200,000 people in the US — are under 65. Still, it’s good to know what to watch out for, especially since, as Sperling says, Alzheimer’s “may go unrecognized in younger people or be misdiagnosed.”
So as you or your loved ones start to have those “senior moments,” how do you know what is a normal part of aging, and when you should involve a doctor?
“I always tell people, it’s not forgetting your keys or where you parked that should be of concern,” Sperling says. Momentary lapses are often because we’re not paying attention, she adds, and menopause, lack of sleep, medications, and stress can transiently affect one’s thinking and memory. “The problem,” she continues, “is when you start forgetting that you drove your car to work that day, or where you need to go after work to get home or to some event.”
Several other markers may suggest the earliest stages of dementia.
> Is the forgetfulness continual? “When someone has an increase in forgetfulness that lasts more than six months or a year and starts to interfere with things they want to do in their life,” Sperling says, “that’s when they should see a doctor.”
> Is increased confusion or reduced concentration getting worse over time? Factors like being tired and stressed “can affect memory but are generally not progressive,” Sperling says. “When I hear it’s gotten worse, that is a red flag.”
> Are family and friends noticing the problem? “Sometimes people are very apprehensive but when you talk to a spouse or co-worker they’re like, ‘No, he seems to be just fine,’” Sperling says. “Then I’m a little less worried, though I’d still want to see them down the road, because sometimes people do recognize changes in themselves before others see them.”
> Are other troubling behavior symptoms appearing? People think Alzheimer’s is all about memory loss, Sperling says, but behavioral and personality changes — such as difficulty communicating, an unusually short temper, apathy, or withdrawal — can also be signs. “Sometimes early-onset can first present with some of the more unusual features,” she says.
> Have any of your relatives had the disease? “In early-onset, family history matters more,” Sperling says. “When people are below age 60 it is much more likely there’s a genetic contribution.” If the problems are clearly progressive, you may want to consider genetic testing, but there is a caveat: “We do have some patients who have early-onset with no family history, where we couldn’t find a gene,” she says. “There may be genes involved that we haven’t identified yet, or there may be other contributing factors.”
If you’re seeing worrisome changes, making an appointment to get assessed by a doctor really is your best course of action. He or she might be able to suggest behavioral modifications that can help, such as writing yourself notes, and medications like Namenda and Aricept can slow the progression of the disease, while others — antidepressants, for example — may also be warranted.
Longer term, Sperling, whose own father and grandfather had the disease, is hopeful. “We now know that Alzheimer’s begins many years before people get symptoms,” she says. “If we want to prevent it, we have to start as early as possible.”
Sperling’s own research on Alzheimer’s (the subject of a 2018 story in the Globe Magazine) centers on the preclinical phase of the disease, when symptoms may not yet be emerging but brain imaging can show a buildup of the amyloid proteins that are thought to trigger mental deterioration, along with the tau-protein plaques that typically form slightly later in the disease. For many years, scientists could diagnose the disease only after death, by finding the clumps of proteins that damage the brain during an autopsy. But today, researchers are able to identify the earliest stages of Alzheimer’s with PET scans and biomarkers as much as 20 years before memory and behavioral changes are noticeable.
“We haven’t hit a home run yet but I am encouraged,” Sperling says. “There’s evidence that we can lower amyloid [buildup], and if we can stop the amyloid we may be able to prevent tau. Treating early and more aggressively is making a dent.”
She points out that early detection changed the course of disease for cancer, diabetes, heart disease, HIV, and other ailments in the past couple of decades. “That gives me the most hope in Alzheimer’s,” Sperling says. “It’s one of the key factors in being able to treat.”
Elizabeth Gehrman is a writer living in Boston. Send comments to firstname.lastname@example.org.