People Want Alzheimer’s Answers—Here’s What to Know About Testing

If you could get answers right now, would you want to know whether you might develop symptoms of Alzheimer’s disease?

The majority of Americans would, according to a new report from the Alzheimer’s Association. The group surveyed more than 1,700 U.S. adults age 45 and older, and found that 79% would want to know if they have Alzheimer’s before they developed life-disrupting symptoms—or any symptoms at all.

“People clearly want to be able to do something,” said Elizabeth Edgerly, PhD, senior director of community programs and services at the Alzheimer’s Association. That’s a shift from the past, when many people were afraid of the disease and purposely delayed diagnosis, Edgerly told Health.

But even though four in five Americans are curious about whether they might have the disease, actually figuring it out isn’t so simple. Are small lapses in memory a sign of aging or Alzheimer’s disease? And when is the right time to talk to your doctor about getting tested?

Here’s what experts had to say about how to determine if you’re developing Alzheimer’s—and when it’s worth digging deeper with testing to know for sure.

Alzheimer’s disease is the most common form of dementia, affecting an estimated 6 million Americans. It’s a progressive brain disease, meaning that its symptoms—including difficulty remembering, reasoning, and thinking—get worse over time.

Someone with Alzheimer’s disease typically begins to experience symptoms in their mid-60s, according to the National Institute on Aging, although signs can emerge earlier. Memory loss is often the first tip-off, but there are other warning signs, too—regularly searching for words, getting lost or confused more easily, struggling to shift from one task to the next, mood changes, and so on.

So, if you find yourself blanking on why you walked into a room, or occasionally forgetting someone’s name, is that a sign that something’s wrong, and you should get tested? Not necessarily.

Not every minor memory lapse is a sign of Alzheimer’s, Edgerly emphasized. “We all have some changes with normal aging—little things that are maybe more annoyances than anything else,” she said.

To determine if you’re experiencing early signs of Alzheimer’s, consider the extent to which memory and cognition issues affect your daily life, said Edgerly. Minor forgetfulness is likely a harmless glitch.

However, paying bills multiple times because you couldn’t remember whether you already did, or struggling to communicate because you regularly forget large chunks of previous conversations, may be signs of a bigger problem.

Another question to consider: When you forget something, does the information eventually come back to you?

“For most people in the normal aging process, if you think about it hard enough, you’re going to figure out where you put your keys or why you walked into that room,” said Jared Brosch, MD, associate professor of clinical neurology at the Indiana University School of Medicine.

If you routinely can’t remember, no matter how hard you try, that may be a red flag.

Someone exhibiting signs of dementia may have progressed too far to recognize them, Brosch told Health. It’s often a patient’s loved ones who pick up on these warning signs and take them to a doctor.

If you’re showing signs of cognitive decline, the first step is usually a visit to a primary care physician, Maureen O’Connor, PsyD, assistant professor of neurology at the Boston University Chobanian & Avedisian School of Medicine, told Health. Candidly describe any worrisome changes, offering specific examples if possible, she suggested.

A primary care provider can then perform preliminary cognitive screenings and, if necessary, provide referrals to specialists who can perform more thorough diagnostic assessments that test your memory, language, visual-spatial skills, and more, O’Connor explained. 

If Alzheimer’s seems likely, doctors might use additional diagnostic methods such as brain scans or cerebrospinal fluid tests to look for abnormal protein changes in the brain that are indicative of the disease.

But these tests aren’t necessarily simple to take—there’s strong demand for easy, non-invasive alternatives. In the new report from the Alzheimer’s Association, for example, more than 90% of respondents said they’d want to take a simple diagnostic test, such as a blood test, if one were available.

Researchers have already developed blood tests that measure levels of proteins associated with Alzheimer’s, and research suggests they can be highly accurate. For now, these blood tests are mostly used for research or in specialty clinics, Edgerly said, but consumers can buy some of these tests directly.

Importantly, none of these blood tests have gotten full approval from U.S. regulators yet, and they are not generally recommended for people who are merely curious about their cognitive health.

Because Alzheimer’s is a progressive disease “that starts somewhere around 20 to 25 years before a person has their first symptom,” it’s possible to test for biological signs of the disease well before cognitive issues arise, Brosch explained.

Whether people should get “presymptomatic” testing while they’re still healthy, however, is a controversial question.

There are potential benefits to finding out early, Brosch said. A diagnosis could motivate someone to plan for the future or adopt lifestyle habits shown to help prevent or delay the onset of dementia. That could include eating well, quitting tobacco, exercising, and keeping the brain sharp through cognitively demanding activities, social interactions, and new experiences.

But, O’Connor noted, those are universally healthy habits that anyone can and should adopt—no time-consuming and potentially expensive testing required.

Also, there are new drugs on the market to help slow Alzheimer’s progression, which are FDA-approved for patients with mild or early-stage Alzheimer’s. While that emphasizes the importance of early detection, people with presymptomatic Alzheimer’s can’t take these medications, so there’s only so much someone can do if they’re diagnosed before symptoms show up.

Receiving an Alzheimer’s diagnosis can be deeply confusing and upsetting as well, even upending someone’s life. Doctors are hesitant to deliver that news if they can’t also offer a treatment.

“Are we just adding worry to that person’s life, because we don’t really have anything we can do about it?” Brosch said.

The situation may change in the future. Ongoing studies are analyzing whether treatment given during the presymptomatic phase can prevent, delay, or lessen Alzheimer’s symptoms. Depending on how those studies pan out, there may someday be therapies available for people who are diagnosed with Alzheimer’s before they have disruptive symptoms.

For now, though, groups like the Alzheimer’s Association—as well as many independent experts—do not recommend intensive testing for people without symptoms. A simple cognitive screening test during your annual physical is probably harmless, O’Connor said, but she doesn’t suggest going further than that.

“There may be a future where, just like we screen for other things when we draw blood,” it makes sense to proactively test for Alzheimer’s, O’Connor said. “But I don’t quite think that we’re there yet.”