Although it’s hard for me to comprehend and even harder to admit, I’m “of age” to be on Medicare. Recently, I visited my primary care physician (PCP) for a Medicare Annual Wellness Visit, a one-hour appointment that requires the inclusion of a cognitive screening—whether or not the patient or clinician suspects a decline in memory, judgment, or other brain functions.

The myriad brief screening tools, consisting of various questions and tasks, help clinicians determine whether patients should undergo further evaluation to potentially diagnose Alzheimer’s disease, related dementia, or a reversible condition. Alzheimer’s primarily affects people 65 and older, although the brain disorder also impacts younger adults (younger-onset Alzheimer’s).

At the start of my visit, a technician, shadowed by a trainee, performed the cognitive screen. In part, she told me three words and asked me to immediately repeat them. I did, and that was that for that task.

I was dumbfounded. Having worked for Alzheimer’s organizations, including leading a national nonprofit that promotes memory screenings, I knew this protocol was incorrect. The administrator should have asked me to recall the words again after a few minutes.

When the PCP arrived, I told her about the three-word recall error. (I also voluntarily divulged the words.) The doctor was surprised and apologetic and appreciated the intel. She said her staff clearly needed more training.

This experience especially struck me because I had just interviewed a woman about a similar situation for a newsletter published by Voices of Alzheimer’s.

As a neuro-nurse practitioner, Doreen Monks had regularly administered cognitive screenings. So, when she went to a neurologist’s office to assess her own concerns, she immediately recognized that the test’s counting exercise was done incorrectly. After numerous tests elsewhere, Monks, at 63, received an accurate diagnosis: younger-onset Alzheimer’s.

Over the years, I’ve been reporting on the underdiagnosis of Alzheimer’s and mild cognitive impairment (MCI), an early stage of decline that may lead to dementia. But these two incidents brought a new perspective on the Alzheimer’s crisis, which is amplifying as the nation’s 65+ population ages. Monks and I are Alzheimer’s insiders. What about those who aren’t?

I began wondering about all the people who aren’t screened for memory concerns–or are being screened incorrectly. New studies underscore this about MCI in the 65+ population: one estimated 7.4 million undiagnosed cases in the U.S., and another noted that more than 99 percent of PCPs underdiagnosed the condition.

Even President Biden didn’t undergo actual cognitive testing at his recent annual physical, although his doctors said he had a detailed neurological exam. (Memory concerns have been raised about both leading presidential candidates, Biden and former President Trump.)

In the general population, people don’t broach cognitive concerns or aren’t screened because—aside from fear—they don’t know better. They’re unaware that memory loss isn’t a normal part of aging or that they’re entitled to a cognitive screening under Medicare.

Or they’re seeing clinicians with limited knowledge and training in Alzheimer’s. Would an average patient know if a screening is done properly? Its administration and results can impact whether the evaluation and diagnosis process continues.

More glaring, I’m among the fortunate fraction of Medicare beneficiaries whose physician even follows the screening requirement. According to the National Institute on Aging, fewer than one-third of Medicare beneficiaries who had an Annual Wellness Visit reported having a structured cognitive assessment. Likewise, the 2023 National Poll on Healthy Aging found that 59 percent of adults 65 to 80 said they’ve never had a screening. In explaining why the incidence falls short, clinicians have cited time constraints, reimbursement, or other issues. That’s not okay.

Racial disparities are especially troubling. Non-Hispanic Blacks and Hispanics are twice as likely to have Alzheimer’s or related dementia than non-Hispanic whites, yet a higher percentage have a missed or delayed clinical diagnosis, studies show. They’re also typically diagnosed at a more advanced stage.

Years ago, perhaps someone could justify exclaiming, “What difference does it make to know if you have Alzheimer’s?” That was the prevalent attitude in the 80s when my father began exhibiting symptoms. My parents got the diagnosis and simply went on. No viable medications were available. Lifestyle modifications weren’t a thing.

Today, it’s different. Alzheimer’s research has significantly advanced, leading to drug and lifestyle interventions that can maximize quality of life. The timing of a diagnosis has never been more important.

Disease-modifying treatments like Leqembi that attack brain amyloid deposits (a hallmark of Alzheimer’s) and can help slow disease progression now exist. The groundbreaking drugs have a tight “benefit” window, targeting MCI or early-stage Alzheimer’s and, thus, dependent on early detection.

Studies continue to emphasize the benefits of physical exercise, mental stimulation, a healthy diet, and social interactions to help manage risks or slow/stop the progression of the disorder.

Yes, we’ve come far, but it’s still an uphill battle. Initial screening needs to occur—early, accurately, cost-effectively, and equally across racial and ethnic groups. For patients, we must provide more education and overcome fear, stigma, self-reporting reluctance, and language/cultural barriers. In the physician’s office, let’s ensure screening frequency and accuracy and improve PCPs’ dementia training. We must address a dire shortage of neurologists and geriatricians, especially in underserved areas. The list goes on …

Despite the hurdles, I’m inspired by Monks and others with Alzheimer’s whom I’ve interviewed lately. This is undoubtedly a cruel, incurable disease. Yet, they’re proactively making the best of their situations. They’re tuned into science and adopting lifestyle modifications. And they’re advocating for overhauls in our health care system to help themselves and others.

I couldn’t agree more: We must do better.

Carol Steinberg is a journalist and patient advocate.