Although it is difficult for me to understand and even more difficult to admit, I am “of legal age” to receive Medicare. Recently, I visited my primary care physician (PCP) for an annual Medicare wellness visit, a one-hour appointment that requires the inclusion of a cognitive screening, whether the patient or the whether or not the clinician suspects decline in memory, judgment, or other brain problems. functions.
The myriad of brief screening tools, consisting of various questions and tasks, help clinicians determine whether patients should undergo further evaluation to potentially diagnose Alzheimer's disease, associated dementia, or a reversible disease. Alzheimer's disease primarily affects people aged 65 and older, although the brain disorder also affects young adults (younger-onset Alzheimer's).
At the start of my visit, a technician, supervised by a trainee, created the cognitive screen. Partly, she told me three words and asked me to repeat them immediately. I did it, and that was it for this task.
I was stunned. 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 after a few minutes.
When the PCP arrived, I told him about the three-word memorization error. (I also voluntarily disclosed these words.) The doctor was surprised, apologized and appreciated the information. She said her staff clearly needed more training.
This experience particularly struck me because I had just interviewed a woman about a similar situation for a newsletter published by Voices of Alzheimer's.
As a neuronurse practitioner, Doreen Monks 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 had not been done correctly. After numerous tests elsewhere, Monks, 63, received a specific diagnosis: younger-onset Alzheimer's disease.
Over the years, I have reported on the underdiagnosis of Alzheimer's disease and mild cognitive impairment (MCI), an early stage of decline that can lead to dementia. But these two incidents brought a new perspective to the Alzheimer's disease crisis, which is growing as the nation's population over 65 ages. Monks and I are Alzheimer's insiders. And those who are not?
I started to wonder about all the people who aren't screened for memory problems or aren't screened incorrectly. New studies highlight this about MCI in those over 65: one estimated 7.4 million undiagnosed cases in the United States, and another noted that more than 99% of PCPs under -diagnosed the disease.
Even President Biden did not undergo actual cognitive testing during his recent annual physical, although his doctors said he had a detailed neurological exam. (Memory issues have been raised regarding the two leading presidential candidates, Biden and former President Trump.)
In the general population, people don't discuss their cognitive issues or get screened because, aside from fear, they don't know what they are. They don't know that memory loss is not a normal part of aging or that they are eligible for cognitive screening under Medicare.
Or, they consult clinicians with limited knowledge and training in Alzheimer's disease. Would an average patient know if a screening is being done correctly? Its administration and results may impact the continued assessment and diagnosis process.
Even more egregious, I am part of the lucky fraction of Medicare beneficiaries whose doctor even complies with the screening requirements. According to the National Institute on Aging, fewer than a third of Medicare beneficiaries who had an annual wellness visit reported receiving a structured cognitive assessment. Similarly, the 2023 National Healthy Aging Poll found that 59% of adults ages 65 to 80 reported never having been screened. To explain why the incidence is insufficient, clinicians cited time constraints, reimbursement or other problems. It's not good.
Racial disparities are particularly troubling. Non-Hispanic blacks and Hispanics are twice as likely to have Alzheimer's disease or related dementia as non-Hispanic whites, but a higher percentage of them have a missed or delayed clinical diagnosis, according to studies. They are also usually diagnosed at a more advanced stage.
Years ago, someone might have justified exclaiming, “What difference does it make whether you have Alzheimer's?” » This was the attitude that prevailed in the 1980s, when my father started showing symptoms. My parents got the diagnosis and just kept going. No viable medication was available. Lifestyle changes weren’t a thing.
Today it's different. Research into Alzheimer's disease has advanced significantly, leading to medication and lifestyle interventions that can maximize quality of life. Timing a diagnosis has never been more important.
Disease-modifying treatments such as Leqembi which attack brain amyloid deposits (a hallmark of Alzheimer's disease) and may help slow the progression of the disease. Breakthrough drugs have a narrow “benefit” window, targeting MCI or Alzheimer's disease at an early stage and, therefore, dependent on early detection.
Studies continue to highlight the benefits of physical exercise, mental stimulation, healthy eating, and social interactions to help manage risks or slow/stop the progression of the disorder.
Yes, we have come a long way, but the battle remains uphill. Initial screening must occur – early, accurately, cost-effectively, and equitably across racial and ethnic groups. For patients, we need to provide more education and overcome fear, stigma, reluctance to self-report, and language and cultural barriers. At the doctor's office, let's ensure the frequency and accuracy of screenings and improve training for treating doctors about dementia. We need to address a critical shortage of neurologists and geriatricians, particularly in underserved areas. The list goes on…
Despite the obstacles, I'm inspired by Monks and other people with Alzheimer's disease I've interviewed recently. It is undoubtedly a cruel and incurable disease. Yet they proactively make the most of their situation. They are listening to science and adopting lifestyle changes. And they advocate for overhauling our health care system to help themselves and others.
I couldn't agree more: we need to do better.
Carol Steinberg is a journalist and patient advocate.