When the results of President Biden’s annual physical were released last month, many wondered why his primary care physician hadn’t conducted a cognitive assessment. While this speculation is fueled by an ongoing, politicized debate about the mental fitness of both President Biden and former President Trump, it touches on an important issue that has largely gone overlooked: In navigating an Alzheimer’s disease crisis, what role should primary care providers play in cognitive testing?
Alzheimer’s is a neurodegenerative disease that currently has no cure and typically manifests with memory loss, mood and personality changes, and difficulty with language. Given Alzheimer’s history as a hopeless diagnosis, people living with the condition, their family members, and providers have recently welcomed the first drugs ever to treat the disease’s underlying brain pathology.
New drugs like Leqembi attack sticky plaques of beta-amyloid protein, a driver of brain tissue deterioration and a well-known biomarker of Alzheimer’s. These drugs are currently the only disease-modifying treatment for people with Alzheimer’s. Aduhelm, the first drug in the class to receive FDA approval, was withdrawn by its by maker, Biogen, in January 2024 after a contentious and largely ineffective stint on the market. Donanemab, the most effective drug in the class at clearing amyloid proteins, was recently delayed in its approval process after the FDA announced it would convene an advisory council to further study the drug’s safety.
Despite the setbacks with anti-amyloid treatment, people taking these drugs benefit from slower disease progression and enjoy more time in a mild stage of the illness. But access to these drugs is time sensitive. They have been tested and shown effective only for individuals in a narrow early stage of Alzheimer’s, and those who are past that window are simply out of luck.
Critical to the race for prompt diagnosis and treatment is a rather unexpected clinician: the primary care provider (PCP). But this workforce isn’t currently up to the challenge.
PCPs are often the first clinician to identify a patient’s Alzheimer’s and subsequently manage their care. In fact, according to the Alzheimer’s Association, about 85% of people diagnosed with some form of dementia first receive that diagnosis from a non-dementia specialist, typically a PCP.
While Biden had no challenges accessing a primary care physician for his annual physical, many Americans have trouble doing this. As is true for other health professions, there is a shortage of PCPs throughout the country, especially in non-metro and rural areas. In 2023, there were more than 8,500 documented primary care provider shortage areas in the U.S., affecting an estimated 102 million people. The demand for care far outstrips the supply of providers, with national wait times to see a PCP exceeding an average of 26 days for new patients.
Unfortunately, the challenge of obtaining a diagnosis and beginning treatment is not over once a patient makes it into the exam room.
Many PCPs don’t feel comfortable assessing cognition. A 2020 survey conducted by the Alzheimer’s Association found that 40% of PCPs are “never” or “only sometimes” comfortable diagnosing Alzheimer’s disease and other dementias and relaying those diagnoses to patients. In the same survey, almost all PCPs said they wait for their patients to bring up cognitive concerns rather than proactively discussing them.
This unease likely stems from a lack of training. In the Alzheimer’s Association survey about one-quarter of PCPs reported having had no training during their residencies on dementia diagnosis and care. For those who did get some training, most said they received “very little.” This was true even for physicians who completed their residencies in 2019 or 2020.
Physicians can — and are required to, in some states — pursue continuing medical education. But requirements are unequal among states, and physicians have great flexibility in the courses they can complete in addition to any licensing requirements. Massachusetts and Rhode Island require physicians applying for or renewing their licenses to complete a one-time, one-hour training on dementia diagnosis, care, and treatment. In Illinois, providers are required to complete one hour of dementia training every six years to maintain their license. Washington, D.C., where President Biden’s physician practices, has no dementia-specific training requirements for physicians. Most states in the U.S. have few or no dementia training requirements.
Without state and regional mandates, buy-in from physicians to complete dementia-related continuing education courses on their own is low. About 40% of the PCPs in the 2020 Alzheimer’s Association survey indicated they did not have time for dementia-specific courses, and about half said there are simply too few Alzheimer’s- and dementia-related training options to choose from.
Primary care physicians have many competing priorities. They treat patients of all ages with various needs, so spending a significant amount of time on dementia-specific training may seem inefficient. However, an estimated 95 million Americans —one-quarter of the population — will be 65 or older by 2050, and nearly 14 million people will have Alzheimer’s. PCPs, therefore, have a unique responsibility to improve their training now in preparation for a growing and complex patient population in the future.
Dementia care training can fall into two buckets: training completed during medical education, including residency, and licensure-related continuing medical education. Research shows that students and licensed physicians alike prefer an education model that combines clinical training with information on social services, caregiver support, and community resources.
Medical students describe greater confidence and interest in caring for Alzheimer’s and dementia patients when their classroom learning is paired with in-person, activity-centered learning with real patients.
First-year medical students in one study met monthly with people living with early-stage Alzheimer’s in social settings, such as at a restaurant for dinner. At the end of the program, students more accurately identified signs, symptoms, and risk factors for Alzheimer’s on a standardized skills assessment. Students also reported increased understanding of the caregiver burden associated with Alzheimer’s and were more interested in pursuing medicine focused on dementia or older adults than they had been before entering the program.
For practicing primary care physicians, in addition to training focused on diagnostic skills and new treatments, training about caregiver support, community living options, and home and driving safety is equally important.
In North Carolina, for example, a short, intensive curriculum for PCPs on screening, diagnosis, and treatment was paired with resources and training by Project CARE, a state-funded support program for dementia caregivers. Participants reported a 72% increase in using standardized cognitive assessment tools during office visits, paired with statistically significant increases in personal confidence in diagnosing and treating dementia. The physicians taking part also initiated about 160 family referrals to Project CARE in the six months after training, compared to “almost never” doing so before.
Training prospective and current physicians in detection, diagnosis, and management of Alzheimer’s disease is key to getting a grip on this crisis. But that’s just the beginning — PCPs must also train and become comfortable with complex new therapies. Anti-amyloid drugs can have serious side effects, so ensuring that PCPs can effectively communicate these risks to patients will go hand-in-hand with early detection and diagnosis. To be sure, PCPs may ultimately choose to refer the patients they suspect may have Alzheimer’s to specialists like neurologists, but they should first be better equipped as the gateway to Alzheimer’s care for their patients.
Katherine O’Malley is a policy analyst at the Partnered Evidence-based Policy Resource Center at Boston University School of Public Health.