Waiting times for neurologist appointments could get even worse

This all makes sense. If someone told me that I was at risk of developing a serious, progressive, and incurable neurodegenerative disease, I would probably want to see a doctor, too. But as anyone who has tried to make such an appointment knows, it can take months to see a doctor, especially a specialist. Many doctors’ offices have active waiting lists and are inundated with calls from potential patients eager to learn about their symptoms. Already suffering to be assessed and treated.

Alzheimer’s and Parkinson’s are the two most common neurodegenerative diseases in the world, so it’s not a bad idea to see a doctor if you’re at risk of either. On the contrary, Keavney and people in other risk groups should be able to benefit from expert advice that takes their predispositions into account to optimize their well-being. After all, there is evidence to suggest that certain lifestyle changes can reduce the risk of dementia, and in the case of Parkinson’s, it’s well established that the right kind of exercise can slow the progression of the disease.

Moreover, the treatment landscape is rapidly changing, as is the definition of “disease.” Drugs that promise to slow the progression of Alzheimer’s are already available (though their benefits are still debated), and researchers have recently proposed reclassifying the stages of Alzheimer’s and Parkinson’s based on the presence or absence of biological markers (which people at risk may already have) rather than on symptoms.

As a neurologist, I often wonder how my own patients would react if they knew that someone for whom the disease is not an active reality but a future potentiality had obtained a consultation before them.

In the past, people who could reliably predict the course of their neurodegenerative health condition were a relatively small group. A strong family history of disease could predict the course of a sibling or, more recently, disease risk could be identified through commercial or preconception genetic testing.

But all that is changing, and fast.

Genetic testing is now widely available, and in some cases mutations once thought to confer increased disease risk have been reclassified as messengers of near inevitability, raising anxiety among carriers. At the same time, research—particularly in neurodegenerative diseases—has begun to identify abnormal molecules, called biomarkers, that can begin to accumulate more than a decade before signs of disease become apparent. While guidelines do not currently recommend testing for these markers in people without symptoms, companies and consumers are unlikely to heed those recommendations.

Additionally, in recent years, scientists who conduct research on human subjects have been pushing hard to share the results of their studies with participants, including those who show no signs of disease. This means that healthy people who have participated in some Alzheimer's or Parkinson's studies can now relatively easily determine whether they have proteins, genes, or changes linked to the disease using images.

Informing study participants about what science has discovered in their own bodies is not, on its face, a bad thing (provided they are given proper explanations and advice). But, taken together, the above developments are about to drive a myriad of at-risk individuals, each with no personal history of the disease in question, to the doorsteps of doctors who are already scarce and overburdened.

In 2021, about 117,000 physicians left the workforce, and earlier this year, the Association of American Medical Colleges released a report predicting that shortages will continue to increase over the next decade, leading to a deficit of up to 86,000 physicians by 2036. Wait times to see a neurologist may already be longer than those for other specialties, and by 2025, the preexisting national shortage of neurologists is expected to increase by 19%.

These projections take into account the aging of our population, but not the increased demand for care that will certainly be precipitated by a sudden influx of young individuals who share a silent risk of one day developing a neurodegenerative disease.

Like Keavney, many people who learn they are at risk will seek advice on diet, exercise, supplements and clinical trials. Some will want to have regular checkups to monitor for disease, which could qualify them for new research studies and treatments.

In tacit recognition of this, neurological care centers focused on these vulnerable groups are popping up across the country, such as the Alzheimer’s Prevention Clinic at Weill Cornell, the Memory and Healthy Aging Program at Cedars-Sinai, and the Women’s Alzheimer’s Movement Prevention and Research Center at Cleveland Clinic Nevada. But insurance plans don’t always adequately cover preventive health care, putting some of the tests and services these clinics recommend out of reach for many.

Another inequality is related to the demographic characteristics of research study participants. Women and underrepresented groups are less likely to participate in clinical trials and, therefore, less likely to receive clinical trial results, including those that might alert them to an increased risk of disease, further exacerbating health care disparities.

Helping those at risk without diverting resources from symptomatic patients will require designing and implementing innovative health care delivery methods. For example, in recent years, group medical visits have begun to gain traction because they allow physicians to provide high-value health advice without the severe time constraints of standard patient appointments.

The group visit model would allow care teams to offer up-to-date lifestyle and treatment recommendations – those most likely to slow or prevent disease progression – without significantly extending wait times for patients. Or People at risk should see a doctor. If anonymity is a concern, web conferences could replace in-person meetings, with participants remaining anonymous and off-camera. And in both cases, these groups could be led by advanced care providers, who are typically much more available than their physician colleagues.

Telemedicine could also help fill the current gap in resources available to those at risk. Healthcare startups such as Neura Health and Synapticure are currently offering virtual-only appointments for a wide range of active neurological conditions. Integrating preventative neurology into telehealth offerings could alleviate some of the pressure on traditional clinics, ensuring that at-risk individuals have easier access to expert advice without demoralizing wait times.

But, without a doubt, the greatest asset in caring for at-risk communities will be AI.

In fact, Alzheimer's and Parkinson's are not uniform diseases that affect all patients in the same way. Rather, as scientists are now discovering, people with distinct genetic predispositions, varying biological profiles, and particular environmental exposures will develop forms of the disease that are expressed, progress, and may respond to treatment in entirely different ways.

As more people at risk are identified and tracked over time, machine learning will be able to analyze vast amounts of data—family history, subtle signs, comorbid conditions, test results, and other factors. With this in mind, one can imagine a future in which people at risk receive personalized recommendations to prevent disease at the touch of a button, a process that doctors could perhaps oversee without sacrificing the care of those who have already developed a neurodegenerative disease.

We're not quite there yet, but we're getting closer.

In the meantime, Keavney, who has relatives with Alzheimer's and Parkinson's on both sides of his family, plans to continue seeing his neurologist once a year.

“I may not be sick right now, but taking that kind of risk can make you feel like you’re doomed,” Keaveny says. “And I absolutely refuse to feel that way.”

Adina Wise is a neurologist and writer in New York.