When Bill Ritter, a longtime anchor for WABC-TV New York’s ABC7 Eyewitness News, recently announced that he had been diagnosed with early-stage Alzheimer’s disease, he shared that he is receiving treatments that are keeping the disease’s progression at bay. Unfortunately, many patients never receive the same opportunity for treatment because they are diagnosed too late.
With Alzheimer’s disease, delayed diagnosis can determine whether patients qualify for new treatments, clinical trials, and future planning opportunities. With more than 7 million Americans currently living with Alzheimer’s disease, the highest number ever recorded, the case for early diagnosis and treatment is more important than ever before.
Alzheimer’s disease is still being diagnosed too late
Nearly 4 in 5 Americans surveyed by the Alzheimer’s Association reported they would want to know if they had Alzheimer’s disease before it impacted their lives. They also want treatment, even if it comes with risks, as long as it slows the progression of the disease.
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Despite growing numbers of diagnoses and increased awareness of the earliest signs of the disease, Alzheimer’s is sadly still one of the most delayed diagnoses in medicine. Research shows patients wait, on average, 3.5 years from the onset of symptoms to receiving an Alzheimer’s diagnosis. In Mr. Ritter’s case, he first noticed minor memory issues two years before seeing his doctor for evaluation.
Previously, the only tools available to diagnose early Alzheimer’s were expensive PET amyloid brain scans and invasive lumbar punctures. Too frequently, a presumed diagnosis of Alzheimer’s disease, statistically the most likely cause of cognitive decline, is still reached only when the disease is already well established.
Thankfully, rapid advancements in diagnostics, biomarker research, and therapies have changed what is possible. New disease-modifying therapies, increasing clinical research opportunities, and more sophisticated diagnostic tools have changed the way that Alzheimer’s is diagnosed and treated, but only if early action is taken. The new treatments for Alzheimer’s disease are effective only when symptoms are mild, and at this stage of the disease, a diagnosis can only be made confidently and reliably through the use of sensitive and sophisticated biomarker tests.
What’s causing the diagnostic bottleneck?
Many of the delays in diagnosing Alzheimer’s disease come from the limitations of our health care system, not patients’ fear or unwillingness to be evaluated. Unfortunately, some people can spend 8 to 14 months on a waiting list to see a neurologist for cognitive testing or ideally biomarker testing. By the time they are diagnosed (by a biomarker), they have already progressed to the stage of disease where they may no longer be eligible for the new treatments. Indeed, these new treatments work best when given as early as possible, at the start of symptoms. Every day matters. As with cancer, without the new treatments, the disease progresses unchecked.
Neurologist shortages, a growing aging population, lengthy diagnostic pathways, and limited access to specialists in rural communities also contribute to diagnosis delays.
Timing matters
Historically, an earlier diagnosis provided confirmation of the condition and enabled care planning. Today, it also contributes to treatment eligibility and a chance to change the otherwise inevitable course of the disease. Amyloid-targeting therapies Kisunla and Leqembi target the underlying biology of the disease, slowing progression in eligible patients and offering hope for individuals and families impacted by the disease.
In addition to losing access to potential treatment, a delayed diagnosis can also impact whether patients are eligible for clinical trials for emerging Alzheimer’s treatments. These trials often require participants to be biomarker-confirmed early-stage patients. Those diagnosed too late may be excluded.
The next era of diagnostic tools: blood-based biomarker testing
Alzheimer’s diagnostics are becoming faster, more scalable, and more practical, with more treatment options available than ever before. One of the most promising developments is less invasive diagnostic methods, including blood-based biomarker testing. Biomarkers allow doctors to identify the biological processes of Alzheimer’s disease, often before symptoms have progressed. Because amyloid-targeting therapies are most effective when symptoms are minor, biomarkers are a gateway to treatment.
Research trials are currently underway exploring whether a simple finger-prick blood-based biomarker test can provide an early Alzheimer’s diagnosis. With a growing number of Alzheimer’s cases and the availability of improved screening and diagnostic tools, providers need to identify referral sources that can act quickly and meet patient needs. Specialized memory clinics can help bridge the gap between emerging diagnostics and treatment access in certain markets.
Treating Alzheimer’s like any other time-sensitive disease
As both practitioners and patients, we would never accept years-long delays in a cancer diagnosis. Now that we have disease-modifying treatments, Alzheimer’s should be regarded in the same way. We should no longer be questioning whether someone has Alzheimer’s. We just need to do a test, and then we’ll know for sure. And if we do it early enough, we can intervene and slow the disease’s progression.
Every month that a patient spends waiting for answers may also mean losing access to treatment options that they can never regain.
Emer MacSweeney is a world-renowned expert in brain and mind health, including the diagnosis and treatment of Alzheimer’s disease, chronic traumatic encephalopathy (CTE), and other neurodegenerative conditions. She is the cofounder, CEO, and medical director of Re:Cognition Health, which provides a specialist service for the accurate diagnosis and treatment of progressive neurodegenerative and neurodevelopmental conditions, as well as traumatic brain injury, with centers across the United States and the United Kingdom.
A pioneer in Alzheimer’s research and treatment, Dr. MacSweeney has been involved in clinical trials since the early development of therapies for the disease and was the first clinician in Europe to administer the amyloid-targeting therapy Kisunla outside of a clinical trial. She trained in neuroradiology at The Hospital of Neurology and Neurosurgery, Queen Square, London, specializing in interventional vascular neuroradiology, and spent time on scholarship at Harvard University. Her TEDx talk on CTE and contact sports has been viewed more than five million times worldwide.
