I worked as an internal-medicine physician for 31 years. Then, about two years ago, my supervisor called me into her office and fired me. I was forgetting instructions and struggling with technologies I had always handled with ease. She probably thought I had a substance-abuse problem. In reality, at 57, I had undiagnosed Alzheimer’s disease.
Overnight, I lost my income and employer-sponsored health insurance. My wife, Cindy, felt like she was losing her husband. Our hopes and dreams crashed down around us.
Despite my connections in medicine, it took me nearly a year to wind through the system and get a confirmed Alzheimer’s diagnosis. A blood-based biomarker test called p-tau217 came back positive. Through a PET scan and spinal tap, I saw the sticky, abnormal plaques associated with the disease building up in my brain.
I was fortunate that we caught it early enough for my care team to act. Diagnosing Alzheimer’s early is like finding stage one cancer rather than stage four. If you catch it early, you can pursue lifestyle or medical interventions to slow the disease.
Stories like mine tend to make people think of loved ones with Alzheimer’s or their own fears of developing it.
It’s an understandable concern: 1 in 5 women and 1 in 10 men 45 and older will develop Alzheimer’s.
The good news is that we now have the technologies to diagnose and treat it early. Up to 40% of dementia cases are preventable or can be delayed when caught early and treated with lifestyle changes such as exercise, good sleep and social engagement. Walking as few as 5,000 steps a day has been shown to delay markers of cognitive decline by seven years on average.
For some patients, cutting-edge therapies like the anti-amyloid medicine my doctor prescribed for me can preserve cognitive health and independence.
Sadly, our healthcare system is built mostly for late-stage crisis care. Rather than routinely testing cognition in primary care, we wait for patients to reach late-stage clinical thresholds and send them to specialists with monthslong waiting periods, preventing thousands of patients from getting diagnosed and treated while it can still help.
Others may live alone or in rural healthcare deserts, or be told that cognitive decline is a normal part of aging. By the time they get answers, the window for treatment has often closed.
If it was difficult for me, a physician with a dedicated spouse, to get diagnosed in time, imagine how hard it can be for others.
Policymakers debate whether Alzheimer’s treatments work and are worth covering. Cindy has argued with our insurance company over these same questions when it has denied coverage for the treatment that has kept me alert and functioning since my diagnosis.
It’s true that lifestyle interventions can be cheaper. But I was already eating healthy, exercising and drinking minimal alcohol. Yet before I began treatment, Alzheimer’s was taking hold of my body. I was a deacon in my church while battling the disease, and there were many moments after my diagnosis in which I was a fumbling mess, forgetting where I was supposed to be and what I was supposed to say in a given service. By contrast, nine months into treatment, I vividly recall a church service in which I knew exactly where I was and what I was supposed to do. Afterward, I told Cindy, “I’m back.” She smiled and said, “I could tell.”
There may be another lifestyle or medical intervention that works better for another patient. But even if a miracle one-size-fits-all Alzheimer’s therapy were approved tomorrow, the same dangerous barriers would remain: People are diagnosed too late, they can’t afford the tests or treatments, and they can’t get access to care in time.
To change the trajectory of the disease for our children and grandchildren, we must make early Alzheimer’s detection a national priority.
That means expanding access to blood-based tests like p-tau217 so that patients can be diagnosed before their brains are permanently damaged. It means ensuring that once someone qualifies for a U.S. Food and Drug Administration-approved anti-amyloid therapy, insurance rules don’t stand in the way. It means empowering primary-care doctors — the clinicians most people see — to detect Alzheimer’s early and guide families through treatment and lifestyle options rather than referring them to specialists with yearlong wait times.
