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I Changed My Life When I Thought I Was Developing Alzheimer's. But I Wasn't
A former university president reshaped her world around a misdiagnosis
Rebecca Chopp at home in Colorado with her husband, Fred, in front of portraits she painted following her diagnosis of mild cognitive impairment.
AARP (From left: Courtesy Rebecca Chopp, Joanna Kulesza for The Washington Post via Getty Images)
Key takeaways
- Being diagnosed with mild cognitive impairment can lead someone to reconsider every aspect of their life, including their career and future plans.
- New blood tests have made the diagnosis of certain cognitive and memory issues, like Alzheimer’s disease, more accurate than they were even a few years ago.
- It’s critical to work with doctors to advocate for comprehensive exams and testing.
In 2019, I received news that changed the course of my life.
After a series of cognitive tests, brain scans and appointments with neurologists, I was diagnosed with mild cognitive impairment due to Alzheimer’s disease , the earliest symptomatic stage of the disease in which memory and thinking problems emerge but most people continue to live independently. At the time, I was 67 and the chancellor of the University of Denver after a career that had included presidencies at Swarthmore College and Colgate University. I was still deeply engaged in my work, but knew that something was wrong.
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I had become lost while driving to a routine doctor’s appointment. My memory wasn’t as sharp as it once was. I was sleeping more than usual after years of functioning on very little sleep.
When my doctor suggested cognitive testing, I laughed. I had spent my life succeeding in demanding academic environments. I had never failed a test. Then I failed one.
More testing followed, including evaluations from multiple neurologists. Doctors found a small injury in the speech center of my brain. As a child, I had great difficulty learning to speak and took lessons until I was in seventh grade.
At first, the diagnosis felt like a death sentence, sending me and my husband, Fred, reeling. Dementia runs in my family. Having grown up on a Kansas farm, I vividly recalled both grandmothers and my mother at the end of their lives, struggling with the devastating effects of Alzheimer’s. For years, I worried that one day I would also live with the disease. Now it seemed my worst fear was coming true.
Taking control
One neurologist told me that within three years, I might no longer be able to button my own shirt. I remember feeling devastated, while my husband was in total shock.
Painting, along with eating healthy, regular exercise and getting a puppy, is one of the many ways Rebecca Chopp has stayed active and mentally engaged.
Courtesy Rebecca Chopp
Depression set in. Then practicality took over. I decided that if I had limited time before the disease progressed, I wanted to make deliberate choices about how I spent it. Fred and my son, Nate, were ready to be by my side for anything and everything to come.
I stepped down as chancellor because I worried that cognitive decline might eventually affect my ability to do the job well. It was a difficult decision, but I felt a responsibility to the university and the people I served.
My husband and I also began reorganizing our lives around what we believed was an inevitable future. We moved from our downtown Denver home into a senior living community. I immersed myself in everything I could learn about Alzheimer’s disease. I read scientific studies and followed developments in dementia research with almost obsessive attention.
At the time, there were no approved disease-modifying drugs for Alzheimer’s. Blood biomarker testing did not yet exist as a practical diagnostic tool. Doctors relied largely on symptoms, cognitive testing and imaging.
Eventually, I made peace with the diagnosis and tried to make the best of it by advocating for myself and others living with the disease through participation on the boards of the Alzheimer’s Association and Voices of Alzheimer’s.
A new neurologist introduced me to the idea that lifestyle interventions might help slow cognitive decline. Today, that concept is much more widely accepted, but at the time of my 2019 diagnosis, only some doctors strongly advocated for it. My doctor encouraged me to continue exercising, eating well, staying socially engaged and challenging my brain. I adopted a Mediterranean-style diet, exercised intensely and started drawing and painting and soon realized how much I enjoyed it.
Fred and I eventually left the senior living community and moved into an active-adult community to be closer to our son and my sisters. I kept hiking, exercising, painting and living fully.
Rebecca joined the board of the Alzheimer's Association and Voices of Alzheimer's to advocate for those living with dementia.
Courtesy Rebecca Chopp
Unexpected improvement
Then something incomprehensible happened. I didn’t get worse. In fact, over time, I seemed to be getting better.
I started noticing small things. I was remembering details more easily. I was correcting Fred on directions. I was speaking publicly with confidence and clarity. My paintings became increasingly sophisticated. Friends commented on how well I seemed to be doing.
One day, after I gave a presentation on Alzheimer’s disease at a retirement community, a retired researcher approached me. “You were diagnosed in 2019,” he said. “It’s now 2025. I don’t understand how you’re functioning at this level. If I were you, I’d ask to be retested.”
He wasn’t the only one.
People familiar with the disease kept expressing surprise that I showed so little progression. Many individuals diagnosed around the same time I was were experiencing significant decline. I began wondering myself — not if I might not have Alzheimer’s; That possibility honestly never occurred to me. Instead, I wondered whether I might be extraordinarily fortunate, a person whose lifestyle changes had dramatically slowed the disease.
By then, blood biomarker testing had become available. These tests can detect biological markers associated with Alzheimer’s disease, including amyloid plaques and tau tangles. They don’t provide every answer, but they offer information that simply wasn’t available when I was diagnosed.
Meanwhile, I had been assigned yet another neurologist who specialized in Alzheimer’s disease and carefully reviewed my records. After talking with Fred and me, she looked puzzled. “You were diagnosed in 2019?” she asked. When I said yes, she explained that my fluency, attention and memory were inconsistent with what she would normally expect after six years from diagnosis.
Then she said exactly what I had been thinking. “We need to retest you.” I agreed immediately. First came the blood biomarker test. The results showed no evidence of Alzheimer’s pathology. Then I repeated the extensive cognitive testing I had taken years earlier. This time, I not only passed, but scored in the normal-to-above-normal range across the measures that had once raised concern. The conclusion from my doctor — that any cognitive impairment I once had was now gone — was astonishing and definitely not typical for most patients.
Fred experienced pure joy. My son was relieved. For me, the emotions were more complicated. For six years, Alzheimer’s had become part of my identity. I had written a book, Still Me: Accepting Alzheimer's Without Losing Yourself. I had built relationships with countless people living with dementia and their caregivers and found purpose and camaraderie. Suddenly, I was being told that the diagnosis that had shaped my life was wrong.
Even today, no one can fully explain what happened. The small brain injury may have played a role. One theory is that chronic stress and inflammation from my job amplified cognitive difficulties associated with that injury, which was believed to be prenatal. Perhaps the symptoms mimicked Alzheimer’s closely enough to lead doctors down the wrong path.
Rebecca has been traveling again with her husband and hopes to visit her first grandson by herself to California.
Courtesy Rebecca Chopp
Brighter future
The lesson from my story is not that Alzheimer’s diagnoses are routinely wrong. Most are not. The lesson is that better diagnostic tools can provide crucial information and give patients and families more certainty. We need to take advantage of them.
If I’d had them in 2019, maybe I wouldn’t have spent six years preparing for a future that never happened.
Now I spend my time hiking mountain trails near our new home, closer to Rocky Mountain National Park. I have been traveling independently to visit friends. I gave up driving soon after my diagnosis, but now I’m driving again and enjoying some newfound freedom.
What hasn’t changed is my commitment to dementia advocacy, though my focus has shifted more locally. I serve on the board of the Estes Park Dementia Day Center and the Vita Vere Alliance, a nonprofit organization dedicated to supporting those impacted by dementia. Most of all, I value something I once feared I had lost forever: the ability to continue creating new memories and experiences.
—As told to Paul Wynn
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