The New Face of Alzheimer’s: Early Stage Patients Who Refuse to Surrender

Photo for The Washington Post by Joanna Kulesza.
As the leader of three universities, Rebecca Chopp lived a life of the mind. So when she and her husband, Fred Thibodeau, learned she was in the early throes of Alzheimer’s disease, first, they grieved. Then, they decided to fight.

BROOMFIELD, Colo. – When Rebecca Chopp was diagnosed with early stage Alzheimer’s disease, she and her husband did the only thing that seemed to make sense: They went to their favorite Mexican restaurant, held each other in a back booth and drank margaritas. And cried. After a while, they helped each other back across the street to their home.

Chopp, at 67, was chancellor of the University of Denver, at the pinnacle of a career powered by a daunting intellect and relentless work. She was also an ordained minister, prolific author and former president of Swarthmore College and Colgate University. Sometimes, Chopp thought of herself as a brain with a body attached.

Now, she was crushed, facing the loss of that beautiful mind. She worried she would soon be an empty shell, drooling and unkempt, a burden to the people she loved. “There is a sense that when you are diagnosed, you are immediately going to descend into madness,” Chopp said.

When she relinquished the job she loved, Chopp fell into deep despair, confounded by the prescription given to her by an empathetic doctor: “Live with joy!” She had nightmares about going insane. But eventually, she began to push back against the darkness.

Chopp has mild cognitive impairment, a condition that involves subtle changes in thinking and memory and that, in most cases, leads to Alzheimer’s dementia, a fatal neurodegenerative disease that affects more than 6.7 million Americans.

For years, there was little doctors could do for people with Alzheimer’s, even at a very early stage. Now, changes are coming in how the disease is diagnosed and treated, and patients with mild cognitive impairment are at the center of the efforts. Lacking a cure, scientists are trying desperately to delay the worst phase of the illness.

For the first time, medications are emerging, often amid intense controversy. These drugs are designed to slow the disease, not just treat symptoms, for people with mild cognitive impairment, known as MCI, and early dementia from Alzheimer’s. New blood tests are making it easier to diagnose the ailment. Meanwhile, a growing number of studies suggest that lifestyle changes can help keep people in the early stage longer – an approach Chopp has embraced.

Phil Gutis, 61, a writer and advocate with early Alzheimer’s, said most people who think about Alzheimer’s conjure up the devastating last phase, with its heartbreaking loss of autonomy, mobility and sense of self. But once treatments for the memory-robbing disease become more widely available, he predicted, some people will get tested earlier, making clear that Alzheimer’s patients “are not just 90-year-old ladies sitting in wheelchairs.”

“People like Rebecca and me, we are the new face of Alzheimer’s,” Gutis said. “We are trying to say, even after a diagnosis, that this is not an immediate death sentence. There is still a lot of life left.”

In 2019, when Chopp was diagnosed, she was distraught about a neurologist’s prediction: She wouldn’t be able to button her clothes or feed herself within two years. And she was irritated when some friends, hearing about her illness, started talking more loudly, as though she could not understand what they were saying.

“There’s nothing wrong with my hearing,” she thought. “I’m going to lose my mind – but not yet.”

Instead, Chopp, 71, rises at dawn to take her dog for a walk in the foothills of the Rocky Mountains. Then, she follows a daily routine that includes vigorous exercise, a strict diet, painting and writing – anything that might help keep her stable longer in an early stage of her illness.

Trying to follow her doctor’s advice to seek out joy, Chopp is a cauldron of conflicting emotions, at times filled with terror, but often at peace.

“Here I am, living well,” Chopp writes in the draft of a book about her experience tentatively titled, “Not My Grandmother’s Alzheimer’s.” “Raising and training a puppy, discovering a latent passion for painting, writing this book, and making a new meaning of life – even as I know I am dying.”

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‘In between’

The term “mild cognitive impairment” became popular in 1999 after researchers at the Mayo Clinic in Rochester, Minn., published a seminal article describing patients who were “in between,” said Ronald C. Petersen, an Alzheimer’s researcher at Mayo and lead author of the paper.

The patients’ memories were slipping, but they were still able to drive, pay their bills and, in many cases, work. When the paper described these patients, “Doctors said, ‘Yes, that makes sense. I see people in my practice like that, and I don’t know what to do with them,’ ” Petersen said.

The Alzheimer’s Association says that millions of older Americans may have MCI, but cautions the data is not firm. Not all of them will develop dementia, the organization said. About 10 to 15 percent of people with mild cognitive impairment develop dementia every year, though the rate of decline varies widely, experts say.

Drugmakers, after years of failure, are making some strides in slowing the destructive march of Alzheimer’s. In January, the Food and Drug Administration granted accelerated approval to a drug, made by Tokyo-based Eisai, called Leqembi, that modestly slows the illness. But the medication, considered a major step by many doctors, has been harshly criticized by others because of safety concerns. The drug is not yet covered by Medicare, the federal health program for older Americans.

Other causes of MCI include depression, anxiety, medications and stroke, some of which are treatable.

Mild cognitive impairment is different from forgetfulness caused by normal aging, though it can be difficult to tell them apart. When people forget names or misplace their car keys, the culprit usually is normal aging, doctors say.

But when they “are repeating conversations, late on paying their bills and getting lost driving to a familiar place,” it is worth a closer look, said Gil Rabinovici, a neurologist at the University of California at San Francisco.

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Shocked? Yes. Surprised? No.

In October 2018, Chopp took time out from her frantic schedule as chancellor at the University of Denver for an annual physical. When her doctor asked if she had noticed any changes, Chopp replied that she was suddenly sleeping a luxurious eight or nine hours a night after a lifetime of sleeping only four or five hours.

Also, Chopp said, laughing, she had gotten lost driving to her doctor’s office that day, even though she had been there before and was using GPS. She had pulled into a bank parking lot and called her husband for directions.

Chopp’s doctor asked her to take a few memory tests, and was concerned enough to refer her for more testing. Months later, an anxious Chopp and her husband headed to an appointment with a specialist for the diagnosis.

“I dressed with care as if to signify to the doctors (and perhaps myself) ‘I am sane.’ ” she writes in her book. “I wore my favorite St. John’s knit jacket, checked with pink and white plaid. I had new black pants and my favorite black shoes. I brought a tote bag with all my records and a pad of paper. I projected the air of a prepared and capable student.”

When the diagnosis came, delivered in antiseptic tones by the doctor who said Chopp soon would be unable to care for herself, Chopp’s husband was shocked but not surprised.

“We kind of knew what was coming, but the confirmation was difficult,” said Fred Thibodeau who, like his wife, is an ordained Methodist minister. “What does it mean? How much good time do we have left?”

Chopp’s first and most painful decision was giving up the job she loved. Growing up in Salina, Kan., Chopp had been discouraged by her parents from going to college. But she had always had “gumption,” she said, and her restless intellect drove her to get a PhD at the University of Chicago, which she described as Disneyland. She became the first woman to head the University of Denver, Swarthmore and Colgate.

Chopp, an accomplished scholar on progressive Christian movements, reveled in the nonstop demands of running academic institutions. She had planned on working at the university in some way for another decade.

When she announced in 2019 that she was stepping down as chancellor, Chopp described her illness as a “complex neurological disorder.” She was not ready to see headlines highlighting her Alzheimer’s diagnosis. After she left her job, she was bereft. The isolation of the pandemic only deepened her desolation.

Soon after her diagnosis, Chopp emailed Ann-Charlotte Granholm-Bentley, a researcher who was director of the university’s Knoebel Institute for Healthy Aging. Chopp wanted to know if there was anything she could do to help herself.

“Plenty,” Granholm-Bentley responded. She filled binders with the latest research on Alzheimer’s, including studies on how lifestyle changes could help slow the disease, and set off for Chopp’s office.

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Nothing to lose

One of those studies was a 2015 groundbreaking study from Finland, called the FINGER trial. It found that using multiple strategies involving exercise, diet and intellectual and social stimulation could maintain or improve cognitive functioning in older people who did not have symptoms but were at risk for developing Alzheimer’s.

Researchers in the United States are conducting a similar study to explore the impact of those strategies on a more diverse population.

The Finnish trial and other studies highlight a diet with ample leafy green vegetables, berries, beans, nuts and fatty fish such as salmon. One version is called MIND, for Mediterranean-DASH Intervention for Neurodegenerative Delay.

A more recent trial, called EXERT, showed the importance of exercise for those already diagnosed with mild cognitive decline related to Alzheimer’s. Three-hundred sedentary older people with the condition were divided into two groups, one that performed aerobic exercise several times a week and another that did balance and stretching exercises.

Over 12 months, the study showed, both groups remained stable and did not experience cognitive declines. A comparison group that did not take part in the program deteriorated significantly, according to results released last year.

Some scientists say more research is needed, but for Laura D. Baker, an associate professor at Wake Forest University School of Medicine who led the study, the bottom line is clear: Regular, long-term exercise supported by a trainer or family members can slow cognitive decline. Patients with MCI should aim for two to 2 1/2 hours of low- or high-intensity exercise a week, she said.

Daniel Gibbs, 71, a retired Portland, Ore., neurologist who spent years caring for Alzheimer’s patients before being diagnosed himself with early-stage disease eight years ago, used to love hamburgers and other fried foods, but gave them up.

“I am all in on the lifestyle changes,” said Gibbs, an avid hiker and boater. “My hope is that I will die of something else first. I don’t think that is maudlin. Everyone knows that dying of Alzheimer’s is pretty unpleasant for everybody.”

Gibbs said he tries to live in the present. “I can’t live in the past so much because I can’t remember it,” he said. “And I have decided not to think about the future except to get it organized.”

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Portrait of survival

Like Gibbs, Chopp has embraced a brain-friendly diet shorn of processed foods and sweets. “No more Little Debbie or potato chips, and lentils and beans four times a week,” she said.

She takes long walks with Budhy, her Pomeranian husky mix. At one point, she made her 75-year-old husband take ballet lessons with her. “It was ugly,” he said of his technique.

On a recent day, Chopp pedaled furiously on a stationary bike at a recreation center, pushed a 65-pound sled around an inside track several times and slammed a 10-pound ball filled with sand onto the floor over and over.

But Chopp’s spiritual and emotional well-being is grounded in something she long resisted because she did not think she would be any good at it – painting. In the lower, light-filled level of her house, she paints colorful landscapes, portraits and abstract paintings. On the walls are a portrait of her great-nephew at 6 months old, and another of a woman on the beach with sprawling red hair. Painting helps her connect to something greater than herself, she said.

Granholm-Bentley believes Chopp’s efforts are paying off. “There may be a time when it won’t be enough,” Granholm-Bentley said. “But for now, it has been enough.”

Still, the illness is taking a toll. Chopp no longer drives at night. She often forgets what is on tap for the weekend. Sometimes, she puts ice cream in the pantry and salad in the freezer. And then there are the moments of pure panic.

“I am going to lose myself, for that is what a diagnosis of Alzheimer’s means,” she writes. “Saying I am filled with terror seems too mild.”

Even so, Chopp realizes she is fortunate to be able to afford the medical care she needs and pursue the activities she enjoys. Many people struggling with early Alzheimer’s, she knows, don’t get the care and attention they need – and may not even be diagnosed.

Studies show that Black Americans are up to twice as likely as Whites to develop Alzheimer’s and related dementias, but much less likely to be diagnosed. Hispanic Americans are 1.5 times more likely than Whites to have dementia.

“Adopting a vegetarian diet is very hard if you are just trying to survive,” Chopp said. Adding footsteps to the daily routine, she said, might be more feasible. As a lifelong educator, Chopp hopes her book will provide a road map for other patients while easing their despair.

“Most people assume, explicitly or implicitly, that the diagnosis brings immediate and absolute failure,” she writes. “And while these images may be the reality of the final stages of the disease, there are also people like me thriving – sometimes for years and years.”

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‘I got my life back’

Chopp and Gutis recently helped launch Voices of Alzheimer’s, an advocacy group, to promote the views of patients and try to gain access to treatments.

“We looked at the model of HIV,” said Gutis, referring to ACT UP, an activist group created in the 1980s to demand greater access to AIDS drugs. “There has got to be a place for those of us who are angry and don’t want to be polite.”

On a recent Zoom call, the organization’s board members – most of whom have MCI or moderate Alzheimer’s – angrily discussed Medicare’s refusal to cover Leqembi and similar drugs coming down the pike. The medications target a sticky protein in the brain called amyloid beta, a hallmark of Alzheimer’s. Leqembi, in a large clinical trial, reduced amyloid clumps in the brain and slowed cognitive decline by 27 percent.

Medicare has declined to cover the anti-amyloid therapies except in clinical trials, saying it wants to see more data on safety and effectiveness. The Department of Veterans Affairs has said it will cover Leqembi. James Taylor, a Voices of Alzheimer’s board member who cares for his wife, Geri, said, “As a vet, I could get the drug, but Geri can’t.”

Gutis, who is on Medicare and believes he has benefited from taking an anti-amyloid drug as part of an extended clinical trial, is about to lose access to the medication as the study ends. Now, he is trying to decide whether to spend down his savings to get Leqembi.

Eli Lilly, which manufactures an anti-amyloid treatment pending at the FDA, and Eisai have provided financial support for Voices of Alzheimer’s, according to the organization’s website.

The controversial treatments are roiling the Alzheimer’s field. Hailed by some doctors, the medications are dismissed by others who say removing amyloid will not help – and may severely harm – patients. Granholm-Bentley, one of Chopp’s medical advisers, is not a fan of the drugs because they can cause bleeding and swelling in the brain.

Chopp, while urging Medicare to cover Leqembi, does not know whether she would use it. “I have had such good luck with lifestyle interventions.”

Other advocates with early-stage illness are trying to reach out to medically underserved groups. Tony Gonzales, a 48-year-old retired radio personality and real estate manager who lives in Santa Maria, Calif., who was diagnosed with Alzheimer’s in his 40s, is trying to help other Hispanic people struck by the illness, especially those affected at a relatively young age.

“In the Hispanic culture, which I came from, we tend to be ashamed and embarrassed about Alzheimer’s,” he said. “When people had dementia, we put grandma in the backroom.”

When Gonzales was diagnosed with mild cognitive impairment two years ago, “I immediately thought, ‘I’m dying tomorrow,’ ” he said. Over time, he emerged from depression, adopted a strict diet and began to exercise strenuously. He lost almost 180 pounds.

“Slowly,” he said, “I got my life back.”

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A full canvas

Chopp doesn’t sugarcoat the future, which she knows could be grim. She worries about the impact on her family and wonders: “How much longer will I still be Rebecca?”

But Chopp is too busy to dwell on the imponderable. After she finishes her book, she plans to launch a big project: painting portraits of close friends and family members. She will write stories that describe “how I think of them and what I learned from them,” she said. As her memory ebbs, her husband and caretakers can read her the stories.

And someday, she said, her friends and relatives will have the paintings.

Photos for The Washington Post by Cassandra Giraldo.
Gonzales gives his artwork to his friends as gifts.