The one disease I fear most is Alzheimer’s, and I am sure that I am not the only one. Our fear of Alzheimer’s, which recent research suggests may have been the third leading cause of death in the pre-pandemic United States, far outranks our fear of heart disease and cancer, the first and second leading causes of pre-pandemic deaths.
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Though there are several other common types of dementia that affect old people, Alzheimer’s is by far the most ubiquitous. It is a progressive disease, and as I write there is no cure or treatment that can effectively control its symptoms.
Alzheimer’s is named for Dr. Alois Alzheimer, a German psychiatrist who, according to the National Institute on Aging, “noticed changes in the brain of a woman who died of an unusual mental illness.” Her symptoms included memory loss, language problems, and unpredictable behavior.
After she died, he examined her brain and found many abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary tangles.) These features, which Dr. Alzheimer observed in 1906, remain defining pathologies of Alzheimer’s.
One of the most confounding symptoms of advanced Alzheimer’s is aggressive behavior, thought to be brought on by the patient’s inability to communicate discomfort, pain, anger, hunger, and other physical or emotional states of distress or urgent need. That is one reason why many Alzheimer’s patients eventually end up in nursing homes or memory care facilities, where they can be properly looked after.
Our fear of Alzheimer’s, which recent research suggests may have been the third leading cause of death in the pre-pandemic United States, far outranks our fear of heart disease and cancer, the first and second leading causes of pre-pandemic deaths.
But whether in a nursing home, memory care facility, or family home, I wonder whether it is humanly possible to compassionately, effectively care for a beloved old person who suffers from a multifarious disease that remains beyond our healing arts. My paternal grandmother, Rose Latts Gilats Rose, who died of complications from Alzheimer’s at the age of eighty-nine, had a habit of pounding her fists into her thighs as she groaned in her wheelchair.
In her earlier life she had been a gentle, good-natured woman who loved her grandchildren; no one would have guessed that violent self-injury was lurking in her nature. Frankly, I hope it was not. I would like to believe that such a ferocious habit was just one more macabre symptom of Alzheimer’s.
Granny Rose’s favorite television character was Hopalong Cassidy, but like me, she also enjoyed watching All-Star Wrestling from six to seven o’clock on Saturday evenings. Though it still embarrasses me to admit it, during my early teens I was seriously hooked on that show.
After working the cash register at my father’s grocery store all day every Saturday, I could not wait to get home so that I could watch local wrestlers pretend to maul each other, often inflicting garden-variety injuries as they went. I loved professional wrestling so much that every Saturday during my lunch break, I would slip next door to Sansby’s drug store to browse and usually buy wrestling magazines, which I would pore over between customers.
There were wholesome wrestlers like Minnesota-bred Verne Gagne, who co-owned, along with promoter Wally Karbo, the Minneapolis-based American Wrestling Association, and there were evil wrestlers like Minneapolitan Krusher Kowalski and Canadian Tiny Mills, who were billed as Murder Incorporated when they wrestled as a tag team. All-Star Wrestling was a promotional vehicle for the American Wrestling Association’s Sunday cards, so there were never any upsets. The wholesome wrestlers always won, which made the evil wrestlers thrillingly angry.
Even today, I shudder with pleasure as I remember AllStar Wrestling host Marty O’Neill conducting after-match interviews with the losers. Kowalski and Mills, who both possessed outstanding tummies, towered over the diminutive, unassuming Marty, and as they shook their angry fingers at him, I was certain he would end up on the floor, the victim of an errant poke.
But he was brave. He always stood his ground and kept his cool, which years later helped earn him a place in the Minnesota Broadcasting Hall of Fame.
Marty also interviewed Gagne, winner of all his matches, who conducted himself as a perfect gentleman and never spoke angrily at or about anyone. In fact, Gagne was a quintessential Minnesota athlete, having won two NCAA wrestling titles as an amateur and eleven American Wrestling Association championships as a professional.
He was also an All–Big Ten football player at the University of Minnesota who was drafted by (but never played for) the Chicago Bears. He had an extraordinarily long and storied career, and throughout his life he was loved and respected for his many acts of kindness and charity.
Billy Bye, a longtime friend who met him when they both played football at the University of Minnesota, said, “Verne was a great man. It didn’t make a difference to Verne whether you were Hubert Humphrey or a plumber….He’d shake your hand and make you feel good to be around him.”
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When Verne Gagne was diagnosed with Alzheimer’s, his nature changed: he became someone whose family and friends no longer recognized. By the time he was eighty-two, he was living in the memory loss section of a local nursing home.
One of his fellow dementia patients was ninety-seven-year-old Helmut Gutmann, a medical doctor, enthusiastic sportsman, and classical musician who had fled Nazi Germany in 1936. Active and engaged throughout his life, Gutmann had served as a cancer researcher at the Minneapolis Veterans Administration Hospital for forty years and had played violin with the Bloomington Symphony Orchestra for twelve years. In their own dissimilar ways, both men had been model citizens who over their well-lived lives had significantly enriched their communities.
But according to numerous news reports, as neighbors in a communal living environment they were not neighborly. Their family members told journalists that they seemed to get on each other’s nerves, if such an idiom could apply to two elderly men with severe dementia.
On January 26, 2009, they had a serious altercation. No one knew what precipitated it, but it ended with Gagne hoisting Gutmann over his shoulder and flinging him to the ground in a classic wrestling slam. Gutmann was immediately taken to the hospital with a broken hip, which was successfully repaired.
A few days into his hospital stay he began refusing food and drink and died there on February 14, 2009. Neither man could recall the lethal incident. After Gutmann’s death, Gagne went to live with his daughter, and he died seven years later at the age of eighty-nine. Though Gutmann’s death was ruled a homicide by the Hennepin County medical examiner, the county prosecutor ultimately declined to press charges.
If this was murder, then we would have to conclude that the murderer was not a man but an indiscriminate, barbarous disease. No one who knew Verne Gagne thought him capable of murder; after the incident, Billy Bye told the Minneapolis Star Tribune, “This was not the real Verne.” Even Gutmann’s bereaved wife understood that.
But in the moment of the attack, Alzheimer’s seemed to spare certain deeply rooted parts of Gagne’s being, including but doubtless not limited to his wrestling skills, which he had honed day by day and week by week over three quarters of a century. By the time he retired, he had probably thrown many hundreds, if not thousands of body slams.
Without his intellect to palliate him, and no longer possessing a moral compass, Verne Gagne’s still-formidable physical powers overtook him. Alzheimer’s had reduced this living man to his basest instincts: all he had left was his reflexive urge to fight, though he could not have cognitively understood even that.
In Alzheimer’s disease, we humans have an unchecked beast that gradually, insidiously, and permanently destroys our ability to live well in old age. In Alzheimer’s disease we also have our society’s fastest growing pre-Covid illness. As I write, about six million Americans are living with diagnosed Alzheimer’s, but the Alzheimer’s Association expects that number to rise to thirteen million by 2050.
We have good reason to fear Alzheimer’s more than any other illness associated with aging: apart from environmental interventions like memory care facilities, there seems to be nothing we can do about it. If there is such a thing as an ageist disease, Alzheimer’s certainly is it.
While I have always had faith in the remarkable powers of science, lately I have found myself thinking of Alzheimer’s as a uniquely sinister form of science fiction: a thoughtless, random tool used by nature to cull the human population. Of all that could happen to those of us who have reached old age, Alzheimer’s is outstanding in its brutality.
Where is the hope?
Recently I have been reading a number of lay-audience articles about Alzheimer’s research, and they all seem to include one common observation: searches for cures, treatments, and preventive interventions have been excruciatingly slow. For more than a century these efforts have tried the patience of dedicated scientists who have nonetheless soldiered on vigorously after dead ends, detours, and affronts to their capabilities by investing agencies. I
f we understand that scientific discovery proceeds in small, incremental steps that spring from informed curiosity and irrepressible creativity, we can find hope. The longevity of these efforts, especially the fact that generations of scientists have made it their life’s work to try to tame the Alzheimer’s beast, is all the proof we need.
An October 2022 Mayo Clinic article titled “Alzheimer’s Treatments: What’s on the Horizon?” describes an impressive array of current scientific inquiries, including using monoclonal antibodies to “prevent beta-amyloids from clumping into plaques or remove beta-amyloid plaques that have formed”; using a drug that was initially developed as a cancer treatment to reverse memory loss in people suffering from mild cognitive impairment; and “production blockers” that may reduce the amount of beta-amyloid formed in the brain.
Simply reading about these efforts is inspiring, but nowhere in the article do the authors comment about whether any of them are likely to meet with success and, if they should, how long that might take.
Less than a year after this article appeared, in July 2023, the Food and Drug Administration fully approved lecanemab, a drug that in a clinical trial of “1,795 patients with early-stage, symptomatic Alzheimer’s” slowed the progress of the disease by twenty-seven percent by selectively targeting “the forms of amyloid protein that are thought to be the most toxic to brain cells.”
There have been too many times in my long life when I have made myself miserable by yearning for the impossible, and equipped with those memories, I have finally decided not to waste my future on futility.
“Would I like the numbers to be higher? Of course,” said Christopher Van Dyke, who led the trial, “but I don’t think this is a small effect.” Indeed, here we have an advancement that is not only a modest blessing in the near term but is also genuinely salutary because it paves the way toward more effective treatments.
I am at peace with this slow but reassuringly persistent process. I know that I may become demented in my last years, but now that I am settling into old age, that fear no longer preoccupies or overtakes me. There have been too many times in my long life when I have made myself miserable by yearning for the impossible, and equipped with those memories, I have finally decided not to waste my future on futility.
In the introduction to a recent edition of German Jewish writer Lion Feuchtwanger’s 1933 novel The Oppermanns, writer Joshua Cohen says that “there is a famous saying in Talmud, attributed to the sage Tarfon: ‘It is not your duty to finish the work, but neither are you free to neglect it.’” Tarfon was referring to the unending search to understand God, which is not so different from the search to harness Alzheimer’s disease.
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Excerpted from Radical Endurance: Growing Old in an Age of Longevity by Andrea Gilats. Published by the University of Minnesota Press. Copyright 2024 by Andrea Gilats. Used by permission.
