Turning to Books to Grasp the Most Ungraspable Disease

When my family moved to the United States in 1976, the country was in the midst of what could be called the Great Alzheimer’s Awakening. Research conducted that decade suggested that dementia, far from being rare, was actually one of the leading causes of death in American society — just behind heart disease and cancer.

Since that time, as more and more of us survive into old age, that finding has taken on the texture of fact. Today, most everybody knows someone with dementia. By the midpoint of this century, the condition is expected to afflict more than 15 million Americans and more than 100 million people worldwide, likely overtaking cancer as the second most common pathway to death. In polls, older individuals say they fear dementia more than cancer. It is more feared than death itself.

Lewis Thomas, the physician and essayist, called dementia “the worst of all diseases.” No doubt my mother would have agreed. Even when it was clear that my father had developed dementia, she never uttered the word “Alzheimer’s,” the most common type. The only time she mentioned the name of the disease was when she first asked me to take my father to a neurologist. As with most people, dementia evoked for my mother a visceral fear. The loss of control and social stigma, the eventual total dependency and need for institutional care: This was indeed worse than death.

For a condition that is so ubiquitous and so feared, good books on dementia are surprisingly hard to find. Some of the best, I’ve come to learn, deal with particular symptoms, like memory loss, rather than the disease itself.

Suzanne Corkin’s 2013 book “Permanent Present Tense” falls into this category. Corkin, a research psychologist, presents a fascinating case study of her patient, Henry Molaison, a man with no memory. Molaison — or H.M., as he was known in the scientific literature until his death in 2008 — was a 27-year-old with severe epilepsy when he underwent radical brain surgery in 1953 to cure his intractable seizures. His Yale surgeon, William Scoville, drilled two holes in the skull just above his eyes and suctioned out a small cupful of tissue from both his medial temporal lobes. The excised tissue included the olfactory lobes, which regulate smell, the amygdala, which controls emotions, and half of the hippocampus, whose function was not properly understood at the time.

Though Molaison’s seizures largely abated after the operation, he developed an even bigger problem, which manifested almost immediately after his surgery. He couldn’t remember who his hospital caregivers were, no matter how many times he was introduced to them. He got lost going to the bathroom, no matter how many times he was shown where it was. Daily events vanished from his mind almost as soon as they had occurred. The condition was called anterograde amnesia.

His amnesia was eventually traced to damage to the hippocampus, a structure “critically concerned in the retention of current experience,” as Scoville and a colleague later wrote. His existing memories remained largely intact. He could still remember vacations with his parents, jobs he’d held as a teenager, going target shooting with his father and other events from his childhood. Yet, like most patients living with dementia, he could form no new long-term memories. With no new memories, he lived in a perpetual present, disconnected from his past (or at least the past after his surgery) and his future. It was “like waking from a dream,” he told Corkin. “Every day is alone in


Though dementia today is better understood than ever before, the therapeutic landscape for the condition has only recently gotten a bit less bleak. In early June, the F.D.A. approved the first new medication for Alzheimer’s disease in nearly two decades. And though the approval process has been subject to controversy and it’s not clear how well the drug actually works, the decision represents some movement after hundreds of experimental remedies have failed in hundreds of clinical trials. Yet it’s still accurate to say that dementia remains the only chronic and widespread medical scourge for which there are literally no effective treatments.

A recent book that explores this Sisyphean search for a cure is “In Pursuit of Memory: The Fight Against Alzheimer’s,” by Joseph Jebelli, published in 2017. A British neuroscientist, Jebelli travels around the world to discover the latest in dementia research. He goes to Papua New Guinea, Japan, India and China to learn about experimental (but mostly futile) treatments, including stem cells, blood transfusions and repurposed cancer drugs. In the end, he acknowledges how little medicine currently has to offer patients living with dementia, even as he holds out hope (far-fetched, in my view) for a cure in 10 years.

In the absence of effective treatments, patients with dementia must be cared for. To understand how we should do this, one of the best books I’ve read is the theologian John Swinton’s 2012 guide, “Dementia: Living in the Memories of God.” Swinton, chair in divinity and religious studies at the University of Aberdeen, focuses on the ways the standard model of dementia, which views the disease almost exclusively as a consequence of brain damage, is incomplete. Patients with dementia, Swinton notes, can have varying degrees of brain damage. Some whose autopsies revealed significant damage manifested little clinical impairment while alive. Others with only minor neuropathology had full-blown symptoms. Therefore, Swinton argues, it is clear that social environments, through implicit messaging or explicit neglect, worsen the demented condition. What is called for is an approach based in respect and dignity.

Fiction might be best suited for instilling the empathy to think differently about the disease. Two excellent autobiographical novels I’ve read on the topic are “We Are Not Ourselves,” by Matthew Thomas, and “Scar Tissue,” by Michael Ignatieff. Both describe the harrowing descent of a family member into early dementia. Thomas’s 2015 novel revolves around Eileen Leary, a tough Irish American nurse yearning to break the middle-class mold in which her life is set when her husband, Ed, a neuroscientist, develops early-onset Alzheimer’s. Thomas describes his slow deterioration and the ravages inflicted on Eileen and their son, Connell, in drawn-out moments and exquisite detail. In an especially harrowing scene, Eileen stays up all night watching her once brilliant husband struggle with the simple task of tabulating the final grades in his community college class. Though the narrative sometimes gets bogged down in minutiae, it is as unsparing an account of Alzheimer’s as I have ever read.

In “Scar Tissue,” a 1993 Booker Prize finalist, an unnamed narrator gives a first-person account of the precipitous decline of his mother from dementia (though her condition is never explicitly named). “She remembers captions of New Yorker cartoons,” he says, lamenting that “it is what happened five minutes ago that is slipping away.” It is a predicament with which dementia caregivers are all too familiar. Yet, despite his mother’s descent into oblivion, the narrator insists she be treated with dignity. “You keep telling me what has been lost,” he tells her neurologist, “and I keep telling you something remains.”

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