The Forgetting: Understanding Alzheimer’s: A Biography of a Disease. David Shenk
you bring your lunch today, Greta?”
“I don’t think so. I usually don’t bring my lunch here.”
“Yes, you do. You bring cereal.”
Irving waited for Greta to recollect her routine, but she could not. An elegant, shrunken woman with short cropped hair, dark eyebrows, and a supple, leathery face, Greta did not look even remotely like someone in decline. Her eyes still sparkled and her voice had spunk. She spoke without hesitation and in full, clear sentences. There was no clue from her cadences that her brain was under attack.
Paying close attention, though, one could tell that something was not right. For example, in a conversation about Japan, Greta very clearly explained that she had been there a number of times. She discussed the temples of Kyoto, which she enjoyed, and the food, which she did not.
Then, about an hour later, the subject of Japan came up again. This time, she said matter-of-factly, “Japan—never did get there. Couldn’t get in.”
These hiccups in logic were typical, I now recognized, of someone beginning to advance past the very earliest stages of the disease. She wasn’t very far along yet, and most of her brain was still working quite well; but her symptoms were no longer strictly limited to the classic short-term memory loss that usually signals the disease’s onset. Occasionally, now, a queer incongruity would creep in.
Standing off to one side of the table was Judy Joseph, the co-leader, with Irving Brickman, of this support group. About a year earlier she had been introduced to Irving in the New York offices of the Alzheimer’s Association, where each had come to see what, if anything, could be done about this ominous new social phenomenon. Suddenly, it seemed, Alzheimer’s disease was everywhere. Nursing home dementia units were filling beyond capacity. Middle-aged children were moving back home to take care of their parents. Community police were regularly being phoned to help track down wandering relatives. The disease was cropping up continually in newspaper articles and everyday conversation. Perhaps most tellingly, a vibrant Alzheimer’s consumer market was springing up—products like automatic medication dispensers (no memory required!), wireless tracking devices for wanderers, and even a Stovetop fire extinguisher designed explicitly for people who might forget to turn off the range.
All of a sudden, everyone seemed to know someone touched by Alzheimer’s. Partly, this was due to a shift in public conception of senile dementia. Only in the mid-1970s had doctors started to realize that senility is not an inevitable process of brain aging and decay but a recognizable—and perhaps one day treatable—disorder. Gradually, this perception also started to seep into the general consciousness: Senility is a disease.
Since then, there had been a staggering rise in actual cases of Alzheimer’s, corresponding to a vast increase in the elderly population. People were now living much longer lives. Longer lives meant more cases of Alzheimer’s. Since 1975, the estimated number of Alzheimer’s cases in the U.S. had grown tenfold, from 500,000 to nearly 5 million. Worldwide, the total was probably about three times that figure. In the absence of a medical breakthrough, the gloomy trend would not only continue, but would also get much, much worse.
The Roman poet Virgil wrote in the first century B.C., “Time wastes all things, the mind, too.” He was partly right. Scientists do not believe that Alzheimer’s is an inevitable consequence of aging. Many people will never get the disease regardless of how long they live. But aging is by far the greatest risk factor. It is almost unheard of in people aged 20–39, and very uncommon (about one in 2,500) for people aged 40–59. For people in their sixties, the odds begin to get more worrisome. An estimated and so on have Alzheimer’s or a closely related dementia. The risk accelerates with age, to the point where dementia affects nearly half of those eighty-five and over.
• 1 percent of 65-year-olds
• 2 percent of 68-year-olds
• 3 percent of 70-year-olds
• 6 percent of 73-year-olds
• 9 percent of 75-year-olds
• 13 percent of 77-year-olds
So, as the twentieth century came to a close, a shadow legacy was rapidly becoming apparent—the dark, unintended consequence of the century’s great advances in hygiene, nutrition, and medicine. Life spans in industrialized nations had nearly doubled over the previous one hundred years, and the percentage of elderly among the general population had more than tripled. In the process, the number of cases of senile dementia mushroomed. A hundred years before, it had not even been a statistical blip. Paradoxically, in the full blush of medical progress of the twentieth century, it had blossomed into a major public health problem.
Most strikingly to social workers like Judy and Irving, the number of people who had Alzheimer’s and who knew they had Alzheimer’s had exploded. A huge portion of the newly diagnosed cases were in the very early stages of the disease. “This is something new in the field,” Irving explained. “Most people never before realized that there is an early stage of Alzheimer’s. I had worked with the more advanced stages, but when I came into this it was overwhelming for me. It’s very hard to get used to a normal person who happens to have dementia. It’s a whole different ballgame.”
Judy and Irving recognized, along with many others in the national Alzheimer’s community, that something had to be done to help this emerging new constituency: early-stage dementia sufferers still functioning well enough to fully understand what lay ahead. With the assistance of the Alzheimer’s Association, they formed a support group at Freund House. “Our goal,” explained Irving, “is to try to help these people live a quality life, to help them gain some coping mechanisms for their deficits, and to help them feel better as human beings.” While scientists did battle with this disease, victims and their families had the opposite task: to make a certain peace with it, to struggle to understand the loss, come to terms with it, create meaning out of it.
Alzheimer’s is what doctors call a disease of “insidious onset,” by which they mean that it has no definitive starting point. The plaques and tangles proliferate so slowly—over decades, perhaps—and silently that their damage can be nearly impossible to detect until they have made considerable progress. Part of the function of any early-stage support group must be to try to make sense of this strange new terrain that lies between healthy and demented. Where, in specific behavioral terms, is the person overshadowed by the disease?
Individually and collectively, the Freund House group was trying to find out, and to make sense of the answer. “My wife gets frustrated with me,” Arnie related to his fellow group members, “and she is right to be frustrated. She asks me to put a can in the recycling … and I don’t do it. She says, ‘I know this is because of your illness, that this is not you.’”
Sadie nodded her head in recognition. “My mother had this, too,” she said. “Now I know what it was like for my father to take care of her. We used to get so mad at him when he would be short with her.”
Coping with a particular disability was one thing; trying to cope with an ever-shifting invisible illness, though, was a challenge unique to Alzheimer’s disease. In this early period, the insidiousness itself was often the most troubling thing about the disease—arguably even a disease unto itself As a group, these new patients could gain a more confident understanding of their disease, and tackle issues that would seem impossibly difficult to one isolated, failing person.
Driving, for instance. The first big question they confronted right after forming the group was: Should they continue, in this blurry period of semi-normalcy, to pilot massive steel boxes at thirty and forty and fifty miles per hour down roads lined with bicycles and toddlers? Studies showed conclusively that Alzheimer’s is, overall, a major driving hazard. Bystanders had been killed by Alzheimer’s patients making a lapse in judgment or being overcome momentarily by confusion. But the law had not yet caught up with this reality. Even with a diagnosis, no doctor or judge had ever confiscated a license. Families were forced to decide on their own when driving was no longer appropriate.
Together, after much deliberation, the group decided that it had already become too