The Forgetting Page 3

“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 dangerous. Collectively, they gave up this highly
charged symbol of autonomy and competence. On this shaky new terrain, a person’s independence could no longer be taken for granted.

  In the summer of 1984, at the age of eighty-five, E. B. White, the tender essayist and author of Charlotte’s Web, became waylaid by some form of dementia. It came on very swiftly. In August, he began to complain of some mild disorientation. “We didn’t pay much attention,” recalls his stepson, Roger Angell, “because he was a world-class hypochondriac.” But just a few weeks later. White was severely confused much of the time. By the following May, he was bedridden with full-on dementia, running in and out of vivid hallucinations and telling visitors, “So many dreams—it’s hard to pick out the right one.” He died just a few months after that, in October 1985.

  An obituary in the New York Times reported White as having Alzheimer’s disease, but that appeared to miss the mark. In fact, he was never even informally diagnosed with the disease, and his symptoms strongly suggested another illness. The rapid onset of the confusion and the abrupt shift from one stage to the next were classic signs of multi-infarct dementia, the second-most common cause (15 percent) of senile dementia after Alzheimer’s (60 percent). Multi-infarct dementia is caused by a series of tiny strokes. Its victims can have much in common with those of Alzheimer’s, but the experience is not as much of an enigma. Its cause is known, somewhat treatable, and, to a certain extent, preventable (diet, exercise, and medication can have an enormous impact on risk of strokes). Its jerky, stepwise approach is easier to follow and understand as symptoms worsen.

  Alzheimer’s disease is not abrupt. It sets in so gradually that its beginning is imperceptible. Creeping diseases blur the boundaries in such a way that they can undermine our basic assumptions of illness. Alzheimer’s drifts from one stage to the next in a slow-motion haze. The disease is so gradual in its progression that it has come to be formally defined by that insidiousness. This is one of the disease’s primary clinical features, one key way that Alzheimer’s can be distinguished from other types of dementia: those caused by strokes, brain tumor, underactive thyroid, and vitamin deficiency or imbalance in electrolytes, glucose, or calcium (all treatable and potentially reversible conditions).

  It is also nearly impossible to officially diagnose. A definitive determination requires evidence of both plaques and tangles—which cannot be obtained without drilling into the patient’s skull, snipping a tiny piece of brain tissue, and examining it under a microscope. Brain biopsies are today considered far too invasive for a patient who does not face imminent danger. Thus—Kafka would have enjoyed this—as a general rule, Alzheimer’s sufferers must die before they can be definitively diagnosed. Until autopsy, the formal diagnosis can only be “probable Alzheimer’s.”

  These days, a decent neuropsychologist can maneuver within this paradox—can make a diagnosis of probable Alzheimer’s with a confidence of about 90 percent—through a battery of tests. The process almost always begins with this simple quiz:

  What is today’s date?

  What day of the week is it?

  What is the season?

  What country are we in?

  What city?

  What neighborhood?

  What building are we in?

  What floor are we on?

  I’m going to name three objects and I want you to repeat them back to me: street, banana, hammer.

  I’d like you to count backwards from one hundred by seven. [Stop after five answers.]

  Can you repeat back to me the three objects I mentioned a moment ago?

  [Points at any object in the room.] What do we call this?

  [Points at another object.] What do we call this?

  Repeat after me: “No ifs, ands, or buts.”

  Take this piece of paper in your right hand, fold it in half, and put it on the floor.

  [Without speaking, doctor shows the patient a piece of paper with “CLOSE YOUR EYES” printed on it.]

  Please write a sentence for me. It can say anything at all, but make it a complete sentence.

  Here is a diagram of two intersecting pentagons. Please copy this drawing onto a plain piece of paper.

  This neurological obstacle course is called the Mini Mental State Examination (MMSE). Introduced in 1975, it has been a part of the standard diagnostic repertoire ever since. The MMSE is crude but generally very effective in detecting problems with time and place orientation, object registration, abstract thinking, recall, verbal and written cognition, and constructional praxis. A person with normal functioning will score very close to the perfect thirty points (I scored twenty-nine, getting the date wrong). A person with early-to-moderate dementia will generally fall below twenty-four.

  The very earliest symptoms in Alzheimer’s are short-term memory loss—the profound forgetting of incidents or conversations from just a few hours or the day before; fleeting spatial disorientation; trouble with words and arithmetic; and some impairment of judgment. Later on, in the middle stages of the disease, more severe memory problems are just a part of a full suite of cognitive losses. Following that, the late stages feature further cognitive loss and a series of progressive physical disabilities, ending in death.

  One brilliantly simple exam, the Clock Test, can help foretell all of this and can enable a doctor to pinpoint incipient dementia in nine out of ten cases. In the Clock Test, the doctor instructs the patient to draw a clock on a piece of paper and then draw hands to a certain time. Neurologists have discovered that patients in the early stages of dementia tend to make many more errors of omission and misplacing of numbers on the clock than cognitively healthy people. They’re not entirely sure why this is, but the accuracy of the test speaks for itself.

  A battery of other performance tests can help highlight and clarify neurological deficiencies. The Buschke Selective Reminding Test measures the subject’s short-term verbal memory. The Wisconsin Card Sorting Test gauges the ability to deduce sorting patterns. In the Trail Making Test, psychomotor skills are measured by timing a subject’s attempt to draw a line connecting consecutively numbered circles. Porteus Mazes measure planning and abstract-puzzle-solving ability.

  If the patient performs poorly in a consistent fashion, the next step will likely involve elaborate instruments. Conveniently for physicians, Alzheimer’s disease always begins in the same place: a curved, two-inch-long, peapod-like structure in the brain’s temporal lobes called the hippocampus (the temporal lobes are located on either side of the head, inward from the ear). Doctors can get a good look at the hippocampus with a magnetic resonance imaging (MRI) scanner, which bombards the body with radio waves and measures the reflections off tissue. A simple volume measurement of the hippocampus will often show, even in the very early stages of Alzheimer’s, a pronounced decrease in volume, particularly in contrast with other brain structures. By itself, the MRI cannot diagnose Alzheimer’s. But it can add one more helpful piece to the diagnostic puzzle.

  Other advanced measurements might also help: A positron emission tomography (PET) scan may detect a decrease in oxygen flow or glucose metabolism in the same area. A single photon emission computed tomography (SPECT) scan may catch decreases in blood flow. A moderate to severe amount of slowing in the alpha rhythm in an electroencephalogram (EEG) is often characteristic of dementia. But such measurements are generally not required for a tentative diagnosis. In the face of convincing results from memory and performance tests, and in the absence of any contravening evidence—disturbance in consciousness, extremely rapid onset of symptoms, preponderance of tremors or other muscular symptoms, difficulties with eye movements or reports of temporary blindness, seizures, depression, psychosis, head trauma, a history of alcoholism or drug abuse, any indication of diabetes, syphilis, or AIDS—a diagnosis of probable Alzheimer’s is rendered.

  Alzheimer’s disease. The diagnosis is a side-impact collision of overwhelming force. It seems unreal and unjust. After coming up for air, the sufferer might ask, silently or out loud, “What have I done to deserve this?” The an
swer is, simply, nothing. “I remember walking out of the clinic and into a fresh San Diego night feeling like a very helpless and broken man,” recalled Bill, a fifty-four-year-old magazine editor, to writer Lisa Snyder. “I wondered if there was anything for me to live for.”

  It can take a while to sink in. Experienced doctors know not to try to convey any other important information to a patient or family member on the same day that they disclose the diagnosis. They put some helpful information into a letter, and schedule a follow-up.

  There is no cure for Alzheimer’s at the present time, and not much in the way of treatment. Historically, the one saving grace of the disease over the years has been that many, if not most, of the people who acquire the disease do not comprehend what is about to happen to them and their families. Now, for better or worse, that has changed. More and more are learning at the earliest possible opportunity what they have, and what it means.

  What will they do with the advance knowledge? It is not an easy question. Will they use the time left to get their affairs in order and to prepare themselves emotionally for the long fade? Or will the knowledge only add to the frustration and force them into a psychological spiral to accompany the physiological one?

  The Freund House early-stage support group was one experimental approach to tackling such unknowns. When Judy and Irving created it in 1997, they weren’t sure it would work. Could people struggling with memory loss, spatial disorientation, and confusion actually strike up a meaningful relationship with a group of strangers? They had to assemble just the right team. “We had to turn many people away,” said Judy, “because we didn’t feel they were right for a support group. They weren’t introspective enough. They weren’t bothered enough.”

  The group was also temporary by design. As participants lost the ability to contribute, they would be eased out of the group, and perhaps admitted to a middle-stage group like the one that Judy ran down the hall. In that group, volunteer caregivers always accompanied patients to the restroom and back, because otherwise they would get lost. Most, not all, still responded to their own name. After a cafeteria-style lunch, everyone came together in a circle to sing fun songs together, like the theme from Barney: