The Inheritance: A Family on the Front Lines of the Battle Against Alzheimer's Disease - Softcover

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Niki Kapsambelis was born and raised in Boston, Massachusetts. She worked for several years as a newswoman for the Associated Press in New England, Los Angeles, and Pittsburgh. Her work has appeared in publications around the world, including The Washington Post, Los Angeles Times, and People magazine. She lives in Pennsylvania. The Inheritance is her first book.

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The Inheritance

One

THE ENEMY WITHIN

WALK INTO A shopping mall. An amusement park. An auditorium of parents gathered for a school play. Within this crowd, there will be someone—in fact, several people—who are directly and irreversibly affected by Alzheimer’s disease.

In the United States, Alzheimer’s is the sixth-leading cause of death. Next to cancer, there is no condition more feared by human beings than Alzheimer’s, for it means more than a slow death; it robs its victims of the key components of their humanity. They lose shared experiences; they fail to recognize their most cherished loved ones; they forget even their proudest accomplishments. The stress of caring for an Alzheimer’s patient has decimated close-knit families, ended happy marriages, snapped the tensile bond between parents and children. And the disease is as baffling as it is unforgiving.

An estimated 24 to 36 million people worldwide—5.3 million in the United States alone—suffer from the disease or similar dementias. But Alzheimer’s is the least understood of all major fatal illnesses, frequently mistaken for other conditions, especially depression if the patient is young. Only one in four people who have the disease are actually diagnosed. None of them can be cured.

Once thought to be relatively rare, Alzheimer’s is now known to be the leading cause of age-related dementia, and science is only beginning to grasp how common—and how lethal—it really is. For it is always fatal: If patients do not die from secondary causes, such as pneumonia, the disease will eventually move from erasing memory and language to shutting down involuntary functions, such as breathing and swallowing.

In the developed world, most major causes of death—including cancer, heart disease, and AIDS—have undergone great strides in treatment across the past quarter century. People do sometimes survive these diseases. But to date, science has been unable to make any kind of dent in Alzheimer’s. In fact, the problem is actually growing, due to the population bubble created by aging baby boomers.

It is a disease that ignores celebrity, income, character, and gender. President Ronald Reagan had it, and so did one of his most controversial allies, British Prime Minister Margaret Thatcher. So have movie stars, literary figures, sports heroes, criminals, humanitarians, geniuses, and dullards. It has claimed victims among the most wealthy, powerful, and famous: Rita Hayworth, Norman Rockwell, E. B. White, Sugar Ray Robinson, Charlton Heston, Glen Campbell.

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For such a formidable enemy, Alzheimer’s managed to keep a low profile for a surprisingly long time. The disease was first identified in 1906 by its namesake, Alois Alzheimer, a German psychiatrist who was also a neuropathologist, meaning he specialized in diseases of the brain and nervous system. But descriptions of similar symptoms have appeared in literature dating back to ancient times.

In the second century, Roman emperor Marcus Aurelius employed a Greek-born physician who used the term “morosis” to describe dementia. He described people afflicted with this condition as “some in whom the knowledge of letters and other arts are totally obliterated; indeed they can’t even remember their own names.”

In recent years, better diagnostic tools have allowed doctors to understand two sobering facts about the way they have approached Alzheimer’s disease: First, that senility is not a normal part of the aging process; people who were once generally described as “senile” often actually had Alzheimer’s, meaning it is a much more widespread disease than anyone realized. And the second fact, which is more frightening, is that no current medical intervention can reverse it, or even slow it down, because for most of the time science has known about Alzheimer’s, there has been no way to see it coming until it has already wreaked havoc within the walls of the brain.

From 1906, when Alois Alzheimer first described the disease, until well into the twenty-first century, diagnosing Alzheimer’s disease in living patients was little more than an educated guess. Doctors relied on clinical tests, asking questions about the patient’s memory and ability to function. Though these tests depended on the patient’s honesty, doctors might separately verify answers with close friends or family members. There really weren’t objective physical tests, although there were some telltale physical signs, such as a shuffling walk. Mood changes could occur, too; aggression, hallucinations, and depression were common.

But all of these symptoms can also point to other afflictions: meningitis, brain trauma, stroke, syphilis, and medication side effects can produce similar results. Even sleep apnea and urinary tract infections can cause confusion. And while Alzheimer’s disease is the leading cause of dementia, accounting for 60 to 80 percent of all cases, other causes exist, too, such as Parkinson’s and Huntington’s diseases. The word “dementia” is a general catch-all term encompassing many abnormalities.

A study of 852 men diagnosed with Alzheimer’s disease from 1991 through 2012 found that the diagnosis was wrong one-third of the time, correct one-third of the time, and partially wrong—in other words, the patient had a mixture of diseases—one-third of the time. And in situations where a patient is young or a doctor has limited experience with memory disorders, the diagnosis becomes even more elusive.

For most of the time science has known about the disease, a true, definitive diagnosis of Alzheimer’s—not probable Alzheimer’s—could only happen after death, when a neuropathologist examined brain samples under a microscope to confirm the presence of amyloid plaques and tau tangles, the abnormal proteins that are the disease’s grim signature. Plaques are sticky, microscopic clumps of stray amyloid proteins that form outside the brain cells and possibly prevent the cells from signaling each other. Tangles occur inside the brain cell. They are twisted fibers of the tau protein, which—in its normal state—helps transport nutrients. When its strands begin to twist, they choke the transport system and the cell dies.

Current consensus within the Alzheimer’s research field holds that early intervention is key; by the time a person shows what we think of as mild symptoms, such as occasional forgetfulness, the brain may have reached a tipping point from which it will not return. But just how far in advance a doctor would need to give a treatment isn’t known. Is ten years before the onset of symptoms soon enough? Should it be sooner? Can it be later? If scientists were working with a patient who knew that he would develop Alzheimer’s at a specific age, they could answer these questions faster.

So even as they search for a viable treatment, researchers also continue to seek out ways to predict who the disease will strike. If they know who will someday get Alzheimer’s, they want to treat that person before he begins to slip away, much the way possible cardiac patients are now given cholesterol-lowering medication to help them avoid heart attacks. But to find such a...