When I first began researching my book, The Inheritance
, a doctor told me that the human brain is the final frontier of science and medicine: that collectively, we know more about the outer reaches of the universe than the inner workings of the three pounds of gray matter huddled inside our skulls.
The longer I spent working on this book, the more I came to realize the truth in his words. For thousands of years, likely as long as human beings have walked the earth, Alzheimer’s disease has been quietly ravaging our brains — and for most of that time, we’ve been looking outward, and missing the point.
Of course, we didn’t always know what it was, or call it Alzheimer’s disease. We called it “senility” or “hardening of the arteries” or — in the case of my aunt, who is prone to malapropisms, “old-timer’s disease.” But it has been there, long before it was identified by its namesake German psychiatrist in 1906, and long before the 1960s, when a trio of British scientists confirmed that Alzheimer’s is what causes most old-age dementia. It was described by a physician employed under Roman Emperor Marcus Aurelius. It was probably the affliction Shakespeare
had in mind when he created King Lear.
With a history that formidable, it’s stunning that today, 111 years after Dr. Alzheimer attached his name to the disease, we stand on the brink of stopping it. Think about that for a moment: for thousands of years, this insidious condition has been stalking and killing people, and now we finally have a chance to end it before another generation is lost.
The timing couldn’t be better. As the baby boomer population ages, the potential for Alzheimer’s to bankrupt our health care system looms large. Currently, almost one in five Medicare dollars is spent on people with Alzheimer’s and other dementias. By 2050, it will be one in every three dollars. Right now, total payments for health care, long-term care, and hospice are about $236 billion for this population — and Medicare pays for just under half of it.
The United States’ first baby boomer turned 65 on Jan. 1, 2011. Since then, about 10,000 people hit that milestone every day. One in nine people who are 65 or older has Alzheimer’s. By the time you hit 85, it’s almost one in three, so you do the math. Forget about Zika, Ebola, or any kind of super flu: Alzheimer’s is the medical pandemic of our time. It kills more people than breast and prostate cancer combined, and it doesn’t care about your intellect, your nationality, your power, or your pocketbook.
World leaders are finally beginning to take notice. In 2013, attendees at the G8 dementia summit set a goal of finding a viable treatment by 2025. At the time, I was about a year into writing The Inheritance
, which follows the race to find a prevention therapy through the lens of a family stricken with a rare genetic mutation guaranteeing they will develop the disease in their 40s. That family, the DeMoes of Tioga, North Dakota, volunteered to become the test subjects of experimental drugs aimed at halting the disease for the rest of us.
The doctors I interviewed — all of whom had dedicated their careers to finding the answer to the Alzheimer’s riddle — were visibly nervous about the deadline. It was a “moon shot” statement: publicly setting a dramatically ambitious goal without knowing if it could actually happen, much as John F. Kennedy did in 1961 when he called for the United States to send a man to the moon and back before the end of the decade.
So it is particularly dramatic that now, just four years later, those same doctors are optimistic — albeit cautiously optimistic — that science will achieve its goal. Advancements in brain imaging are allowing them to watch how experimental drugs are working in a living brain with Alzheimer’s, something that wasn’t possible until 2004. That window on the disease, in turn, allows them to better refine their targets, adjust, and try again. With each try, they move closer to their goal, for Alzheimer’s research, like football, is a game of inches. And today, they believe a legitimate treatment is within sight — most likely one that will go through many subsequent upgrades, but still: a treatment that stops or delays the disease. This would be an astonishing achievement in human history.
Forget about Zika, Ebola, or any kind of super flu: Alzheimer’s is the medical pandemic of our time.
But what I can’t forget is that this milestone, whenever we reach it, will come at a very high price. I started researching my book in 2012. The DeMoe family was doggedly supportive of my efforts — even when I examined some deeply personal, often painful parts of their lives. They wanted me to paint a true picture, and I hope I have done that. One of my favorite family members wrote me a note of encouragement as I began writing the first draft, and it has hung over my desk ever since. She didn’t live to see a treatment, or even the first draft I was writing, but she never doubted that it would come — even though I sometimes did.
President Kennedy also didn’t live to see the fulfillment of his challenge. I wonder, sometimes, if he ever questioned the speech, if he truly thought that we’d see an American on the moon before we saw 1970. I’m a natural pessimist, so such bold statements worry me. I think in terms of failures and jinxes. But I’ve learned that it’s often through bold strokes of bravado — mixed with heavy doses of hard work and a sprinkling of luck — that advancements get made, and that success almost always comes after repeated failure.
About four years ago, as part of my research, I interviewed a neuroscientist who barely escaped the Soviet Union in 1979. Through a series of serendipitous circumstances, he landed at the NIH, where he became the first person to clone a genetic mutation that causes Alzheimer’s disease — a critical stepping stone to where we are today. He didn’t know it at the time, but he was racing against 20 other research teams who were trying to accomplish the same goal.
Had he known, he said, he would not have tried to clone the gene, because he is noncompetitive by nature. He was merely trying to please his boss to thank him for the opportunity to practice science in America. At the time, he didn’t even know how to spell “Alzheimer’s.”
What struck me was his confidence that such an elusive answer would undoubtedly be found.
“If so many people are working on the problem, it will be solved. I work in science not for competition, not because I want to be first in the finish line, but because I am curious about this problem,” he said.
At several turns, I found people who dedicated their lives to answering impossible questions, even at the risk of their own careers, and sometimes at the expense of their marriages. I found a family repeatedly thwarted by science, refusing to accept Alzheimer’s as their fait accompli. And I began to realize: this is the blueprint for how we conquered other frontiers.
This is how we win.
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’s work has appeared in publications around the world, including the Washington Post
, Los Angeles Times
, and the Associated Press
. A native of Boston, she now lives in Pennsylvania. The Inheritance
is her first book.