SAG HARBOR
June 2014
About nine months ago, when B. was diagnosed, I learned the numbers. Some 5.2 million Americans are living with Alzheimer’s. About 500,000 of those die of the disease each year, even as more than that get diagnosed: a new case every sixty-seven seconds. It used to be the sixth leading cause of death in the United States. Last year one study moved it up to third, just behind heart disease and cancer. Why? Because all too often, the researchers noted, a patient dies of an illness or condition that Alzheimer’s produces—like pneumonia, or organ failure—and doctors list that as the cause of death. If instead they listed Alzheimer’s in those cases—the root cause—the total would go way up, putting Alzheimer’s above chronic lung disease, stroke, and accidents. Way to go, right? That would mean millions die of it every year. But however you want to define the death toll, one in nine Americans age sixty-five or older has it: 11 percent of the senior population. That shoots up to 33 percent for all Americans eighty-five and older.
The number that really rocked me was this one: 200,000. That’s how many Americans under sixty-five have Alzheimer’s. They call it early-onset Alzheimer’s, as opposed to late-onset, which is everyone sixty-five and older. Early-onset is a genetic disease; late-onset is, too, but it’s complicated by lifestyle choices and aging.
I thought about that number a lot. My first reaction was anger and incredulity. In this whole country, only 200,000 people under sixty-five have early-onset Alzheimer’s, and B. gets targeted as one of them? How unfair is that? Who’s the manager in charge here? I want to talk to him right now.
Then I thought: wow, 200,000. That’s a lot of people. Imagine them all in one place, milling around together. Like Woodstock. Actually a lot of today’s 200,000 probably were at Woodstock. They’re just as spaced-out now as they were then.
That’s what passes for humor in the world of Alzheimer’s. And let me tell you one dead serious thing I’ve learned about that: whatever humor you can find here, no matter how off-color or corny—or raunchy—you take it. You need all the laughter you can get. A stupid joke won’t change the picture, but it might enliven a moment, and that’s where people with Alzheimer’s—and their caregivers—live. In the moment. So laugh if you can, at any excuse. Even if that moment is soon forgotten, replaced by the next.
Two hundred thousand. Imagine that. Two hundred thousand households where a family member under sixty-five wakes in a fog every morning, as B. does, and drifts through the day needing constant guidance from a loved one or hired caregiver. Yet that’s just a sliver of the overall Alzheimer’s population.
Here’s another number that blew me away. Of those 5.2 million Americans with Alzheimer’s, two-thirds are women. A woman of sixty-five has a 1-in-6 chance of getting Alzheimer’s at some point in her remaining years—versus a man’s 1-in-11 chance. The difference is in part because women tend to live longer, and the aging process seems to exacerbate the genetic and lifestyle factors associated with the disease.
Even more surprising than the high incidence of women getting Alzheimer’s is this: African Americans are twice as likely as Caucasians to get it. Ten percent over sixty-five have it. By the age of eighty-five, half of all African Americans have it. Why that’s so is one of the many mysteries of this insidious disease. Genetic risk factors seem to be involved. Diabetes, with its higher incidence in the black community, seems to increase susceptibility. So do hypertension and cardiovascular disease. But African Americans, it turns out, also tend to ignore the symptoms of Alzheimer’s longer than whites, either viewing them as part of the aging process or not wanting to learn what they fear and suspect is true. There’s a stigma to Alzheimer’s—a terrible stigma, greater than that for most diseases—and African Americans seem to feel it even more keenly than whites. So they often take their fears to a doctor years later than they should, too late for the changes in diet and exercise that might help stave off the symptoms.
B. has lived in the public eye for a long time, from her first days as a black fashion model in an all-white industry to her rise as B. Smith, restaurateur, cookbook writer, magazine publisher, and television food and style maven. For all the challenges we face with Alzheimer’s, one choice was easily made, almost as soon as B. got diagnosed. B. would live this part of her life in the public eye, too, as a spokesperson for all Americans struggling with Alzheimer’s, but especially for women, even more so women of color. From our first conversation about it, B. has never wavered from that intent, nor have I.
By telling her story here, B. might help others recognize the symptoms of Alzheimer’s sooner—and take action sooner. We knew all too well how mystifying and maddening those symptoms could be before we learned what they were. For more than a year, our marriage had been shaken by flare-ups and hurt feelings we’d never experienced before. We were the kind of couple that finished each other’s sentences, happy together all day and night—which, as partners in business as in life, we were. Suddenly we were arguing—over B.’s forgetfulness, and my anger in response. Raising voices, scoring points, slamming doors. I had begun to wonder if love had left the room. Maybe this marriage of nearly twenty years was coming to an end. Knowing that B. had the first symptoms of Alzheimer’s wouldn’t have done a thing to keep the disease from worsening as it did. But it would have given us another year, maybe two, of the old normal—or at least some semblance of it—and helped us cope with the memory lapses, and mood swings, when they occurred.
That was one reason for B. to go public. Another was to motivate African Americans to put the stigma of Alzheimer’s aside and get involved in a crucial way. For decades, too few of us have volunteered for research and clinical trials, so scientists have been kept from figuring out why we do get Alzheimer’s more often than whites. Without a representative sampling of African Americans in those trials, scientists can’t be sure that the drugs they’re trying to develop for the disease work as well—or at all—with us. There are reasons, historically, for being wary of those trials, but the truth is we’re hurting our people by not participating at this point. If we want our children and grandchildren not to have Alzheimer’s, more of us have to participate in those trials.
There was one more critical reason for B. and me to get out there. Finding and testing new drugs is expensive. Like $1 billion for each next candidate. We all know that drug companies make big profits when they come up with a winner. But those drugs save lives. So far with Alzheimer’s, and unfortunately for all of us, they haven’t come up with any winners. They’ve lost tens of billions of dollars trying to deal with the disease—not even to cure it, just to keep it in check. They’ve basically come up dry. Like it or not, the federal government has to do more than it’s doing: spend more taxpayer dollars helping the drug companies come up with the magic bullet. That means taxpayers pushing to see their money get spent that way.
By telling our story, B. and I have joined a campaign of doctors, scientists, and policy makers, among others, who see 2020 as the target date for managing Alzheimer’s and are doing all they can to hit that target. Not for curing it, not for preventing it—not yet for either of those. Just for catching it earlier, and maybe—maybe—keeping it in check so that patients live longer and keep some semblance of the lives they had before this awful disease afflicted them.
Since her diagnosis, by the way, I’m pleased to report that B.’s status has changed. She’s no longer one of those 200,000 early-onset victims of Alzheimer’s.
She’s turned sixty-five.