America's Frightening Alzheimer's Epidemic
When I was about 11 years old, I saw an advertisement on TV that stayed with me. A beautiful woman in her 40s faces an elderly woman across a coffee table. The older woman beams at the younger and says, "You seem like such a nice girl." The camera shifts its focus to the face of the younger woman, who has tears welling up in her eyes. "Thanks, Mom," she says. The elder woman gives her daughter a quizzical look, and then stares vacantly into the distance.
In 2000, when I first learned my mother had been diagnosed with Alzheimer's, the only thing I knew about the disease was that one day I'd be starring in my own version of that commercial. At that point, my mother was just a bit forgetful. We'd make plans to cook an elaborate meal and, a few hours later, she wouldn't recognize the shopping list. A few months ago, however, I was visiting my parents, and it finally happened. "Who is your mother?" she asked, in a friendly voice, as I helped her dress. "You are," I said, laughing. "Really?" she asked, her English accent magnifying her astonishment. "How old are you?"
One in eight Americans who are 65 years old or older has Alzheimer's disease, according to the Alzheimer's Association's 2008 Facts and Figures Report (www.alz.org). By 2030, due to the aging of our population, that number will have doubled to one in four. There's no cure, and no certain evidence that the current medications -- Aricept, Exelon, Razadyne and Namenda -- which are said to slow the course of the disease, really work. Recent studies pitting Aricept, in combination with vitamin E, against a placebo have had disappointing results.
The costs, financial and emotional, of treating and caring for an Alzheimer's patient are astronomical. Today, the amount of time lost to American businesses by workers being forced to become caregivers of those with Alzheimer's is estimated at 8.4 billion hours a year. The monetary value of this unpaid labor -- often taking place in the caregiver's home -- varies by state, from the lowest, Alaska, at a little above $100,000 a year, to the highest, California, at about $10 billion.
Part of the reason it's difficult for states, and individuals, to estimate the medical costs of caring for someone with Alzheimer's is that the disease doesn't have a clear, predictable trajectory. Unlike, say, cancer, whose stages roughly correlate to a patient's estimated years of survival, Alzheimer's disease varies by patient. The average course of Alzheimer's disease is eight years, but some can have it for 20 years. Those with the early onset form of the disease -- people in their 30s, 40s, and 50s -- tend to decline rapidly, becoming ravaged in a few years. Others, who are older, may already be suffering from ailments like diabetes and heart disease when they receive the diagnosis of Alzheimer's. In these cases, Alzheimer's slowly drones on in the background of the other disorders, until its "side effects" -- the polite term for brain damage -- become so pronounced that the disease takes center stage. Because Alzheimer's takes such a varied and prolonged path, and is often a co-occurring condition, it's hard to parse medical statistics to isolate the costs of Alzheimer's alone. In 2000, for example, Medicare paid an average of $4,207 to treat a person with diabetes; if that same person had diabetes and Alzheimer's, however, the cost increased to $10,943.
For most families, the stress of coping with the disease in real time is compounded by the terror of budgeting for the future. Because patients with Alzheimer's can be ill for a long time and can require elaborate care in skilled and nursing home facilities, health insurance companies are loathe to cover individuals with the disease. Translation -- if your mom, like mine, didn't have long-term health insurance before she received her diagnosis, you can forget it. You can get nailed by home owner's insurance, too, if you decide to move your parent into your home before you put theirs on the market. If the company discovers that your parent's house is vacant, they can cancel the policy.
In the seven years I've been attending a free support group, sponsored by the Alzheimer's Association, I've heard about every variation of the disorder and learned about others forms of dementia, too. There's vascular dementia, caused by imperceptible strokes; Lewy Body dementia, the symptoms of which are a hybrid of Parkinson's and Alzheimer's; and Frontotemporal dementia, which destroys logical reasoning long before it attacks memory, leaving its sufferers especially prone to scam artists, the kind who promise they'll marry you as soon as you change your will.
I'll never forget the first time I went to my group, one just for adult children of parents with the disease. Each member introduced herself, gave a brief history of her parent's illness and asked for practical advice: Anyone heard of a good tranquilizer for agitation? A way to take the car keys away from mom without risking a riot? A kind of food to give a parent who can no longer swallow? By the end of the meeting I felt like Odysseus, granted the privilege and horror of visiting Hades and being allowed to come back. Afterwards, I went directly to a bar to meet friends. I found I had no words to explain where I'd been.
There's little incentive for anyone not directly touched by the disease to want to think about it. Movies like Iris and Away from Her have tried to raise awareness of Alzheimer's among members of the general public, but the films tend to sentimentalize dementia by wrapping it in the soft folds of late-life love. The first scene in Meet the Savages comes closer. But Alzheimer's is more like the movie Groundhog Day. As the patient's short-term memory becomes obliterated, he says the same thing, over and over. But you're in the movie, too. You think there was a yesterday, but you're not so sure anymore. I've watched people in my support group wrestle with an existential conundrum: What's worse, to tell your mother that she has Alzheimer's, knowing that you will have to do it, again and again, causing her tremendous grief and surprise, or to lie to her face, when she asks you what's wrong?
People often say to me, in the moment of thought-defying panic that occurs when they find out my mother has the disease, "Well, at least she doesn't know she's suffering." But that's not how Alzheimer's works. Even though my mother can't tell me what day it is and doesn't remember that our house has three floors and she's on the second one, she knows that something's wrong. She knows that she can't find our house by herself and consequently, she's terrified of being left alone. I spend most of my time, now, when I visit, reassuring her that my father is still alive, he's just downstairs and hasn't abandoned her.
At the same time, there's some essential truth to what these people are saying. I can tell my mother that I'm terribly sad about my life, cry, hold her hand, and know that in five or ten minutes she won't remember I'm upset. My grief -- and I imagine the grief of one's own child stings like no other -- can no longer become hers. Those who love a person with Alzheimer's are caught in a state of perpetual hesitation: How can we grieve, when the person is sitting there before us, calmly drinking a cup of tea? Social workers have a theory for this condition; they call it "ambiguous loss."
Pauline Boss, one of the first scholars to investigate the concept, talks about the particular difficulty that families and caregivers face when a person is either psychologically absent but physically present, such as with addiction or Alzheimer's, or the reverse condition, such as when a wife learns that her husband is missing in action. "Spouses of dementia patients or brain injury survivors are often told by well-meaning professionals or friends that they are lucky because a mate is still alive and with them," she writes. "This does not help, because they feel they no longer know the person. Labeling their loss ambiguous allows them to recognize the real source of their distress and begin the process of coping and grieving that will permit them to move on with their lives."
Right now, those of us struggling with Alzheimer's are a tight community -- I hear, often, from others that they don't even try to talk about their situation with those who haven't experienced it. You have to be there, they say. But if I could paint an accurate picture of what America is going to look like when 25 percent of our elderly population has this disease, I would. I have some hunches. Even now, I have a kind of radar for dementia; I can spot it in a person even before they open their mouth. People with dementia have a kind of gingerly attitude toward the world -- they walk carefully, as if they fear they'll fall; they're watchful, as if anticipating a threat; and they betray themselves with small errors -- their pants are a little too high on their ankles, or their blouse isn't quite right for the season.
"It's crucial that families get a professional diagnosis of Alzheimer's disease as soon as they suspect their loved one may be suffering from dementia," urges Jane Tilly, the Alzheimer's Association's director of quality care advocacy. "The sooner a person receives a diagnosis, the more time he has to make important decisions about the rest of his life, when he is still able to do so. Whom will he choose to serve as his proxy when he can no longer make decisions about the kind of medical care he requires? Who will take care of his finances? And as the disease progresses, will he choose palliative care or heroic measures to preserve his life?"
Alzheimer's demands gentleness from others. The disorder, most of the time, is terribly boring and frustrating, for patient and caregiver alike. It's slow, and cruel, and inexorable. In short, it's antithetical to our cultural values -- it's anti-productive, it's nonrational, and it doesn't have a happy ending. It scares me to think that we are going to continue to ignore this disease, and the threat it poses to our culture, because it isn't pretty, and we don't know what to do. When I think about where we are now, in terms of our understanding of the disease, and our limited caretaking infrastructure, and about the coming tsunami of Alzheimer's patients, I think about Bill McKibbon, writing The End of Nature, his clarion call to halt global warming, 19 years before this year's photograph on the front page of the New York Times of that lone polar bear, on the tiniest of icebergs, drifting in the midst of a melted sea.
Right now, a number of prestigious medical institutes are investigating the "Amyloid Hypothesis," a theory that damage to the brain's nerve cells in Alzheimer's is, in part, an effect of a malfunction in the processing of a protein fragment called beta-amyloid. Dr. Constantine Lyketsos, chairman of Johns Hopkins Bayview Medical Center's Department of Psychiatry, and his team of researchers are working to understand the pathology of Alzheimer's disease by tracing the location and aggregation of beta-amyloid plaques in the brain. "By using magnetic resonance imaging (MRI) to scan the brain of a person who has been injected with a temporarily radioactive stain," he explains, "we can create a map of the disease and, in time, begin to trace the various ways in which the diseases progresses in different patients' brains."
Lyketsos hopes that in the near future medical institutes will create an infrastructure similar to that of contemporary cancer research, with research labs and treatment centers in the same building, allowing for greater cross-pollination between research scientists and clinicians. "We want Congress to recognize the necessity of increasing our research funding now, before the wave of new patients is upon us," Lyketsos says, "but we just haven't reached the tipping point yet."
When I go and visit my mother, now, there's not very much that we can do. Large crowds increase her disorientation and heighten her anxiety. She can no longer read or follow the narrative of a movie. But the disease has also softened her. My mother was intensely bright -- this made her sharp, both in wit and in judgment. Now, she and I have slowed down. We take pleasure in the color of a flower's petal or the way the light hits the branches of the trees outside the window on the second floor of the house. She can't say much, but now that she has been sanded away by Alzheimer's, she asks me the only question that is really important: Are you happy? She tells me I'm a marvelous person and that people are lucky to know me. I squeeze her hand and tell her that it's she who made me.
For information about the disease, to receive medical referrals and to find a support group, call the Alzheimer's Association help line at 1-800-272-3900, or on the Web at www.alz.org. To advocate for greater research funding for Alzheimer's disease, write to your congressional representative, or to members of the House Budget Committee, which allocates funding for the disease.