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Living Till We Lose Our Minds

By Walter Donway

August 5, 2014

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At 65, my friend was a beautiful bride, marrying for the second time. Why not? She was slender and fit, had four kids settled into life, and was ready for an adventure.

By 72, she could not cook dinner; she would forget she turned on the oven. When we ordered Chinese take-out, she asked 10 minutes later when we would make dinner. By 75, she has round-the-clock care to take her to the bathroom, feed her, and get her out in her wheelchair. The “groom,” now 84, still works, manages the household, and spends untold hours caring for his wife.

Alzheimer’s is always fatal. It attacks the metabolism of brain cells, cuts communication with other cells, progressively kills the cells, and so extinguishes the mind, personality, and every bodily control system. Ravaged by the disease, the brain on autopsy is shrunken.

Alzheimer’s disease is not the only dementia, but the most common by far, afflicting 5 million Americans. It costs Medicare about $150 billion a year (on average, three times as much as for a patient without dementia). And 15 million Americans, like my friend’s husband, spend billions of hours caring for loved ones as they become confused, then demented, lose all bodily functions, and die.

Alzheimer’s is always fatal. It attacks the metabolism of brain cells, cuts communication with other cells, progressively kills the cells, and so extinguishes the mind, personality, and every bodily control system. Ravaged by the disease, the brain on autopsy is shrunken.

Where did this nightmare come from? First identified in 1901 by the German physician, Alois Alzheimer, it remained obscure until the 1970’s. By then, publichealth measures, better diets, vaccines, and treatments for infectious diseases had done their work: Americans were living far longer. Unfortunately, the incidence of Alzheimer’s doubles every decade after 65. Those who reach their nineties have a 40 percent chance of developing it during that decade. In America today, of course, those over 85 are our most rapidly growing population.

By the mid-1980’s, scientists were working hard on Alzheimer’s, but they started with little. Alzheimer’s had been dismissed as “hardening of the arteries,” “senility”—an effect of old age, old people getting weird. Amazingly, many Americans still think so.

In fact, Alzheimer’s is a disease. It develops and ineluctably progresses in ways now understood, creating in the brain sludgy amyloid “plaques” and twisted neurofibrillary “tangles.” Much is now known, such as the nature of the proteins in plaques and tangles, some genes involved, and many “risk factors,” but still unknown is why Alzheimer’s appears in some people while others—the “super successful agers”—live to 95 still mentally sharp.

Alzheimer’s, like cancer, heart disease, and stroke increases in frequency as we age, is chronic (those diagnosed may live as long as 10 years), with many genes involved, and possibly affected by factors such as exercise, life-time mental activity, and co-existence of diabetes.

But research on cancer, heart disease, and stroke have been underway for a century or more. (The American Cancer Society began in 1913, the precursor to the American Heart Association in 1915.) Today, some cancers can be treated, some cured, most slowed in their progression. There are treatments for heart disease including drugs, bypass surgery, pacemakers, and heart transplants. There are reasonably good approaches to preventing stroke.

For Alzheimer’s, there is no treatment, no cure, no prevention

For Alzheimer’s, there is no treatment, no cure, no prevention. Three decades of research have yielded deep basic understanding, but only drugs that temporarily alleviate some early symptoms. If you are diagnosed with Alzheimer’s, and ask, “What can be done for me?” the answer in bluntest terms is “nothing.”

As our population has aged, the statistics on Alzheimer’s have become grim. The U.S. Census Bureau projects that our over-65 population will double in two decades. By mid-century, if Alzheimer’s cannot be reined-in, an estimated 16 million Americans will have it. The costs of care, in today’s dollars, could be $1.2 trillion a year.

This realization has motivated organizations such as the Alzheimer’s Association, founded only in 1982 and now the largest nonprofit in the field, to drive forward its own research programs but also advocate loudly and insistently for increased funding by the National Institutes of Health (NIH).

This year, the Alzheimer’s scenario went from grim to shocking. The Centers for Disease Control (CDC), relying on death certificates, had been reporting that Alzheimer’s caused 84,000 deaths a year, making it sixth among “killer diseases.” Many found this baffling. If, in any given year, 5 million Americans have Alzheimer’s disease, and it is inevitably fatal, how can annual deaths be “only” 84,000 a year?

Epidemiologists at Chicago’s Rush Medical Center took a closer look, examining 2,600 medical records of deceased Alzheimer’s patients. Often, they found, the “cause of death” was listed as “urinary tract infection,” “organ failure,” or some other final blow to the fatally compromised Alzheimer’s patient. Yet, these “causes” went on the death certificates counted by CDC.

Recalculating to include Alzheimer’s patients who succumbed in their final months or weeks to such causes, the researchers announced on March 5 that deaths from Alzheimer’s might be six times as high as reported—more than 500,000 a year. The 1997 Nobel laureate Stanley Prusiner commented that this would make Alzheimer’s a “cancer-sized problem.”

But with a difference. After decades and billions spent on research, deaths from heart disease, stroke, HIV, breast cancer, and prostate cancer—our other top “killer diseases”—are decreasing. Between 2000 and 2010, deaths from HIV are down 42 percent, deaths from stroke are down 23 percent. In fact, of the six killers, only Alzheimer’s deaths are up—68 percent (by CDC’s “official” count).

Not surprising, since Alzheimer’s lacks any treatment and the research battle is comparatively new. Although HIV research also began in the 1980’s, spending has been massive. Today, for every death caused by HIV, the NIH spends $3,000 on research. The comparable figure for Alzheimer’s disease is $130.

No one is urging NIH to reduce spending on HIV or any major cause of death. The need is to support Alzheimer’s research at a level commensurate with deaths, years lost, cost of care, and disruption to the lives. Unfortunately, the NIH budget, like those of other government programs, is under intense pressure as national debt soars and Congress engages in non-stop battles over spending.
The Alzheimer’s Association and other advocates in and out of government have made the case—at times, successfully–for increases in research spending. But, at about $500 million a year, NIH spending on Alzheimer’s falls far short of the billions spent on HIV, cancer, heart disease, and stroke. This makes a compelling case for private support of Alzheimer’s research, now at a total of $100 million a year or less.

Compelling and urgent. If conclusions of the Rush study are confirmed, as most Alzheimer’s scientists believe they will be, Alzheimer’s could take center stage as the public health crisis of our day—a time-bomb wired to our rapidly aging population.

In human terms, the prospect of longer life won by years of investment in medicine, public health, and education about lifestyles could become, for too many of us, a dread of living long enough to lose our minds.

 

 

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