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ALZHEIMER'S DISEASE

More than Simple Forgetfulness

Do you ever leave the house and wonder if you remembered to turn off the iron or the water? All people experience this occasional absentmindedness, but for some it is the beginning of the loss of their minds—and a long, wasting death. In November 1989 researchers at Boston's Brigham and Women's Hospital found that more than 10 percent of people sixty-five years old and older, and nearly half of those older than eighty-five, suffered from "probable" Alzheimer's disease. This new information almost doubled previous estimates, raising the number to as many as 4 million victims nationwide. With predictions of 14 million victims by the year 2050, Alzheimer's was becoming "one of the biggest public health dilemmas we've ever encountered," according to the National Institute on Aging's deputy director, Gene Cohen. Before 1980 many Americans had never heard of Alzheimer's disease, described by some as "a living death," or "the long goodbye." Although many families watched their loved ones succumb to the disease, it did not become generally familiar to the public until the news broke that film star Rita Hayworth suffered from Alzheimer's disease.

The Long Good-Bye

Senility was long seen as an inevitable consequence of getting old. But it is not an inescapable aspect of old age; there are many reversible dementias that can be successfully treated. But Alzheimer's, a neurological condition that impairs the brain's functioning, is an irreversible disease. It is diagnosed through a process of elimination of other disorders. Neurofibrillary tangles and senile plaques in the brain characteristic of Alzheimer's disease could only prove the disease in autopsies of victims. It was the fourth leading killer of adults, causing more than one hundred thousand deaths a year. Researchers did not know the cause of the disease, although genetics was thought to play a role. Other theories suggested a slow virus, a disorder in the immune system, or excessive amounts of aluminum in the brain. First recognized in 1906 by the German neurologist Alois Alzheimer, it was marked by early forgetfulness. Within three to ten years the disease progressed through severe losses of intellectual functioning, and painful personality and physical changes. Patients were unable to speak, think, or care for themselves. Death usually occurred within ten years after diagnosis. "The emotional impact of watching a parent or spouse deteriorate is devastating," said Johns Hopkins psychiatrist Peter Rabins.

Victims and Their Families

Families bore most of the burden of care, with about 70 percent of Alzheimer's victims remaining at home. In the earlier stages of the disease, some victims were prone to wander or have out-bursts of violence and anger; in the later stages they became incontinent and could not dress or feed themselves. The twenty-four-hour needs of the Alzheimer's sufferer often severely taxed the physical and psychological stamina of caregivers and caused breakdowns in their own immune systems. Health concerns for the caregiver could begin to rival those of the patient. Alzheimer's also came to be known as "the survivor's disease." Nursing-home costs of caring for Alzheimer's sufferers ranged from $22,000 to $30,000 a year and were not covered by Medicare or by many private health insurance companies. For families to become eligible for Medicaid funds, they had to run through their savings. Community resources were important since social support was an important way for caregivers to provide for the increasing needs of their loved ones and themselves. Day-care centers for the elderly were few in 1989, and most only took Alzheimer's victims in the early stages. For "difficult" patients who needed constant watching or restraints, there was almost nothing. Neither nursing homes nor day-care centers would take these patients.

Elusive Treatments

Finding treatments were even more elusive than finding the cause. No "wonder drug" existed for the disease, nor even a clear and consistent treatment approach. Researchers found that some drugs helped some of the people some of the time, but there were puzzling inconsistencies in response from one patient to the next. Sadly, even once diagnosed, a person inevitably got worse, and as knowledge of the puzzling disease spread, sufferers had a frantic awareness in the early stages—they had it and could not do anything about it. By 1989 much was known about the symptoms of the disease, but little was known of the causes. Ongoing research attempted to unlock the secrets of the disease, but neither a full scientific understanding nor a cure existed. Before the 1980s Alzheimer's was thought to be a rare disease and few Americans had heard of it. Alzheimer's disease received considerable public attention during the 1980s. The media emphasized the impact the illness had on both its victims and their families. Most communities did not have services or care facilities developed specifically for the long-term needs of Alzheimer's patients, nor did they provide support services for the caregivers. But many communities did have agencies that provided for the various needs of the elderly, and by decade's end many of these agencies often provided support and service to both patients and care-givers. The next decade and the increased aging of America would see an increase in care facilities and other social supports for both Alzheimer's victims and their families.