Devastating for victims and families, Alzheimer's is now being recognized as the disease of the century. The part where the memory is gone, it's dead. The thoughts come to a void, and then there's nothing. Of all the incurable diseases, the degenerative brain disorder known as Alzheimer's may be the cruelest, because it kills its victims twice. In Alzheimer's, the mind dies first: names, dates, places-the interior scrapbook of an entire life-fade into mists of nonrecognition. The simplest tasks-tying a shoelace, cutting meat with a knife, telling time-become insurmountable. Then, the body dies. No longer able to walk or control elemental functions, the victim lies curled in a fetal position, gradually sinking into coma and death. On average, the decline occurs in six to eight years, although some sufferers linger as long as 20 .Experts now call Alzheimer's, the disease of the century. The causes are unknown. And while medical scientists are beginning to make strides in analyzing the chemical processes of the brain, Alzheimer's remains irreversible. It strikes people of every ethnic and socioeconomic group, and the number of cases is expanding apace with the rapid growth of the nation's elderly population. It claims more than 120,000 lives a year, making it the fourth leading cause of death among the old, after heart disease, cancer and stroke.
ANGUISH
Alzheimer's may be even more devastating for the families of victims. They drive themselves to physical and emotional exhaustion while rendering continuous care, and experience the anguish of seeing a loved one turn into a witless stranger who no longer even remembers who they are. And amid all this, they may see their life savings consumed in the crushing task of caring for a doomed patient. It's only going to get worse. Yet Alzheimer's is a disease that health policy makers somehow overlooked in their grand planning. Neither Medicare nor most private health-insurance programs pay for the custodial care its victims need. Before qualifying for federal-state Medicaid, a family must spend its way into virtual poverty Occasionally, spouses become divorced in order to protect what is left of their savings.The in middle class is absolutely wiped out. And even those who can afford to pay $50,000 or more a year for a nursing home are often turned away because Alzheimer's patients are too much trouble. Finally, they threw her out. Until recently, Alzheimer's was considered an exotic disorder. Within the last decade, refined investigative techniques have provided new clues about what causes memory and judgment to break down in the brains of victims. These discoveries raise the possibility, for the first time, that specific treatments can be found.
TWISTED NERVE FIBERS
The typical senile dementia of the elderly used to be blamed largely on impaired blood circulation to the brain and was thought to be an inevitable part of growing old. In 1906, Alois Alzheimer, a German neurologist, encountered a woman who showed all the signs of severe dementia-memory loss, disorientation and hallucinations-even though she was only 51. After her death, Alzheimer examined her brain and discovered that parts of it contained clumps of twisted nerve-cell fibers that he called neurofibrillary tangles. For decades afterward, physicians regarded cases of the kind Alzheimer described as rather rare and confined to the relatively young. In fact, they called the syndrome, presenile dementia. But in the 1960s, researchers armed with electron microscopes discovered the same neurofibrillary tangles in brain tissue from elderly patients with dementia. It soon became clear that the disease is neither presenile nor rare. Alzheimer's accounts for more than half of all cases of senile dementia. The other cases are most often caused by a succession of small strokes that knock out increasingly large amounts of brain tissue, or by a variety of conditions, some of them treatable, that produce mental confusion. These include depression, thyroid disease, deficiencies in certain vitamins, adverse drug reactions, anemia and alcoholism..
MEMORY LOSS
Alzheimer's usually occurs after 65, although it can strike in the 40s. But according to study, even elderly people who have trouble remembering where they put their glasses or can't recall names as quickly as they once did may just be showing normal age-related forgetfulness. They need to be reassured that these subjective symptoms are benign and consistent with good health. Signs of real trouble come when memory loss begins to affect a person's work or social life-a teacher can't remember the names of his students at the end of the semester, or a doctor forgets appointments. Typically, patients in this phase deny their problem or try to belittle it. Although fading memory is the most common early sign, trouble with language or personality changes may be among the first symptoms. Some patients believe the trouble is with their eyes because they aren't able to follow words on a page. Or they may go for a glass of milk and end up in the bedroom instead of the kitchen. Another dominant symptom may be apraxia, difficulty in performing rote gestures such as hair combing. The victim has trouble making appropriate judgments. As the disease worsens, the patient may, confuse the hot and cold handles in the shower and burn himself. Finally, the sufferer becomes incontinent, forgetting where to relieve himself By this time, the patient may not know where he lives, or the season of the year, and may even have forgotten the name of his spouse.
FULL TIME CARE
Some victims may become agitated and even sociopathic. A man was nearly picked up as a sex offender because he pulled down his pants and urinated on the sidewalk in front of some children. Another patient, a woman, was prosecuted for shoplifting by a grocery chain, though her son, her doctor and the police explained that she didn't even know she was in a store. A retired Air Force officer recalls that his wife suddenly began pummeling him while they were driving along a highway at 55 miles an hour. I'm driving with one hand and holding her back with the other. A man in a van next to us almost crashed. I'm sure he thought I was beating her. At this point, the patient obviously needs full-time care. In the last stage of Alzheimer's, the victim loses the ability to speak much at all, just saying yes or OK to everything. Gradually, he becomes unable to walk and may develop contractures of the face, arms and legs. Often, death is the result of pneumonia, which may be caused by inhaling food into the lungs.
DIAGNOSIS
The only sure way to diagnose Alzheimer's is to take a biopsy of brain tissue, which might disclose the telltale neurofibrillary tangles. But most doctors rely on less drastic tests. Often, these eliminate other possible causes of a patient's symptoms, rather than simply show the presence of Alzheimer's. Blood tests may indicate anemia, thyroid abnormalities or vitamin B-12 deficiencies that could be the source of trouble. CAT scans and the more recently developed nuclear-magnetic-resonance (NMR) technique for looking inside the skull will reveal signs of strokes or brain tumors. As part of the workup, patients are given tests of memory, attention span, language, spatial ability and abstract reasoning. In one such exam, they are asked to name the year, season, day of the week and month and to count backward from 100 by sevens. A considerable number of Alzheimer's victims display a trait called intrusion in replying to the questions. They may, for example, give the number of the year when they were asked the day of the week. Patients may also be asked to follow a three-point instruction such as Take a paper in your right band, fold it in half and put it on the floor. Taken together, such tests not only can suggest a diagnosis, but also indicate remaining abilities that can be used effectively in care. Although the disease is irreversible, Alzheimer's patients are by no means beyond help. In the early stages, when depression is often a major symptom, treatment with conventional antidepressant drugs can not only help but even postpone the need for institutionalization. Behavior therapy can also slow down the inexorable process of mental deterioration. Memory crutches in the early phase might include keeping a simple list of routine chores.
SELF-HELP
But the pressure of 24-hour care eventually becomes too great for most people, however loving, to withstand. Besides helping victims with mundane tasks like going to the bathroom, staff volunteers take patients on walks, conduct current events classes and show old movies. Study shows that music is familiar to them emotionally even if their memory is gone. Even if they can't remember the words, they can tap their feet or whistle. One of Care Program, one puts volunteers in the homes of Alzheimer's patients to give their families much-needed periods of rest. Program volunteers undergo an unusual training course. They are asked to perform such tasks as threading a needle while wearing vision-distorting glasses, or shuffling cards while wearing gloves, to illustrate the physical burdens of both the patients and the elderly spouses who must care for them. But in the end, most patients need the full-time attention of a nursing home. They deals with many patients in advanced senility. The home stresses patterning, an individually tailored program in which the patient bathes, dresses and eats according to the schedule he followed at home. Alzheimer's patients are much more comfortable in a structured setting.
Equally important, patients are kept out of bed and engaged in activity as much as possible. They attend group sessions in which they are reminded of familiar objects, like autumn leaves, and listen to music. If we can keep them physically well and active, we can bring them further along and stave off the the last stage of vegetation, says Ryan. Although the cause of Alzheimer's remains elusive, researchers are turning up clues at an accelerating pace. In 1976, scientists at three labs in
And recently other researchers found that the brains of Alzheimer's victims exhibit a dramatic loss of neurons in the basal nucleus, a small area deep within the brain, where, as it happens, most acetylcholine is normally produced. In recent years, researchers have found other clues to the pathology of Alzheimer's. Among the most promising: They discovered some years ago that the neurofibrillary tangles originally described by Alzheimer consist mostly of minute threads twisted into the shape of a double helix, and he called them paired helical filaments (PHF), Outside the nerve cells, Alzheimer's brains show a formation called plaques, knobby patches of dying nerve fibers that are clustered around a core of material called amyloid. Whether the accumulating tangles and plaques are the cause or the result of the disease process is one of the tantalizing mysteries of Alzheimer's. Researchers are trying to determine the molecular composition of these abnormal structures to see what led to their development. They have found that the PHF, for example, are made of cementlike proteins that can't be broken down by ordinary techniques in the lab, which may explain why the disease is irreversible.
HIPPOCAMPUS BLOCKAGE
One of the key areas of the brain for processing new information and putting it into the human memory bank is the hippocampus, below the cerebral cortex. Researchers reported highly specific areas of damage adjacent to this region in five Alzheimer's patients. If the input and output to the hippocampus are blocked, your brain will simply not be able to acquire new memories. We think this is a superb way to explain some types of memory loss patients get in the early stages.
REDUCED RNA
In the normal brain, protein is being synthesized continuously, and a key chemical in the making of protein is RNA. But the study has discovered that the regions of the brain in Alzheimer's patients where the plaques and tangles seem to be particularly numerous show a marked reduction in RNA and protein synthesis. After RNA has done its job of making protein, it is removed by an enzyme. Recently, Reseachers found evidence of excessive activity of this enzyme in Alzheimer's brains, which may account for decreased protein synthesis.
GENETICS
Inheritance clearly plays a role in about 10 to 15 percent of Alzheimer's cases: the children of these victims have a 50 percent risk of developing the disease. Symptoms usually develop earlier than age 65 in these cases and the progress of the disease is unusually rapid and severe. Even among the rest of Alzheimer's victims, as many as a third have had a close relative with the disease. According to study, the younger the relative is when he gets the disease, the greater the risk for others in the family. But if a parent got Alzheimer's after age 70, there's very little increased risk. Another indication of genetic involvement lies in the fact that virtually anyone with Down's syndrome-a form of mental retardation caused by an extra chromosome in the body's cells-develops what seems to be Alzheimer's after the age of 35 or 40. Study has found that families with an Alzbeimer's victim are three times more likely than others to also have a member with Down's syndrome. Since an extra chromosome is the culprit in Down's, that's where scientists, using the new recombinant DNA technology, are looking for the gene that may cause Alzheimer's.
SLOW VIRUSES
Several neurological diseases that produce dementialike symptoms are known to be caused by slow viruses, organisms that lie dormant for long periods before causing any symptoms. So far, however, attempts to transmit such a putative virus to experimental animals by inoculating them with brain tissue from Alzheimer's victims have been unsuccessful, leaving the issue unresolved. Researchers concede that taken together the Alzheimer's evidence to date resembles a jigsaw puzzle. In fact, the disease might have not one, but several interlocking causes-viruses, toxins or genes. Still, using the clues available, doctors are taking the first hopeful steps in testing treatments for the disease. The discovery that patients have a deficiency of acetylcholine prompted researchers to try drugs that would raise levels of the neurotransmitter. The most effective of these has been a drug called physostigmine. It increases levels of acetylcholine by blocking the action of an enzyme that normally removes it from the brain. Resechers of medicine reports clinically significant improvement in 3 of 11 patients taking oral doses of physostigmine. The best were made to look like they had looked 1 1/2 years earlier. Drugs that raise acetylcholine levels may not work in patients with advanced Alzheimer's, researchers suspect, simply because they don't have enough acetylcholine-producing brain cells left. So far, the most promising results have been obtained by the study that reasoned, not enough of a drug gets into a patient's brain when it is given orally. So it suggests to implant a small pump under the skin of the abdomen in four Alzheimer's victims. By means of a catheter inserted through a tiny hole in the skull, the pump delivered a continual flow of an acetylcholinelike drug called bethanechol directly into the ventricles of the brain. As judged by their own families, the patients have shown improvement in such previously impaired activities as reading, personal hygiene, conversation and social activity for as long as a year. Reseachers hope to test the infusion pump on more patients, and using a variety of other more promising drugs.
EXCITING TIME
Scientists compare the current status of Alzheimer's to the challenge they faced with heart disease three decades ago. It, too, was once thought to be an inevitable part of aging. Then came drugs to control high blood pressure and recognition of the role of diet in atherosclerosis, both of which may help account for the present decline in coronary mortality. So, researchers hope, it might eventually go with Alzheimer's. These are exciting times. More is known than ever, and more will be known next year. In the meantime, what seems needed is to keep the Alzheimer's tragedy in the public eye and make sure there is no slackening of the research effort. The way I deal with my grief is by sharing it, talking to people about Alzheimer's, trying to get funding for research. and makes public appearances to tell her mother's story There's an enormous need to come out of the closet, she says, and to share the information, the awareness and the pain.
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