AIDS Dementia Complex

ASSAULT ON THE BRAIN JODY MAIER IS CLEARLY UNCOMFORTABLE remembering the experience. "It was frightening. It was terrifying. It was terrible headaches, months when I could only stand or lie down. I lost control of one side of my body. I couldn't write. i had lost fine motor control. I also had memory lapses. One time I was in a supermarket and suddenly I couldn't remember how I got there."

Maier has AIDS, the immunodeficiency disease that lays open the body to opportunistic infections that normally cannot survive in humans. In July 1986, a protozoan called toxoplasma gondi invaded Maier's brain. For several months, he wrestled with a neurological monster that doctors and psychologists have only recently recognized. Now their goal is to understand it and find ways of helping its victims.

AIDS is like the Hydra of Greek mythology, the serpent that grew two heads whenever one was cut off. The neuropsychological face of the disease appeared several years ago to friends, families and caregivers who watched AIDS patients slip into stupors or rant incoherently during the months before death. In 1986, Richard Price, a neurologist at Memorial Sloan-Kettering Cancer Center in New York, and his colleagues gave the serpent's ew head a name--AIDS Dementia Complex (ADC). Now Price and a few specialists are discovering that forms of ADC can strike even before the first signs of AIDS surface. Price, who estimates that 90 percent of AIDS victims may suffer some form of dementia, says that it may be the first and sometimes the only sign of AIDS.

ADC is usually caused by the AIDS virus itself, but Maier and other people with AIDS have experienced an almost indistinguishable version caused by an AIDS-related opportunistic infection. Maier gazes out at the sprawling hospital at Johns Hopkins University in Blatimore, where he has related his experience to troops of medical professionals, and tries to sum up what he has learned about ADC. "It would be good to realize that perhaps there's a garden-variety depression over having AIDS and being infected. Then there are neuropsychological problems that are directly attributable to opportunistic infections. And there are also the problems attributed to primary infection with the virus in the central nervous system."

Usualy the AIDS virus does the primary damage. Scientists believe that after invading the body it seeps into the brain and forms a reservois of infection. It may lie dormant for years until something--no one knows what for sure--activates it. Then the virus begins to play havoc with its host, affecting how the person thinks, feels and moves.

Price lists some of the telltale features of AIDS dementia: People who are infected may gradually find it difficult to concentrate or perform complex sequential mental tasks. They may reread paragraphs or pages several times to understand the content. They miss appointments and start to keep lists. Plots of television programs become confusing. Victims begin to feel apathetic, they lose spontaneity and they begin to withdraw socially. The early motor symptoms usually involve the legs and create clumsiness or weakness of gait. Handwriting may also be affected, and the victims may drop things more frequently.

Now that researchers have an inkling of what to look for, they are beginning to spot signs of unusual psychological and neurological behavior in people infected with the AIDS virus who show no other symptoms. But diagnosing ADC is still far from easy. "It is very difficult to separate out what is there due to the psychological effects" of discovering that one is infected from the effect of the organi damage, explains Peter Bridge, deputy AIDS coordinator for the Alcohol, Drug Abuse and Mental Health Administration in Rockville, Maryland.

Most experts on ADC agree with Bridge. Igor Grant, a psychiatrist at the University of California, San Diego, and his colleagues found neuropsychological abnormalities in 44 percent of a small sample of disease-free men who tested positive for AIDS. But he also found similar abnormalities in 9 percent of a group of gay men who did not have AIDS. Other researchers have identified unusually high rates of neuropsychological impairment in men uninfected with the AIDS virus.

Obviously, better markers are needed to avoid false trails, and some recent work shows promise. John Gardi, a neurophysiologist at the University of California, San Francisco, and his colleagues discovered that auditory evoked potentials in the brain stem are markedly slowed in ADC patients. An evoked potential is a measure of the time it takes an auditory signal to travel from the ear to the brain. Gardi says he thinks AIDS causes "patchy" degeneration in the brain. Sometimes, for example, a patient has a normal response from one ear but an abnormal response from the other.

At Memorial Sloan-Kettering, Price is betting on positron emission tomography (PET) scans, which show brain activity by measuring glucose. These scans tend to show a consistent abnormality in ADC patients. Other scientists are examining cerebrospinal fluid for some sign of brain infection.

For now, tests for ADC usually consist of the standard tests for neurological impairment. Subjects are timed as they insert grooved pegs into holes on a board. They listen to a series of numbers and repeat them, first forward, then backward. They momentarily view photographs of faces and later must recall whether the faces are familiar. Or they pencil in lines connecting a random array of 25 consecutively numbered dots, a measure of visual scanning called the Trailmaking Test.

Psychologist Alician Boccellari is director of neuropsychology at San Francisco General Hospital, the first hospital to dedicate a ward for AIDS patients and to create a team of specialists for them. She and psychiatriat James Dilley report that 71 percent of their ADC patients did poorly on the Trailmaking Test. About the same proportion fared even worse when they tried to alternate between consecutive numbers and consecutive letters of the alphabet, a test of mental flexibility. In another test, Boccellari quoted unfamiliar phrases to patients and found that they retained them well for five minutes. "But when you asked them after a 30-minute delay, their memory was horrible," she says.

Depression not related to AIDS also affects trailmaking and memory skills. But even though these depressed patients finish their trails more slowly than normal, they don't often make errors; 68 percent of Boccellari's patients did. And the "normal" depressed patients ordinarily have little trouble retaining phrases for 30 minutes.

Boccellari, who worries that psychologists will dismiss ADC as depression or anxiety because they don't know the signs, holds workshops for professionals on how to diagnose the complex. She and Dilley also have written a brochure for families, friends and caregivers (see "Detecting Dementia," this article).

Once the dementia takes hold, it poses a host of wrenching problems for physicians and psychologists. Among the most acute is the management of severe cases. "Over the past year and a half," boccellari says, "I believe there have been 50 admissions [of AIDS patients] to the locked psychiatric unit." Some of them suffer depression, anxiety and suicidal thoughts that come directly from dealing with their termina illness. But others suffer something more fundamental that Boccellari describes as "organic-manic" illness.

"They present like manic-depressives, but it's due to the virus. They show hyperactivity, grandiose thinking or delusional thinking. they'll be quite psychotic ... they may be very hard to manage on one of the medical units because of their psychoses. They are very agitated, or they wander around the unit." In some cases, their illness is accompanied by anosognosia--not knowing that you don't know. "They don't realize they have any problems," Boccellari says. "They will insist that they still can live independently, that they still should be able to drive a car."

The thought of anosognosia concerns Boccellari. "I don't want to overestimate this, but a certain number of people with AIDS dementia become quite impulsive and their judgment becomes very impaired because of the dementing illness. In a very few cases, they may become sexually promiscuous, because they may not have good judgment ... potentially they may be a danger not only to themselves but to other people."

Because some AIDS patients may suffer only ADC and no other apparent disease, hospitals often release them. Even psychiatric hospitals have been unwilling to take large numbers of ADC cases. In San Francisco, where more than 4,000 people had contracted AIDS by the end of 1987, there are only a handful of beds set aside for ADC patients.

Nursing homes are reluctant to take AIDS patients, arguing that they don't have the training or facilities. "I think this is sometimes an excuse for not getting involved," Boccellari says.

Seton Hill in downtown Baltimore is one of the few nursing homes that does taken AIDS patients. Two years ago Seton Hill set aside five beds for them. "I went into it out of fear," says Lorraine Raffel, president of Seton Hill. It was a businesswoman's fear; Maryland had threatened to fill empty beds at hospitals with long-term care patients if nursing homes did not start taking AID patients.

Raffel thought other nursing homes would follow. "I was naive ... they are just scared, and they are not absorbing what health-care experts are saying." Of 18 patients cared for at Seton Hill, Raffel remembers only one who was difficult to control. In most of the cases, she says, "You treat the family more than you do that patient."

That's understandable, since no special treatment for ADC exists. In fact, one treatment for some of the symptoms may be hazardous. Physicians sometimes prescribe Haldol for agitated or manic patients. The drug often seriously impairs the motor systems of ADC patients.

Scientists at the National Institute of Mental Health (NIMH) also fear that drugs designed to rout the AIDS virus from the immune system may never reach the viral reservoir in the brain. A haunting possibility is that a person could lick the virus bus suffer irreparable brain damage.

As grim as AIDS dementia appears, there is hope. Most people with AIDS can now get AZT, a drug that may reverse the neurological effects of the virus. In the meantime, some have learned how to contain, if not vanquish, the problem. Psychologist Richard Carpenter sees dozens of AIDS and ADC patients weekly in his Baltimore office. "My goal," he explains, "is to help people just keep growing and living as rich a life as possible given the parameters that are imposed on them by the disease." Carpenter comes well-prepared to dispense such advice; diabetes took his sight several years ago. "I help people gain some feeling of control on their journey through something where nobody has much control, including medical people."

Maier, who sees Carpenter regularly, has attained some of that control. He needs it, he says, as the toxoplasmosis continues to play cat and mouse in his brain. Early last year Maier began taking AZT. With the help of this and other medication, he shook off the infection and its dementing effects. Last November, however, the symptoms reappeared. "It was that same change in mood. The depression was really very profound," he says. "But this time I knew what it was." Maier's physician started treating him for toxoplasmosis right away, and he has regained his health and confidence. "I just have utter, utter joy that it's over."

COPYRIGHT 1988 Sussex Publishers, Inc.
COPYRIGHT 2004 Gale Group