AIDS DEMENTIA COMPLEX: HIV AND THE CENTRAL NERVOUS SYSTEM

People with HIV infection often worry about dementia. In fact, people are sometimes so worried that every time they forget something or have trouble concentrating, they wonder if they are in the early stages of dementia. Many of these people can be reassured: losing memory and concentration is common and normal when people are also anxious, depressed, or overextended. Nearly everyone has, at one time or another, locked the keys in the car, forgotten an appointment, or been unable to pay attention to a TV show as a result of being stressed or worried. Usually, such lapses are temporary and a sign only of preoccupation.     AIDS dementia complex occurs in 30 to 50 percent of the people with HIV infection, usually in the late stages. The cause of AIDS dementia complex is not understood. Physicians who specialize in AIDS dementia suspect it is caused by HIV invading the brain directly. It is rare before the late stages of HIV infection. After the immune system is profoundly weakened, dementia becomes relatively common.     Dementia causes noticeable changes in a person’s mental abilities, attitude, and muscle control. The changes usually follow a certain pattern. At first, people with HIV infection or their caregivers notice mental slowing: they say they are less “sharp,” or they are “not as quick,” or their thinking is “cloudier.” They take longer to organize their thoughts, to respond to questions. Later, mental slowing progresses, and can be accompanied by apathy and withdrawal. Most people with AIDS dementia complex eventually have problems controlling their muscles. They walk unsteadily, and they trip or fall easily; their legs are often weak. Their coordination is reduced, and they have problems with eating and writing. Eventually, people with AIDS dementia complex may progress rapidly to the point where they are totally withdrawn.     Some people with dementia experience a mild mental slowing that never becomes more serious; for these people, dementia has only a small impact on their lives. For others, dementia progresses rapidly and mental impairment is severe.     Someone with the symptoms of AIDS dementia complex should be examined and tested to exclude the possibility that the symptoms are caused by depression or by an infection of the central nervous system. Diagnosis of dementia will often be made by specialists: neurologists or AIDS physicians. The tests for dementia include a series of tests of mental abilities, a neurological examination, a spinal tap, and a brain scan. The purpose of the tests is to find out what the person can and cannot do mentally, to determine the severity of the dementia, and to exclude other causes—like cryptococcal meningitis, toxoplasmosis, or lymphoma of the brain—that could be causing the same symptoms.     So far, there is little in the way of specific therapy for AIDS dementia complex. AZT, unlike many antibiotics, does get into the brain. Furthermore, some studies have shown that AZT and other drugs will slow or prevent the onset of AIDS dementia complex. And AZT clearly helps some people who take it by slowing the course of the dementia. Antibiotics similar to AZT, which also inhibit the reproduction of HIV, might be similarly helpful in treating dementia, but they are still being studied.     A note of caution: For reasons medical scientists do not yet understand, most drugs that act on the central nervous system, including drugs for sleep, antidepressant drugs, and antianxiety drugs, have a greater than usual effect on people with dementia. These include alcohol and all benzodiazepines: Valium, Librium, Xanax, and Ativan. Physicians must be made aware of the diagnosis of AIDS dementia complex so they can prescribe and monitor drugs carefully.     People with a confirmed diagnosis of AIDS dementia complex need appropriate medical care for this and other aspects of HIV infection, need support in their living arrangements, and need to do some long-term planning. Making some decisions becomes necessary. Some of these decisions include assigning a durable power of attorney, writing wills, and writing living wills and a medical order not to resuscitate. They must also consider when to stop driving a car, especially if they feel their motor abilities or reaction times are impaired, or when they notice people blowing horns, or when they start getting tickets, or when they forget where they are, or because they worry about hurting others. They consider stopping work, especially if they think they are doing sloppy work or can’t work as well or can’t remember what they need to. Quitting work or stopping driving does not automatically mean that they are dependent and useless, or that life can’t be enjoyable.     The rest of this section discusses in more detail the symptoms of AIDS dementia complex and the strategies people have worked out for living with those symptoms.*144\191\2*

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