Of all the afflictions which plague people with AIDS, dementia is among the most feared. Memories of friends and loved ones rendered speechless and blank-eyed, or spouting gibberish, or behaving strangely, haunt us, whether the dementia is caused by AIDS, Alzheimer's disease, or some other neurological disorder.

The bad news is that upon autopsy, 90% of people with AIDS show pathological changes in the brain and 70% have manifested various sorts of neurological symptoms resulting from these changes. Only 30-40% of AIDS patients develop cognitive problems such as forgetfulness and poor concentration.

The good news is that only 7% of those diagnosed with HIV encephalopathy whom I have worked with have developed cognitive and/or behavioral problems so severe that they are no longer able to manage their lives.

What is Dementia?

In general parlance, dementia means "insanity," but in psychological and medical terminology, dementia means any degree of deteriorated mentality and cognition. In scientific descriptions, all the mental changes associated with AIDS were initially lumped into the category "AIDS dementia complex"_ dementia for short. Since dementia has such an extreme and negative connotation for most people, we have attempted to change the term to HIV encephalopathies. But the term dementia is still more common by far. Encephalopathy is a more general term meaning any kind of disease process within the brain.

For most, however, forgetfulness and poor concentration are the only manifestations, and these problems can be alleviated to some extent with organizational tools such as daytimers, list-making blackboards, pillboxes, and careful planning.

Drugs and Dementia

Certain medications can also be helpful. Ritalin, better known as a treatment for hyperactive children, helps with alertness, concentration, and memory. Very low doses of major tranquilizers such as Stelazine and Trilafon, more often associated with the treatment of psychosis, are helpful with agitation and irritability which sometimes result from anxieties about cognition and from neurological deficits as well. Anti-depressants, especially those in the Prozac-Zoloft family, are helpful with the depression that often accompanies encephalopathies, and Depakote, which was initially used to treat seizure disorders, is helpful with the mood swings which some people experience. AZT is sometimes helpful in slowing the course of encephalopathy, or even temporarily reversing it.

On the other hand, some medications make encephalopathic symptoms worse. Benzodiazapines such as Valium, Librium, Xanax, Restoril, and Ativan cause increased forgetfulness and even confusion, as can tricyclic antidepressants such as Elavil (a great loss since it is the most effective treatment for peripheral neuropathy), Pamelor, and Tofranil. Antihistamines such as Benadryl can also increase confusion.

Street drugs and alcohol can also increase dementia symptoms. People who had no problems with marijuana or alcohol may find that they no longer tolerate the amounts they're used to, or perhaps cannot tolerate them at all. People who have used drugs and/or alcohol over long periods of time are somewhat more prone to developing symptoms of encephalopathies, probably because of the changes already started in the brain.

Delirium, a more changeable and often temporary condition, can be caused by HIV encephalopathy, but also by problems in other parts of the body. The nutritional absorption deficit which affects people with AIDS, as well as kidney and liver disease, can bring on delirium which may be reversible with treatment.

OI's and Dementia

There are several opportunistic infections which cause encephalopathecs. PML (progressive multifocal leukoencephalopathy) and lymphoma are the best documented, but CMV is another probable culprit. Opportunistic infection-caused encephalopathies progress much faster than garden variety HIV dementia, but lymphoma and CMV can sometimes be controlled or slowed with medical treatment. PML has no known effective treatment and is probably always fatal.

Encephalopathies are difficult to come to terms with, both for the sufferer and those around them. Most of us depend on, and trust in, our thinking abilities more than any of our other abilities. The loss of mental faculties, in this day and age, signifies loss of independence, usefulness, and even safety. Even the smallest loss of concentration and memory can signify the beginning of decline, the thought of which throws us into panic, either for ourselves or those we see slipping. It takes a great deal of courage to face and come to terms with these changes. I am constantly awed by the perseverance and heart demonstrated by the people I work with. Only a few people give in to it immediately, wanting others to take care of them completely. Most want to stay as independent as possible for as long as possible.

Dealing with Dementia

In dementia, judgment may be impaired to an extent necessitating intervention by caregivers, family, and friends. The caregiver's first impulse may be to take over completely, but that is rarely the best plan for the patient who needs to maintain whatever independent functions he or she is able to perform safely. These assessments are not always clear-cut and decisions are not easy to make for caregivers or patients. Objectivity and patience are required; planning meetings involving all those closely involved with the patient have proved to be very helpful.

Attitudes and emotions vary greatly in those dealing with dementia. Grief reactions involving anger, denial, sadness, bargaining, and acceptance are normal. Depression may be difficult to distinguish from dementia. Suicidal thoughts are common. Black humor is an effective coping mechanism; a patient with PML said to me after his umpteenth CAT scan, "I don't know why they keep doing CAT scans. There's nothing left in there to look at."

Some people take dementia as a change in life to be dealt with as best they can. One of my patients, whose profession before AIDS required a high degree of intelligence, intellectual training, and acuity, said to me recently of living with dementia, "Well, it's a challenge _a different kind of challenge than I used to have in my professional life. But being able to manage my memory and concentration problems, gives me great satisfaction every day. I feel good about my life now."

(Anne Rice is a psychiatric clinical nurse specialist in Denver, who provides counseling for people with HIV/AIDS. This article is reprinted from Resolute!, the newsletter of The People With AIDS Coalition Colorado, August, 1995. For subscription information, write Resolute!, PO. Box 300339, Denver, CO 80203 or call 303.329.9379.)

Copyright (c) 1995 - Noncommercial reproduction encouraged.

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