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Facts on Dementia Due to HIV Infection
Decline in mental processes is a common complication of HIV infection (and many other conditions).
- Although the specific symptoms vary from person to person, they may be part of a single disorder known as AIDS dementia complex, or ADC. Other names for ADC are HIV-associated dementia and HIV/AIDS encephalopathy.
- Common symptoms include decline in thinking, or “cognitive,” functions such as memory, reasoning, judgment, concentration, and problem solving.
- Other common symptoms are changes in personality and behavior, speech problems, and motor (movement) problems, such as clumsiness and poor balance.
- When these symptoms are severe enough to interfere with everyday activity, a diagnosis of dementia may be warranted.
AIDS dementia complex typically occurs as CD4+ count falls to less than 200 cells/microliter. It may be the first sign of AIDS. With the advent of highly active antiretroviral therapy (HAART), the frequency of ADC has declined from 30-60% of people infected with HIV to less than 20%. HAART may not only prevent or delay the onset of AIDS dementia complex in people with HIV infection, it can also improve mental function in people who already have ADC.
What Causes Dementia Due to HIV Infection?
AIDS dementia complex is caused by the HIV virus itself, not by the opportunistic infections that occur commonly in the course of the disease. We do not know exactly how the virus damages brain cells.
HIV may affect the brain through several mechanisms. Viral proteins may damage nerve cells directly or by infecting inflammatory cells in the brain and spinal cord. HIV may then induce these cells to damage and disable nerve cells.
What Are the Symptoms of Dementia Due to HIV Infection?
AIDS dementia complex affects behavior, memory, thinking, and movement. At first, symptoms are subtle and may be overlooked, but they gradually become troublesome. The symptoms vary widely from person to person.
Symptoms of early dementia include the following:
- Reduced productivity at work
- Poor concentration
- Mental slowness
- Difficulty learning new things
- Changes in behavior
- Decreased libido
- Word-finding difficulty
- Apathy (indifference)
- Withdrawal from hobbies or social activities
Symptoms of worsening dementia include the following:
- Speech problems
- Balance problems
- Muscle weakness
- Vision problems
- Loss of bladder control (and occasionally bowel control)
Other, rarer symptoms include the following:
- Sleep disturbances
- Psychosis - Severe mental and behavioral disorder, with features such as extreme agitation, loss of contact with reality, inability to respond appropriately to the environment, hallucinations, delusions
- Mania - Extreme restlessness, hyperactivity, very rapid speech, poor judgment
Without HAART, these symptoms gradually worsen. They can lead to a vegetative state, in which the person has minimal awareness of his or her surroundings and is incapable of interacting.
Exams and Tests to Diagnose AIDS Dementia Complex
In a person known to have HIV infection, the appearance of cognitive, behavioral, or motor symptoms suggests that the person has AIDS dementia complex. It is important to consider, however, other possible causes of these symptoms, such as metabolic disorders, infections, degenerative brain diseases, stroke, tumor, and many others. Your health care provider will carry out an evaluation to determine the cause of your symptoms. This will include a medical interview, physical and mental status examinations, CT and/or MRI scans, neuropsychological testing, and, possibly, a spinal tap.
CT scan and MRI can detect changes in the brain that support the diagnosis of AIDS dementia complex. Brain changes in ADC worsen over time, so these studies may be repeated periodically. Importantly, these scans help rule out other treatable conditions such as infection, stroke, and brain tumor.
- CT scan or MRI of the head: These scans give a detailed, 3-dimensional picture of the brain. They can show brain atrophy (shrinkage) that is consistent with ADC as well as changes in the appearance of different parts of the brain.
- Position emission tomography (PET) or single-photon emission computed tomography (SPECT) scan: These scans may reveal abnormalities in metabolism in the brain that are consistent with ADC or other conditions. These scans are not yet widely used and are available only at large medical centers.
No lab test confirms the diagnosis of AIDS dementia complex. If you have lab tests, they serve to rule out conditions that might cause similar symptoms. You may have blood drawn for multiple tests. Your health care provider may test your cerebrospinal fluid (CSF). This clear fluid is made in normal cavities in the brain called ventricles (which are seen on CT scan and MRI). The fluid surrounds the brain and spinal cord. It cushions and protects these structures and may distribute beneficial and harmful substances. CSF can be tested for various abnormalities that are related to dementia symptoms. A sample of the CSF is obtained via lumbar puncture (spinal tap). This procedure involves removal of a sample of CSF from the spinal canal in the lower back.
For electroencephalography (EEG), a series of electrodes are attached to the scalp. The electrical activity of the brain is read and recorded. In the later stages of ADC, the electrical activity (which appears as waves) is slower than normal. EEG also is used to see whether a person is having seizures.
Neuropsychological testing is the most accurate method of pinpointing and documenting your cognitive abilities.
- This can help give a more accurate picture of the problems and thus can help in treatment planning. It might be repeated later to monitor changes in symptoms.
- The testing involves answering questions and performing tasks that have been carefully prepared for this purpose. The test is given by a neurologist, psychologist, or other specially trained professional.
- It addresses your appearance, mood, anxiety level, and experience of delusions or hallucinations.
- It assesses cognitive abilities such as memory, attention, orientation to time and place, use of language, and abilities to carry out various tasks and follow instructions.
- Reasoning, abstract thinking, and problem solving also are tested.
What Is the Treatment for Dementia Due to HIV Infection?
Just as there is no cure for AIDS, there is no cure for AIDS dementia complex. However, ADC can be controlled in some people by appropriate treatment.
Self-Care at Home for AIDS Dementia Complex
If you have AIDS dementia complex you should remain physically, mentally, and socially active as long as you are able.
- Stay active. Daily physical exercise helps maximize body and mental functions and maintains a healthy weight. This can be as simple as a daily walk.
- Engage in as much mental activity as you can handle. Keeping your mind working may help keep cognitive problems to a minimum. Puzzles, games, reading, and safe hobbies and crafts are good choices.
- Don’t stop seeing your friends and relatives. Your social life is not only enjoyable but keeps your mind active and your emotions in balance.
A balanced and nutritious diet that includes plenty of fruits and vegetables helps maintain a healthy weight and prevent malnutrition and constipation. You should not smoke, both for health and safety reasons.
What Is the Medical Treatment for Dementia Caused by HIV?
Highly active antiretroviral therapy (HAART), which is effective in controlling HIV infection, also protects many HIV-positive people from developing AIDS dementia complex. In some cases, HAART can partially or completely reduce symptoms of ADC.
No specific treatment is available for cognitive decline in AIDS. Specific symptoms such as depression and behavioral disturbances are sometimes relieved by drug therapy.
- Antidepressant medications may improve symptoms of depression.
- Antipsychotic medications can improve severe agitation or aggression, hallucinations, or delusions.
- These “psychoactive” drugs are not appropriate for everyone.
- Your health care provider may consult a specialist in brain disorders (neurologist or psychiatrist) to determine the best treatment.
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What Is the Follow-up for AIDS Dementia Complex?
If you have AIDS dementia complex, you should have regular and frequent visits with your health care provider. These visits allow repeat testing to monitor your condition, review of symptoms, and adjustments to treatment if needed. The visits also permit the health care provider to assess whether your care is appropriate. Persons with advanced dementia may require inpatient care in a nursing home or similar facility.
How Can You Prevent AIDS Dementia?
Highly active antiretroviral therapy (HAART) can delay or prevent development of AIDS dementia complex in some people with HIV infection, especially if it is given early in the course of the disease. There is no other known way of preventing ADC.
What Is the Prognosis for Dementia Caused by HIV?
Despite the widespread use of HAART, some people with HIV infection continue to develop AIDS dementia complex. Others do not tolerate HAART. For these people, the outlook is often poor. For many, the dementia worsens over a period of months until the person is no longer able to care for himself or herself. He or she becomes bedridden, unable to communicate, and dependent on others for care.
Support Groups and Counseling for AIDS Dementia Complex
AIDS dementia complex can be one of the most difficult of all HIV/AIDS complications for you and those who care for you. The condition affects every aspect of your life, including family relationships, work, financial status, social life, and physical and mental health. You may feel overwhelmed, depressed, frustrated, angry, or resentful.
While understandable, these feelings do not help the situation and usually make it worse. This is why support groups were invented. Support groups are groups of people who have lived through the same difficult experiences and want to help themselves and others by sharing coping strategies.
Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, contact the following organizations. You can also ask your health care provider or behavior therapist, or go on the Internet. If you do not have access to the Internet, go to the public library.
For more information about support groups, contact these agencies:
- Centers for Disease Control and Prevention, National Prevention Information Network - (301) 562-1098 or (800) 458-5231
- Family Caregiver Alliance, National Center on Caregiving - (800) 445-8106
- National Alliance for Caregiving
Pictures of Brains with AIDS Dementia Complex
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"Cognitive impairment in patients with AIDS – prevalence and severity"
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