AIDS dementia complex (ADC), sometimes called HIV-associated dementia (HAD), is different than other types of AIDS-related illnesses. Most AIDS-related illnesses are caused by other infections (such as bacteria, fungi, and other viruses). ADC is one of the only illnesses that can be caused directly by HIV.
HIV can pass into the brain. In fact, some studies show that HIV enters the brain in as few as two days after the virus first enters the body. HIV can damage nerve cells in the brain, although researchers don’t totally understand how this happens.
ADC can happen at any T-cell count. However, it is much more likely to occur when the T-cell count falls below 200. This is because the immune system plays a major role in protecting nerves in the brain. If the immune system becomes suppressed, HIV and other organisms can damage these nerves and affect the way the brain works.
It has been estimated that between 20 percent and 35 percent of all HIV-positive people will eventually develop some symptoms of ADC. However, the number of HIV-positive people with ADC is much lower today, thanks to the availability of antiretroviral (ARV) medications.
What are the symptoms?
The symptoms of early dementia include:
• Trouble learning new things
• Difficulty remembering things that happened in the past
• Changes in behavior
If dementia progresses, it can cause the following symptoms:
• Speech problems
• Balance problems
• Vision problems
• Problems walking
• Loss of bladder control
• Mania (an exaggerated feeling of well-being) or psychosis (a loss of contact with reality)
It is important to remember that many of these symptoms can have many different causes, not just ADC. Depression, for example, can develop in anyone—not just HIV-positive people with suppressed immune systems. Thus, it is important to discuss any changes in your mood, concentration, or behavior with a health care provider to figure out what might be going on.
How is it diagnosed?
Because there are several AIDS-related diseases that can cause symptoms similar to those of ADC, it is often necessary to conduct different tests to determine the actual causes of the symptoms. Toxoplasmosis, lymphoma, and PML have many of the same symptoms as ADC. The most common tests are:
- A mental status exam: This includes game-like tests to check memory and concentration abilities.
- X-rays, CT scans, and MRI: All of these are painless and provide doctors with images of the brain and spinal column. Different diseases cause different types of damage to the brain and/or spinal column. Examining these images can help doctors determine what is going on.
- A spinal tap: A needle is inserted into the spinal column to drain a small amount of cerebrospinal fluid—the liquid that surrounds the brain and spinal column. A laboratory can examine this fluid to look for organisms that might be causing symptoms, including HIV.
How is it treated?
Just as ARVs are the best tools to keep viral load undetectable and to keep the immune system healthy, they are also the most effective treatments for ADC. However, some ARVs are more effective than others. Not all ARVs are able to cross from the bloodstream into the brain. This is because the brain is protected by the “blood-brain barrier”— a tight mesh of cells that prevent many organisms and chemicals (including medications) from entering into the brain.
This is a list of ARVs that do cross the blood-brain barrier and may help stop or slow HIV damage in the brain:
Nucleoside Reverse Transcriptase Inhibitors (NRTIs):
• Retrovir (AZT)
• Zerit (d4T)
• Epivir (3TC)
• Ziagen (abacavir)
Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs):
• Viramune (nevirapine) - high levels of this drug can cross into the brain
• Sustiva (efavirenz)
Protease Inhibitors (PIs):
• Agenerase (amprenavir)
Retrovir (AZT) was one of the first drugs studied for the treatment of ADC. Clinical trials found that it was helpful for patients with ADC. Based on these results, experts agree that other drugs that cross the blood-brain barrier—especially if they are used in combination—can help halt or reverse many of the symptoms associated with ADC.
While ARVs can treat the underlying cause of ADC, they may not effectively treat the symptoms. Some people may see their symptoms disappear slowly. Others may simply not get any worse. Sometimes, symptoms of ADC can actually become worse. Thus, it might be necessary to use additional treatments to help manage these symptoms.
Some of the drugs that have been shown to be effective include:
- Haloperidol (Haldol): Is used to treat a variety of symptoms frequently seen in dementia.
- Methylphenidate (Ritalin): Most commonly used to treat attention deficit disorder in children. It can also be used to help people with dementia to maintain their concentration.
- Chlorpromazine (Thorazine) and thioridazine (Mellaril): These are anti-psychotic drugs and can be used to control agitation and to stabilize severe behavior problems.
- Lorazepam (Ativan) and diazepam (Valium): Anti-anxiety/sedative drugs.
- Antidepressants: These include fluoxetine (Prozac) and bupropion (Wellbutrin). Antidepressants can help boost (or prevent) important electrical impulses in the brain. This may help alleviate behavioral and emotional symptoms of ADC.
Can it be prevented?
ADC is the result of two situations: immune suppression caused by HIV and the direct effects of HIV in the brain. ARVs, particularly those discussed in the last section of this lesson, can help prevent ADC, provided that treatment is started before immune suppression occurs (less than 200 T-cells).
Healthy tips for people living with ADC
Learning to live with ADC is more than just medications. Even though ARVs are often very helpful to people with ADC, they may not completely reverse the symptoms. Thus, it may be necessary to come up with some coping strategies—some basic tips—to make your life easier.
- Find support. It’s okay to ask for help or to simply have people to talk to about your fears and concerns. Friends and family members are usually a great source of support and help. However, this does not mean that you need to tell everyone in your family—or all of your friends—about your condition.
- Learn about dementia. As is true with almost every aspect of HIV and AIDS, you have a right to know about your condition and what may happen in the future. It’s important to talk with your doctor about your progress and to discuss treatment options that may be available to you.
- Keep active! One of the first things that many people with dementia do is to withdraw from certain activities—whether it’s spending time with relatives, visiting with friends, spending time outdoors, or hobbies. Having ADC can cause anxiety when in social situations or spending time alone, thus many people turn away from these activities as to not frustrate themselves or feel as if they are burdening others. But these activities are very important, especially for people with ADC. Everyone needs to feel useful and to have a sense of purpose – losing these is not a natural part of ADC.
- Keep a diary. It can be very helpful to write down things you want to remember or need to do in the future. Keeping these notes in the same place, such as in a notebook or diary, can help you keep your thoughts together.
- Stick a weekly checklist onto the fridge. No matter how many times you’ve done the same chores or run the same errands week after week, ADC might impair your ability to remember each and every task. Make a checklist of all your regular chores and errands and make duplicate copies of the list. As the week goes on, you should check off each task you complete. When the list is completely checked off at the end of the week, replace it with a new checklist.
- Write important reminders to yourself. Do you forget to turn off the oven? Do you forget to walk the dogs in the morning? Do you remember to take the garbage out every Tuesday night? By writing notes to yourself and sticking them where you’re most likely to see them every day – such as on the bathroom mirror or above the coffee machine – you’ll be providing yourself with reminders that are hard to miss.
- Keep important things together. Instead of scattering important things like money, keys, and eyeglasses around the house, it’s best to keep them all in one central place. There are also electronic tags that can be attached to these items to help locate them.
- Label cupboards and drawers. It can be very frustrating to know that you have something in your house but you don’t remember where it is. Try putting labels on cupboards and drawers reminding you of their contents.
- Notify utility companies. Forgetting to pay your phone bill, cable bill, or gas/electricity charges every now and then is common. But forgetting to pay the bills on a regular basis can result in service disconnections, which can be scary and extremely frustrating to deal with. Most utility companies can send notices to a specific family member or friend in the event of an overlooked bill. This can be very helpful, as a reminder from a loved one is much more pleasant than a warning from a utility company. However, this is a service that you must request—it is almost always free-of-charge—although it’s not necessary to disclose the exact details of your condition to the customer service agents.
- Install gas detectors and smoke alarms. Forgetting to turn off the oven or snuff out candles can have horrible consequences. Gas detectors and smoke alarms can alert you to trouble before it turns tragic.
To learn more about living with dementia, your doctor can refer you to an occupational therapist.
Tips for people who are caring for someone who has ADC
For HIV-positive people with ADC, learning to cope with the symptoms can be very frustrating. It can also be frustrating for friends and relatives who want to help but don’t quite know how. After all, none of us were born knowing how to care for someone with dementia.
Here are some basic tips for people caring for someone with dementia. For more information, we strongly encourage caregivers to seek out the expert advice of an occupational therapist.
- Help those with ADC to help themselves. People with ADC are not infants and do not need to be waited on hand and foot. In the previous section of this lesson, we discuss ways in which people with ADC can help themselves. Start by helping to put these basic tips into action.
- Patience will be your finest virtue. You must give people with ADC space to keep them doing as much as they can. Don’t take over! Let them make mistakes or fail, but don’t let them feel like a failure. Help them not to give up.
- Don’t let them become overwhelmed. Watch carefully for signs that they are blanking out or becoming anxious about certain functions.
- Household chores. People with ADC don’t necessarily need help doing chores around the house. What they may need is help remembering chores that are being overlooked. Start by putting signs around the house or weekly checklists on the fridge.
- Make bathrooms and kitchens safer. Kitchens and bathrooms are often cluttered places. If someone with ADC has problems with vision or coordination, navigating these areas can be scary and frustrating. Put things into drawers and cupboards and label their contents. It’s also best to purchase groceries that come in plastic containers, not glass. Transfer products that come in glass containers into plastic containers to help avoid breakages. Toilets and showers can be easily fitted with grab bars, seats, and handheld shower sprays.
- Improve communication skills. This is very important. If someone with ADC is watching TV and you want to ask a question or have a conversation, get his or her attention first or mute the TV. It can be difficult to focus on too many things at once. Also, don’t rush into something because they can’t think or speak fast enough to let you know whether they agree. Try to give time to respond—to let you know whether they really want to do it.
Are there any experimental treatments?
If you would like to find out if you are eligible for any clinical trials involving new treatments for ADC, visit ClinicalTrials.gov, a site run by the U.S. National Institutes of Health. The site has information about all HIV-related clinical studies in the United States. For more info, you can call their toll-free number at 1-800-HIV-0440 (1-800-448-0440) or email firstname.lastname@example.org.
Last Revised: January 18, 2016