HIV encephalopathy is a serious complication of HIV. HIV affects many body systems, including the immune system and the central nervous system. When the virus reaches the brain, a variety of mental and intellectual problems can happen.

When HIV infection causes the brain to swell, it’s called HIV encephalopathy. Other names for this are HIV-associated dementia and AIDS dementia complex. This condition can affect motor functions and cognitive abilities, and lead to dementia.

Even though the virus can enter the brain fairly soon after infection, HIV encephalopathy tends to occur in advanced HIV, making it an AIDS-defining illness.

HIV encephalopathy can’t be cured, but it can be slowed or managed with treatment such as antiretroviral therapy.

HIV encephalopathy causes symptoms related to cognitive function, mood, and personality. For example, you might notice that it’s getting harder to remember details of the day. Or you’ve lost interest in what have always been your favorite activities.

It also causes problems with physical movement. For example, it might start to take longer to do simple tasks like tying your shoes or buttoning your shirt. Or you can’t walk as quickly as you used to, and you stumble more often.

These problems develop slowly and get progressively worse as the infection spreads. Symptoms vary from person to person and may include:

As early as a few months after contracting the infection, HIV can make its way to the brain. The virus crosses the blood-brain barrier through infected monocyte, blood lymphocytes, or endothelial cells.

HIV encephalopathy usually happens in the later stages of disease, though. In fact, it’s rare among people with HIV who are on antiretroviral therapy. It may develop when your CD4 count is low. CD4 T-cells are a type of white blood cell that helps fight infection.

In HIV encephalopathy, the brain swells. This affects both brain volume and brain structure, causing memory and cognitive problems and eventually dementia. The more the infection spreads within the brain, the worse the dementia becomes.

In the brain, the virus can mutate, making it quite different from HIV that’s circulating in the blood. This evolution and compartmentalization makes some treatments less effective in the brain than they are in other parts of the body.

HIV encephalopathy starts with mild symptoms that gradually worsen. These are the stages of HIV encephalopathy progression.

  • Stage 0. Your mental and motor functions are normal.
  • Stage 0.5, subclinical. You might have a few minor symptoms, such as slowed ocular movements or slowed arm and leg movements. Your gait and strength remain normal, and you can still go about your daily activities.
  • Stage 1, mild. There are definite signs of intellectual, functional, or motor impairment. This can be confirmed with neuropsychological testing. You continue to walk unassisted and are able to perform all but the most demanding aspects of your daily life.
  • Stage 2, moderate. You can still take care of your own basic needs, but your thinking is slowed. You can no longer work or perform more challenging daily activities. You can get around, but you may need a simple assistive device, such as a cane.
  • Stage 3, severe. Your intellectual capacity is greatly impacted. You can no longer follow events in your personal life or in the news. You have difficulty maintaining conversation. You’re having trouble with your arms, and you need a walker or other type of support to get around.
  • Stage 4, end stage. Your intellectual and social comprehension and output are at the most basic level. You don’t talk much, if at all. Some or all of your limbs may be paralyzed and you have urinary and fecal incontinence. You may be in an unaware or unresponsive state.

It’s estimated that the prevalence of HIV-associated neurocognitive disorders may be higher than 50 percent, particularly among older people. Cognitive impairment can interfere with your ability to take medicines as directed. That’s why it’s so important to monitor HIV progression and seek a diagnosis when you have new symptoms.

Cognitive impairment could be due to something other than HIV encephalopathy, though. Your doctor will want to rule out conditions with similar symptoms, such as:

  • other infections
  • other types of encephalopathy
  • neurological disorders
  • psychiatric disorders

HIV encephalopathy testing

There’s no single test for HIV encephalopathy. A doctor will begin by taking your complete medical history and performing a neurological examination.

This will include assessing basic physical abilities and movements. Depending on your specific symptoms and medical history, the doctor may order several of these blood tests:

Other diagnostic testing may include:

Cerebrospinal fluid studies (spinal tap or lumbar puncture) can be used to check for:

  • lymphocytic pleocytosis
  • cryptococcal antigen
  • bleeding or brain hemorrhage
  • other infections of the brain and spinal cord

HIV encephalopathy can’t be cured, but it can be slowed or managed in some people. Treatment will be tailored to your specific needs according to age, medical history, and overall health. How far AIDS has advanced and any other complications must also be considered.

Treatment may include:

  • Antiretroviral therapy. Antiretroviral viral drugs can improve symptoms of dementia. They can also reduce the amount of virus in your body, which may slow disease progression. Highly active antiretroviral therapy (HAART) is a combination of at least three of these drugs.
  • Antidepressants, antipsychotics, or stimulants. One or more of these medications can be used to help with specific symptoms such as depression, psychosis, and lethargy.

Drug or alcohol misuse can make dementia worse. If needed, substance abuse counseling may also be recommended.

If you’ve been diagnosed with HIV dementia, certain lifestyle strategies can help you manage going forward. Some of these are:

  • Create a routine to make it easier to remember daily tasks.
  • Organize your medicines so that it’s easier to remember to take them and to see that you’ve already taken the day’s dose.
  • Write things down. Notes and lists can help you stay organized and remember details.
  • Arrange your home so it’s easier to move around and get to the things you use the most.
  • Exercise regularly and eat well to feel your best each day.
  • Socialize. Stay active and involved with friends and family and keep participating in things you enjoy.
  • Try relaxation techniques like meditation, deep breathing, or massage.
  • If you live with someone, talk to them about how HIV encephalopathy is affecting you and let them know how they can help.

Even if you don’t need extra help now, it’s a good time to arrange for care you might need later, such as:

  • skilled healthcare or personal care services
  • housekeeping and transportation services
  • child care and pet care

Your doctor can guide you to resources in your area.

Once you know you have HIV, it’s crucial that you adhere to antiretroviral therapy. HIV encephalopathy is associated with AIDS, and antiretrovirals can help prevent HIV from progressing to AIDS.

You can still develop mild cognitive impairment known as HIV-associated neurocognitive disorder (HAND), but you’re less likely to develop HIV encephalopathy if you use HAART.

Although it can’t be completely prevented, antiretroviral medications have made HIV encephalopathy much less common than it used to be.

There’s no cure for HIV encephalopathy. Without treatment, HIV-associated dementia can be fatal within 3 to 6 months. As the condition progresses, mental and physical problems gradually reduce quality of life. Eventually, you’ll need more help to manage day-to-day life.

With treatment, you can slow disease progression and manage symptoms longer. HAART can prolong life expectancy for people with AIDS and HIV-associated dementia.

Everybody is different. How quickly HIV encephalopathy advances may depend other AIDS complications and how well you respond to therapy. Your doctor can review all this information to help you understand more about your personal outlook and what you can expect from here.

Learning you have HIV encephalopathy is a lot to take in, but you’re not alone. There are many support services for people living with HIV and AIDS, so give some thought to your specific needs. Define what you’re looking for in a counselor or support group before you choose.

Once you define your goals, start by talking with your doctor. Doctors’ offices, hospitals, and clinics are sometimes affiliated with specialized services in the area. They can refer you to psychiatrists, psychologists, or other therapists if you’re looking for individual or family counseling.

Local support groups are ideal if you prefer face-to-face interaction with people who understand what you’re going through. You can look for groups for people with HIV, AIDS, depression, or dementia.

Group members can share feelings, help each other cope, and come up with strategies for managing day-to-day activities. There are also groups for caregivers and loved ones in need of comfort.

If you can’t find a group nearby, you may benefit from online support groups. Online groups give you the freedom to participate when you feel like it and, if you prefer, with a bit more anonymity.

Before joining a support group, take the time to look into its mission statement, privacy policies, and other issues that are important to you. Attending one meeting doesn’t obligate you to continue if it’s not a good fit. Keep looking until you find a more compatible group.

Here are some ways to get more information about resources in your community:

Don’t forget to reach out to friends and family. Talking to your loved ones and maintaining social connections can keep your mind active and help you feel better.

HIV encephalopathy is a serious complication of HIV that usually develops when HIV progresses to AIDS. Inflammation in the brain causes cognitive problems, motor problems, and eventually dementia.

Adherence to antiretroviral therapy from the early stages of HIV can help prevent the disease progression that leads to HIV encephalopathy. It’s not curable, but treatment can ease symptoms and slow the progress of the disease.