HIV encephalopathy is a potential complication of HIV that results from inflammation of the brain. It can affect both brain volume and brain structure, potentially leading to a variety of mental health symptoms and intellectual difficulties.

Other names for HIV encephalopathy include HIV-associated neurocognitive disorder (HAND), HIV-associated dementia, and AIDS dementia complex. The latter two names stem from the fact that the condition can cause a decline in cognitive abilities and may lead to dementia.

At present, there is no cure for HIV encephalopathy. However, antiretroviral therapy can help manage the condition and slow its progression.

Keep reading to learn more about the symptoms and treatment of HIV encephalopathy, as well as the outlook for people with this condition.

A doctor holding a MRI brain scan to check for HIV encephalopathy.Share on Pinterest
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HIV is a virus that targets and weakens the immune system, which can increase the risk and impact of potential complications. One such complication is HIV encephalitis, which refers to inflammation of the brain. It typically occurs due to the effects of the virus on the brain or opportunistic infections, such as toxoplasmosis.

Evidence suggests that up to 60% of people with HIV may develop a form of HAND. HIV encephalopathy typically appears when HIV reaches an advanced stage, so it may present many years after the initial infection. The condition is most likely to affect people who do not take effective HIV medications and those with a very low count of CD4 cells, which are a type of white blood cell that fights infections.

HIV encephalopathy occurs less frequently in people who undergo early and continuous treatment, but doctors are increasingly recognizing less severe cognitive decline in individuals with HIV.

The symptoms of HIV encephalopathy can include:

  • memory loss
  • difficulty concentrating
  • slowed thinking
  • personality changes
  • depression
  • irritability
  • loss of motor skills or poor coordination

Researchers are still unsure of the exact mechanism that causes HIV encephalopathy to develop. However, most evidence suggests that it stems from the inflammation and damage that occur when the virus crosses the blood-brain barrier and affects the brain.

Some evidence also suggests that HIV can mutate once in the brain, making it different from the virus circulating in the rest of the body. This may cause some treatments to be less effective.

The World Health Association (WHO) lists HIV encephalitis as a symptom of the final, most advanced stage of HIV.

In addition, it is the most severe of the three forms of HAND:

  • Asymptomatic neurocognitive impairment: This form has no symptoms of cognitive decline.
  • HIV-associated mild neurocognitive disorder: A person with this disorder may have mild symptoms of cognitive decline.
  • HIV encephalitis: HIV encephalitis causes severe symptoms of cognitive decline.

Diagnosing HIV encephalopathy is difficult because many factors may contribute to the symptoms. These include:

  • nutritional deficiencies
  • depression
  • side effects of medication
  • opportunistic infections

When making a diagnosis, doctors may use the following diagnostic tests:

Without treatment, HIV encephalitis can be fatal. Evidence indicates that no single treatment can cure all the complications of HIV encephalopathy. People may require a variety of medications, such as opioids, anticonvulsants, antidepressants, and antiretroviral therapy, to manage different symptoms.

Antiretroviral therapy is the main treatment for HIV. It is a combination of medications that reduces the amount of the virus in the blood. Research suggests that the medications can reverse some of the damage that occurs from HIV encephalopathy, potentially resulting in higher scores on tests that measure thinking skills.

A 2021 article describes antiretroviral therapy as the most effective treatment for HIV encephalopathy, noting that it has decreased the prevalence of severe cases. The treatment helps by:

  • reversing some of the brain damage from HIV
  • improving scores on neuropsychological and cognitive tests
  • delaying the onset of symptoms that indicate brain damage

However, the effectiveness of antiretroviral therapy for milder forms of HIV-related cognitive decline is not clear. The lack of evidence stems from the fact that cognitive difficulties in such cases are subtle, so they sometimes remain undiagnosed.

Strategies to help a person with HIV encephalopathy in the home may include:

  • keeping the home environment familiar
  • using memory prompts, such as pillboxes, calendars, and lists
  • limiting the number of tasks that the person needs to perform at the same time

As communication can be challenging for people with this condition, it is helpful for caregivers and family members to make eye contact before speaking to them. Experts also advise caregivers to speak slowly while maintaining a respectful tone of voice.

People who are using antiretroviral therapy to control HIV are much less likely to develop HIV encephalopathy. Research suggests that less than 5% of individuals who take antiretroviral therapy experience this complication.

This finding indicates that the best way for a person to prevent the condition is to start treatment as soon as possible after receiving an HIV diagnosis.

A 2020 article reports that the mean survival time for people with HIV encephalopathy who do not take antiretroviral therapy is 3–6 months. Other factors that can negatively affect a person’s outlook include increasing age, a lower CD4 cell count, decreasing platelet levels, and a lower body mass index.

Antiretroviral therapy may slow the progression of the condition and increase life expectancy.

The Centers for Disease Control and Prevention (CDC) offer a list of resources to help with a range of issues, including those relating to housing, insurance, and disability benefits. The resources include a search tool to help a person find HIV medical care and mental health services in their area. There is also a webpage listing toll-free phone numbers in every state.

The Health Resources and Services Administration runs a program that provides medical care for people with HIV who have no or insufficient health insurance. The program works with cities, states, and community organizations.

HIV encephalopathy is a possible complication of HIV. A person with this condition has inflammation of the brain that usually leads to neurocognitive dysfunction of varying severity.

The condition typically appears in the later stages of HIV. There is currently no cure, but antiretroviral therapy may slow the progression of the condition.