In the mid to late 1980s, nearly half of all people with HIV eventually developed debilitating dementia or a serious brain-related infection. Fortunately, this is no longer true, at least not in countries where potent antiretroviral (ARV) therapy is widely available.
Today, HIV-associated dementia (known as HAD or AIDS dementia complex, ADC) is rarely diagnosed. However, recent evidence suggests that HIV is still affecting people’s brains—even when HIV levels are undetectable in the blood.
This is certainly no reason to panic. So far, it appears that HIV-associated neurocognitive disorder (HAND) is so mild that people don’t notice it. Often, it can only be picked up with extensive neurological and psychological testing. What’s more, some evidence suggests that people who take ARVs that pass into the brain might be less prone to develop neurocognitive problems.
There is still much we need to understand about how HIV affects the brain in people with well-controlled disease: How common it is, which people are most vulnerable to HIV-related brain damage, and whether and how quickly it can progress from a mild disorder to one that is more serious. Researchers are hard at work to answer these questions and to determine whether there are medications that can slow or minimize HIV-related neurocognitive problems.
In the meantime, there are things that you can do—such as minimizing heavy alcohol and substance use, treating depression and anxiety, and getting physical exercise—to help keep the brain healthy and functioning well. This lesson will help you understand HAND and the latest thinking on how common it is and how it might be prevented or treated.
What kinds of neurological disorders does HIV cause?
As mentioned above, people living with HIV are at high risk for brain-related problems, particularly when the immune system becomes so depleted that it can no longer fight off the virus or other threatening infections. These include HAD, progressive multifocal leukoencephalopathy (PML), toxoplasmosis and cryptococcal meningitis, among others. HIV can also lead to other types of nerve damage outside of the brain, including peripheral neuropathy.
HAND is a broad term used to describe problems related to thinking, memory and mood—and sometimes physical coordination and function. HAND is often so mild that these symptoms are barely detectable and unnoticed by the person with the condition. In this form, it is called asymptomatic neurocognitive impairment (ANI). HAND can also cause mild-to-moderate symptoms, at which point it is referred to as mild neurocognitive disorder (MND). In its most severe form, people may progress to HAD. All of these, from the asymptomatic to the debilitating, are covered under the term HAND.
What causes HAND, and how common is it?
There are a number of theories for how HIV causes HAND. The most widely cited explanations have to do with a one-two punch whereby HIV weakens the immune cells necessary for protecting people’s neurons—the cells that make up the brain and nervous system—while simultaneously revving up the immune system to the point where inflammation damages neurons over time.
Estimates on the prevalence of HAND vary. In one large study, up to 50 percent of people were diagnosed with HAND—the vast majority with asymptomatic or mild impairment—though other studies have found rates as low as 15 percent. HAND appears to be more common in older people, people coinfected with HIV and hepatitis C virus (HCV), those with cardiovascular disease (CVD) and those who’ve been HIV-positive for a long time. People with uncontrolled HIV also appear to have higher rates of HAND than people with undetectable HIV levels.
What are the symptoms of HAND?
In its most severe form, HAD, the damage to the brain may be extensive and difficult to recover from. People diagnosed with HAD typically have severe problems with memory and the ability to pay attention for long periods of time. It can also lead to wild mood swings and loss of physical coordination or even incontinence. For a complete exploration of HAD, click here.
With the milder form of HAND, symptoms can be so minor that only the most sensitive tests can detect them. Often, people don’t even realize that they have developed such symptoms. In people who do have noticeable symptoms, the signs can include:
- Difficulty recalling things that you’ve just read or heard
- Slower recall of facts and memories
- Trouble paying attention for long stretches
- Difficulty learning new tasks
- Feelings of sadness, hopelessness or anxiety
- Diminished reflexes
- Feeling “fuzzy headed”
These symptoms are quite common in their milder form. However, they can be caused by problems other than HAND. Such problems can include CVD, coinfection with hepatitis C virus (HCV), clinical depression and anxiety—both of which are found at high rates in people with HIV—and overuse of alcohol or recreational and prescription drugs. Symptoms can also be caused by a variety of medications, including ARV drugs such as efavirenz (found in Sustiva and Atripla). These known causes of neurocognitive problems can make it difficult to sort out exactly what is responsible for individual symptoms, but most providers prefer to rule out other causes before issuing a diagnosis of HAND.
Does mild or moderate HAND always progress to a more serious disease?
Though researchers are concerned about the high rates of HAND found in some studies, and what they might mean for people as they reach their 50s and 60s, it’s important to note that data are conflicting and incomplete. In some studies, up to 30 percent of people had at least a slight worsening of symptoms over a two-year period. Other studies, particularly in people with undetectable HIV levels, found less evidence of HAND progression, at least over the short term.
The brain damage seen in people living with HIV is similar to the damage seen in people with early stage Parkinson’s disease and Alzheimer’s disease. However, no studies have shown that either of these diseases is occurring at higher rates in people with HIV than in HIV-negative people. It will likely take a number of years before a clearer picture emerges because the largest cohort studies will have to accumulate enough HIV-positive people who are older than 60.
How is HAND diagnosed?
As was mentioned above, most providers will do what they can to rule out all other causes before settling on a diagnosis of HAND. If HAND is suspected, a diagnosis should be sought from a neurological specialist familiar with HIV, who can conduct the kinds of sophisticated tests necessary to make such a diagnosis. Thus far, however, most providers don’t recommend conducting such time-consuming and expensive testing unless people are exhibiting troubling symptoms.
That said, not all general practitioners or infectious disease specialists routinely screen for neurological and mental health problems. If you think you are having trouble with your thinking, mood or memory, it can be particularly helpful to document those problems—especially if they persist for more than a few weeks—and then ask your regular provider for a referral to a specialist.
Can HAND be prevented or treated?
It’s not yet clear whether, or how, HAND can be prevented, but experts believe that a number of factors can significantly reduce the odds of developing HAND.
Control HIV levels: Keeping HIV in check with ARVs is one method that appears to help a great deal. This is especially true for HAD. As the number of people with well-controlled HIV rose following the introduction of potent combination ARV therapy in the late 1990s, the prevalence of HAD plummeted dramatically. Effective ARV therapy also appears to limit even the milder forms of HAND. According to at least one study, when comparing people who have undetectable HIV levels with those who have uncontrolled virus, people with undetectable HIV were far less likely to develop HAND, and if they had asymptomatic or mild HAND, the disease was less likely to progress.
There is also evidence that drugs capable of crossing the barrier between the brain and the blood stream do a better job of protecting immune cells in the brain. Modern ARVs with better central nervous system penetration include abacavir (found in Ziagen, Epzicom and Trizivir), emtricitabine (found in Emtriva, Truvada and Atripla), efavirenz, Prezista (darunavir), Kaletra (lopinavir plus ritonavir), Selzentry (maraviroc) and Isentress (raltegravir). Older drugs that also have good penetration include Retrovir (zidovudine), Viramune (nevirapine), Crixivan (indinavir) and Lexiva (fosamprenavir).
Clinical trials have not yet confirmed whether it is necessary to use a regimen containing at least one of these ARVs in order to prevent HAND.
Treat other causes of neurological problems: A number of diseases and conditions can worsen brain function and increase the risk of harm from HIV-related inflammation. CVD—including high blood pressure, high cholesterol and triglyceride levels, and gut fat accumulation—can put stress on the brain in a couple of ways. First, some forms of CVD limit the amount of oxygen that makes it to the brain. Second, nearly all forms of CVD cause immune cells to become inflamed throughout the body.
HCV and hepatitis B virus (HBV) can also lead to greater inflammation in the brain, as can chronic kidney disease and liver disease. Researchers have also pointed out that chronic depression, anxiety and other mood disorders are tied to greater inflammation in the brain. Addressing each of these conditions can sometimes ease neurocognitive symptoms.
Get plenty of physical exercise: Numerous studies confirm that regular aerobic exercise protects the brain significantly. Though a provider should confirm you are healthy enough for a new exercise program, most people can at least take daily walks. Experts generally recommend at least 30 minutes of exercise that raises your heart rate five days per week in order to see the best benefits in preventing or slowing the development of neurological problems.
Stay socially engaged: Social engagement not only promotes longer life spans, but also helps keep your brain in tip-top shape. There are a variety of ways to get connected socially if you aren’t close to family and don’t have many friends. Many local AIDS service organizations (ASOs) have support groups for people with HIV to connect with one another. Volunteering with a charity that works on causes you believe in, or with a political campaign, can also help you connect socially. Finding local groups of people to exercise with would accomplish two goals: social connection and fitness. The website meetup.com can be a way to find others who share your interests and hobbies.
If you are unable to get out of your house easily, or if you live in a rural area without many opportunities to meet like-minded folks, it is possible to connect with others online in forums. Check the POZ Forums for topics that interest you, and begin connecting with others today.
Stimulate your mind: Lifetime learning has been associated in a number of studies with a lower risk—or at least lower severity—of dementia as people grow older. No studies have confirmed that the same thing is true in people with HIV, but it certainly couldn’t hurt to engage in tasks that require you to learn new information or skills. Such activities can include taking a class of some kind, playing logic and memory games such as sudoku or crossword puzzles, or joining a book club.
Seek out cognitive rehabilitation therapy: Cognitive rehabilitation therapy is designed to help people relearn cognitive skills they have lost as a result of damage to the brain, and to learn new skills if old ones can’t be relearned. A variety of techniques, some involving the use of computers, can be employed to help with skills development. Therapists will generally also focus on practical tips for dealing with problems handling everyday tasks. To learn more about cognitive rehabilitation therapy or to find a trained professional click here.
Last Revised: January 18, 2016