Table of Contents
- HIV-Associated Brain Problems
- Diagnosing HAND
- Treatment for HAND
- Help for Memory Problems
- Taking Care of Yourself
The brain is a very important organ. It controls every function in our bodies and allows us to think, see, feel, touch, hear, smell, and move. The brain and the spinal cord make up the central nervous system (CNS).
While we do not know exactly how it happens, scientists believe that HIV enters the CNS within the first few weeks or months after a person is infected. Afterwards, the virus can lie hidden and inactive in the brain for a long time. Research studies have recently shown that the earlier people start HIV drugs once they know they are living with HIV (HIV+), the less likely the fluid in the CNS (called cerebrospinal fluid, or CSF) is to contain inflammatory elements and the less likely brain cells are to be damaged.
Sometimes HIV can cause damage to important parts of the CNS. Damage to cells in certain sections of the brain can lead to mild cognitive (thinking) problems including difficulty concentrating, confusion, and memory loss. However, this generally does not happen unless you have had HIV for a long time, have not been taking HIV drugs, or have been living with a very high viral load. This can lead to more severe HIV-associated dementia. Dementia is a long-lasting condition that can include memory loss, problems with reasoning, and personality changes.
Mild cognitive problems are not uncommon in people living with HIV. HIV-associated neurocognitive disorder (HAND) is a term used to describe a group of syndromes that include some combination of thinking, movement, mood, and/or behavior problems. Minor cognitive motor disorder (MCMD), mild neurocognitive disorder (MND), asymptomatic neurocognitive impairment (ANI), and HIV-associated dementia (HAD) are all forms of HAND. These symptoms usually only occur in people who have had HIV for a long time, have not been taking HIV drugs, or have been living with a very high viral load.
One of the more common forms of HAND is minor cognitive motor disorder. MCMD's symptoms can include a slightly reduced ability to think clearly, remember things, or perform eye-hand coordinated movements. MCMD can also include small changes in behavior or mood. This disorder is mild and can be mistaken as part of the aging process. Approximately one in every three HIV+ people will have symptoms of MCMD.
Asymptomatic neurocognitive impairment is a condition in which testing shows an HIV-associated reduction in thinking abilities which does not affect everyday function. Mild neurocognitive disorder is a condition in which testing shows an HIV-associated reduction in thinking abilities that does mildly affect how a person functions on a day-to-day basis.
A more serious condition called HIV-associated dementia (HAD) occurs less frequently, especially since newer HIV drugs have become available. People who have a CD4 cell count below 200 are at risk of developing HAD - generally the lower the CD4 count, the greater the risk. Also, having a high viral load in the blood or in the spinal fluid can increase the risk of developing HAD.
HAD is not really a disease, but a mental and physical state in which a person cannot perform normal activities of daily living without assistance (e.g., counting money, taking medications, preparing meals). HAD can show up suddenly as a dramatic change in behavior, thinking, and movement or MCMD can progress to HAD as the immune system gradually declines. However, MCMD does not necessarily progress to dementia.
The initial signs of HAND can be very difficult to notice. If you are experiencing memory problems or your family and friends comment on changes in your behavior or coordination, it is a good idea to start keeping a log. Note any problems you are having with:
- Balance or coordination
- Concentration or attention
- Completing tasks
- Getting lost in familiar places
- Forgetting telephone numbers
- Simple math
It will be important to bring this log to talk over with your health care provider as soon as possible. Even if you feel there is an explanation for the problems, it is important to tell your provider.
If your health care provider believes you may have memory loss, he or she will likely refer you to a specialist such as a neurologist (a physician who specializes in the brain and nervous system), a psychiatrist, or a neuropsychologist (a professional who specializes in testing how the mind functions) for a complete exam. This will include "neurocognitive" testing (tests of your memory and concentration, reasoning, coordination, and problem solving). These tests can detect small changes in your cognitive ability and provide important information.
You may also need to have a blood test called a lumbar puncture (also known as a spinal tap) to obtain a sample of cerebrospinal fluid. A needle is inserted between the bones of the spine and a small amount of fluid is removed. Lumbar punctures are done with local pain medication so there is not a great deal of pain. Many HIV+ patients avoid getting this procedure because it sounds frightening, but the information gained can be very helpful in making a diagnosis and selecting treatments.
Often, diagnosing HAND is a process that involves making sure your problems with memory or thinking are not the result of other, more common causes. There are many factors other than HIV that can cause mental function changes. Based on your test results, your provider can identify certain conditions or problems that may be causing these changes, such as depression or other psychological problems, tumors, excessive fluid in the brain, or injury to the brain.
HIV+ people with a weak immune system may also be at risk for opportunistic infections of the CNS such as:
- Neurosyphilis (syphilis in the brain)
- Cryptococcal Meningitis
- Mycobacterium avium complex (MAC)
- Tuberculosis (TB)
- Toxoplasmosis (Toxo)
- Cytomegalovirus (CMV)
- Primary CNS lymphoma
- Progressive Multifocal Leukoencephalopathy (PML)
Some of these conditions may be treatable with drugs, therapy, or other medical interventions. If these conditions are found not to be the cause of your symptoms, your health care provider may conclude that you are experiencing a form of HAND.
The best way to treat HAND is to control HIV by using HIV drugs. It is important to have an open discussion with your health care provider about your ability to take HIV drugs on a regular schedule. If you miss doses, your HIV may become resistant to the drugs you are taking and they can stop working. If you are having trouble remembering to get or take your HIV drugs regularly, friends and family members may be able to help. There are also some tips below for help with memory problems.
Another factor to consider is which HIV drugs will be able to cross into the CNS. There is a natural protective barrier, known at the blood-brain barrier (BBB), which makes it difficult for many substances, including HIV drugs, to enter the CNS. Some HIV drugs cross the BBB better than others. Your provider will choose the best HIV drugs for your overall treatment.
You can also consider taking drugs to treat the individual symptoms of your HAND syndrome, such as memory, behavior, and movement problems. There are medications that can help each specific area:
- Concentration problems – stimulants such as Ritalin (methylphenidate) and Adderall (dextroamphetamine and amphetamine). It is important to know that people who take these stimulants often become dependent on them.
- Social withdrawal – anti-depressants such as Prozac (fluoxetine) or Zoloft (sertraline)
- Behavior that is disruptive or offensive – antipsychotic agents such as Risperdal (risperidone), Quetiapine (Seroquel), and Aripiprazole (Abilify)
- Agitation and anxiety – some anti-depressants can help with anxiety, as can some anti-anxiety drugs.
Several non-HIV drugs have been or are being studied to see if they help reduce the symptoms of MCMD and HAD. Unfortunately, none of them currently offers a substantial solution to cognitive disorders associated with HIV.
Whether you have memory problems due to MND, MCMD, HAD, another condition, or the normal aging process, it can be very frustrating to have trouble remembering. There are things that you can do without drugs that may help. The following tips may be useful:
- Take time to learn new information – try not to remember things when you are under pressure, distracted or tired
- Use small recorders or note pads to keep track of things
- Put up 'post-it' or 'sticky' notes in important locations
- Use your cell phone to set daily alarms for HIV drugs or other things that you need to remember to do on a regular basis
- Find a system of organizing new information so that it has a connection with an idea, image, or another memory. For example, try associating someone's name with the shape of their face or a letter of the alphabet
- Try new activities during the day when you are at your best
- Remembering involves all of the five senses. Seeing a phone number, saying it aloud, and writing it down several times increases the chance of remembering the information
- Break large tasks into smaller sections
- Ask friends or family members to help you remember important things, like taking your HIV drugs regularly. They can remind you of things directly, and can help you develop a system for remembering.
You can also keep your brain more agile and healthy by keeping it active and exercising it, just as you would a muscle. Brain exercises include working puzzles (word, number, or jigsaw), playing cards, learning a new language, juggling, playing online brain games (e.g., Lumosity), or any physical activity that is new to you – from playing music to dancing to knitting.
Experiencing the symptoms of MCMD or HAD can be confusing and even frightening. One of the most important things you can do is ask for help. Do not be afraid to start a conversation with your health care provider, family, or close friends about any symptoms you may be experiencing that involve your thinking, behavior, or coordination. Seeking medical help early to find out what is causing the problem and starting treatment, if needed, is very important. People with severe HAD may need to go to a full-time assisted living facility for their own safety and well-being.
Taking effective HIV treatments to keep the virus under control is also necessary. However, people with CNS problems may need extra help remembering to take their medications. This is where support from family and friends may come in. You can also ask your health care provider and local AIDS service agencies for help. Finally, taking your HIV drugs regularly may be the best way to treat, and even prevent, HIV-associated brain problems.