What is HIV-related dementia?

HIV/AIDS affects many of the body's organ systems, including the brain and nervous system. Most people don't know that HIV actually makes its way to the brain early in the disease process. HIV encephalopathy is caused by HIV spreading in the brain and harming it. It is 1 cause of dementia in people who have HIV. The greater the spread of infection in the brain and the more damage that results, the worse the dementia symptoms may become.

Dementia from HIV/AIDS is also called HIV-associated dementia. In its most severe form, it's called AIDS dementia complex. It can be a serious result of HIV infection. It is most often seen in advanced stages of the disease.

What causes HIV-related dementia?

When HIV spreads to the brain, it causes inflammation and damage to brain cells. Unchecked over time, it will often cause nervous system problems or thinking problems that lead to dementia. The greater the spread of infection in the brain and the greater the damage that results, the worse the dementia symptoms become. People with HIV may also become infected with other organisms, such as syphilis, cytomegalovirus, and toxoplasmosis. They can also develop cancer, such as lymphoma of the central nervous system. Each of these infections or health problems can cause a drop in mental function, very much like that caused by HIV.

What are the symptoms of HIV-related dementia?

Symptoms seen with HIV-related dementia include:

• Memory loss

• Thinking problems

• Trouble concentrating or staying focused

• Trouble speaking clearly or accurately

• Lack of interest in activities you used to enjoy

• Slow loss of motor skills, or less coordination

• Rapid changes in mood

These symptoms may look like other health problems. Always see your healthcare provider for a diagnosis.

How is HIV-related dementia diagnosed?

Your healthcare provider will ask about your past health. You will also have a full nervous system and sensory exam. You may also need these tests:

• Mental status test. This is a brief and simple test of memory and some other common thinking skills. It is often part of a full nervous system exam.

• Neuropsychological testing

• Basic tests of physical abilities or movement

• MRI. This imaging test uses a combination of large magnets, radio waves, and a computer to make detailed images of organs and structures in the body.

• CT scan. This imaging test uses a combination of X-rays and computer technology to make images of any part of the body, such as the bones, muscles, fat, and organs. CT scans are more detailed than X-rays.

• Blood tests

• Spinal fluid test. During this procedure, a healthcare provider puts a hollow needle into the lower back (lumbar spine).

How is HIV-related dementia treated?

Treatment will depend on your symptoms, age, and general health. It will also depend on how severe the condition is.

Treatment often involves:

• Antiretroviral therapy. This treatment helps to control the HIV in the body. It allows the body to try to reverse some of the damage. It can sometimes help ease dementia symptoms. The best way to prevent dementia is to take antiretroviral medicines continuously from the time you are diagnosed with HIV. The goal is to keep your HIV viral load "undetectable."

• Substance or alcohol use counseling. People with HIV who use drugs or alcohol can have more severe dementia symptoms.

• Prescription medicines. Along with other medicines you take for HIV/AIDS symptoms, your healthcare provider may give you antidepressants, antipsychotics, or stimulants. Deciding which one will depend on your symptoms.

• Lifestyle changes. A structured routine will help you to deal with some of the symptoms of dementia. Writing lists can help you stay organized and remember important details. A neurologist may advise working with a special therapist who can help you learn to better manage daily life.

• Coping strategies. If dementia symptoms become severe, you may need help at home from a skilled caregiver. People with HIV-related dementia may develop depression. They may need counseling and possibly antidepressants or other treatments.

What are possible complications of HIV-related dementia?

The slow loss of mental clarity and physical coordination can seriously reduce quality of life and day-to-day function. People with the brain damage leading to dementia can develop seizures (convulsions). Without treatment, HIV-linked dementia can be fatal.

What can I do to prevent HIV-related dementia?

People who are taking antiretroviral therapy that is well-controlled ("undetectable viral load") are much less likely to get HIV-related dementia. A milder form of thinking problems (mild cognitive impairment) may still occur, but is also less common than if the person was not taking antiretroviral medicines. This condition is called HIV-associated neurocognitive disorder (HAND). 

Living with HIV-related dementia

Based on your level of dementia, you may need different therapies. HIV-related dementia may gradually get worse, especially if your HIV infection is not well-controlled. You will need more care as the disease gets worse over time.

When should I call my healthcare provider?

If you, a family member, or friend notice changes in your ability to speak, focus, or concentrate, talk with your healthcare provider. These symptoms are common to other health problems, such as other infections, depression, and nutritional deficiencies. Also talk with your healthcare provider about unusual shifts in mood or emotions and changes in social behavior. Best results are achieved with early diagnosis and treatment.

Key points about HIV-related dementia

• HIV-related dementia occurs when HIV spreads to the brain. It is most common in people with advanced, untreated HIV infection.

• Symptoms of this type of dementia include memory loss, trouble thinking, trouble concentrating or speaking clearly, lack of interest in activities, and slow loss of motor skills.

• Medicines for treating HIV-related dementia and its related symptoms include antiretrovirals, antidepressants, antipsychotics, or stimulants.

• People with HIV who use drugs or alcohol can have more severe dementia symptoms.

• Your healthcare provider may suggest lifestyle changes and coping strategies that can help you manage dementia.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your provider if you have questions.