HIV-associated dementia

• HIV-associated dementia is the most severe form of HIV-associated Neurocognitive Disorder. It affects your thinking, mood, behaviour and movement. 

• Not everyone who has HIV/AIDS will develop HIV-associated dementia. 

• HIV-associated dementia isn’t common in Australia, thanks to modern treatments and antiretroviral therapies. Support is available.

About HIV-associated dementia

HIV-associated dementia is a brain condition linked to the Human Immunodeficiency Virus (HIV).

HIV attacks the body’s immune system and can lead to Acquired Immune Deficiency Syndrome (AIDS).

Some people with HIV/AIDS develop dementia symptoms. HIV-associated dementia affects your thinking, movement and behaviour. You might lose independence and quality of life.

Not everyone who has HIV/AIDS will develop HIV-associated dementia. In Australia, HIV-associated dementia is not common, but about a third of people with HIV/AIDS will develop a milder form of neurocognitive (brain and thinking) condition.

Causes of HIV-associated dementia

People with HIV/AIDS are at risk of developing HIV-associated dementia. It’s less likely in the early stages of HIV, but becomes more likely as your condition progresses.

The HIV virus infects and damages brain cells, but not the neurons that control your body, thoughts and actions. The damage to those other cells is what causes harm to your neurons.

This damage happens over time, mostly in the deeper parts of your brain.

These damaged neurons can’t communicate with each other as well as they used to. This affects your thinking.

Having HIV doesn’t mean you’ll definitely develop HIV-associated dementia. Modern treatments like antiretroviral therapy mean only around seven per cent of people with HIV develop dementia.

You’re at higher risk of developing HIV-associated dementia if you:

• Don’t take antiretroviral drugs
• have diabetes
• are older when you catch HIV
• have other infections
• have high immunodeficiency caused by HIV
• have generally poor health. 

HIV may make it more likely that you’ll develop other dementia-related conditions, like Alzheimer’s disease and Parkinson’s disease. We don’t understand exactly how HIV does this yet.

HIV-associated Neurocognitive Disorder (HAND)

HIV-associated dementia belongs to a group of disorders called HIV-associated Neurocognitive Disorder (HAND.) HAND includes two other, milder disorders:

HIV-associated asymptomatic neurocognitive impairment: “Asymptomatic” means “not showing symptoms”. You and people around you may not notice any changes in your thinking. Only medical tests can detect this condition.

HIV-associated mild neurocognitive disorder: This occurs when your thinking functions are mildly affected. Your symptoms are enough to affect your work, home and social life.

Signs and symptoms of HIV-associated Neurocognitive Disorder

Someone with HIV-associated Neurocognitive Disorder may experience:

• trouble sticking to medical advice or taking medication
• difficulty performing tasks, like managing finances or cooking
• getting worse at driving
• reduced performance at work
• finding it harder to plan activities
• finding it harder to learn new skills
• trouble thinking things through and solving problems
• memory loss
• struggling to understand what people are saying
• finding it hard to express yourself
• struggle to concentrate
• think more slowly
• have trouble with balance and coordination.

Though these disorders are milder, they’re still serious. If you have any of these symptoms, talk to your doctor.

Signs and symptoms of HIV-associated dementia

Symptoms of HIV-associated dementia usually develop slowly and get worse over time. They may also get worse for a while if you get sick with other illnesses.

Someone in the early stages of HIV-associated dementia may experience:

• trouble concentrating
• forgetting phone numbers or appointments
• thinking slowly
• taking longer to do complicated tasks
• losing track of daily activities
• feeling irritable or depressed
• problems with balance or walking
• poor coordination and a change in handwriting.

Someone in the middle stages of HIV-associated dementia may experience:

• trouble concentrating or performing tasks 
• taking longer to do everyday tasks, like eating and writing
• find walking, balance and coordination takes more effort
• caring less about people and things
• muscle weakness
• being slower to respond
• frequently dropping objects
• confusing the order of numbers or words.

Someone in the late stages of HIV-associated dementia may experience:

• being confined to bed
• psychosis or mania
• a lot of difficulty walking 
• losing control of your bladder or bowel
• losing all interest
• withdrawing from friends or society.

Diagnosing HIV-associated dementia

Currently there is no single test to tell if you have HIV-associated dementia.

A medical specialist with experience working with people with HIV will only diagnosis you with HIV-associated dementia after careful assessment. This might include:

• a detailed medical history
• a physical examination
• blood and urine tests
• a psychiatric assessment
• memory and thinking tests
• brain scans.

If the medical specialist can rule out any other causes, they may diagnose you with HIV-associated dementia.

Treatment and management of HIV-associated dementia 

If you’re HIV positive, talk to you doctor about regular tests of your thinking, mood and behaviour. The more results you have, the easier it will be to notices changes if they happen. Early diagnosis means you can start treatment as soon as possible.

Treatments for HIV-associated dementia include:

Highly active antiretroviral therapies (HAART)

Highly active antiretroviral therapies (HAART) refers to a combination of drugs that may be able to treat, and even prevent, HIV-associated dementia.

HAART doesn’t treat dementia directly. It treats HIV outside your brain. This helps your immune system fight HIV inside your brain.

Over 50 per cent of people with HIV-associated dementia experience significant recovery when they’re treated with HAART. They report “coming out of the fog”.

Talk to your doctor about the right combination of antiretroviral drugs for you.

Counselling

Talking to a counsellor or psychologist can help you manage the changes in your thinking, behaviour and mood.

Exercise and diet

Staying physically healthy is good for your brain. Eat a nutritious diet and get as much exercise as you can.

Get support

There’s still a lot of stigma around HIV/AIDS, but there’s also strong community and support for people who are HIV-positive.

For more support, contact:

• Health Equity Matters: the peak non-government organisation representing Australia’s community-based response to HIV/AIDS.

The information on this page was developed in collaboration with the Victorian AIDS Council.

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