Understanding HIV-Associated Dementia: From Diagnosis to Prognosis

To properly understand the meaning of HIV-associated dementia, also known as HIV encephalopathy or AIDS Dementia Complex, it helps to first understand the general dementia diagnosis and its effects.

The United States Government’s National Institute on Aging defines dementia as follows:-

Dementia is the loss of cognitive functioning – thinking, remembering, and reasoning – to such an extent that it interferes with a person’s daily life and activities. Some people with dementia cannot control their emotions, and their personalities may change. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person’s functioning, to the most severe stage, when the person must depend completely on others for basic activities of living.

There are many types of dementia, with the most diagnosed being Alzheimer’s disease, Frontotemporal dementia, Lewy Body dementia, Vascular dementia, and Mixed dementia – a combination of two or more types.

HIV-associated dementia results from the HIV infection and is not as common. It is usually identified in the advanced stages of the disease and is extremely rare among people living with HIV who are undergoing HAART, a highly active antiretroviral therapy.

(HIV-associated dementia) can be treated to some degree and may even be preventable. The best treatments seem to be the anti-HIV drugs. Initially it was feared that highly active antiretroviral therapy (HAART) would not be effective against HIV in the brain, because many of these drugs do not cross the blood-brain barrier. However recent research has shown evidence of improvements in dementia and other neurological problems due to HAART.

Dementia Australia

Experts believe that HAART’s effectiveness is due to it helping to maintain the overall immune system. The HIV-associated neurocognitive disorder, or HAND, which is a far milder neurological disorder, may still occur.

What causes HIV-Associated Dementia?

HIV infections infiltrate the brain early in the disease process. Within a few months of a person contracting HIV, it can make its way to the brain by crossing the Blood-Brain Barrier, the blood vessels that vascularize the central nervous system. HIV in the brain may not be evident for a sustained period but, without the use of antiretroviral drugs, it will eventually cause HIV-associated dementia. This is caused by swelling of the brain in those living with HIV. The wider the spread of the infection in the brain, the more chance that symptoms will become evident. A low CD4 count (CD4 T-cells are white blood cells that help fight infection) will increase the chances of HIV-associated dementia developing.

The HIV virus can mutate in the brain, acting differently from HIV that spreads through the bloodstream. According to a Plos Pathogens research study, this mutation means that certain treatments become less effective in the brain compared with other areas of the body. HIV-associated dementia affects the brain’s function and structure, altering motor functions and cognitive abilities. It is an AIDS-defining infection.

According to a PubMed Central® article, HIV-associated neurocognitive disorders are evident in over 50% of people living with HIV. This does not mean that HIV-associated dementia is present, with early antiretroviral treatment decreasing the risk of dementia occurring. Cognitive disorders may certainly hamper the ability to take medication as prescribed, meaning that a frequent assessment of HIV neurocognitive progression is important.

Image: Maya Kruchankova/Shutterstock.com.

What to Consider when Assessing Potential HIV Neurocognitive Progression

Further steps, like visiting a GP, should be taken if experiencing any of the following symptoms:-

  • Difficulty following and participating in conversations.
  • Trouble speaking clearly or audibly.
  • Unusual problems when working.
  • Inability to complete daily health tasks like washing, or brushing teeth and hair.
  • General apathy towards previously enjoyable activities. 
  • Depression or social withdrawal.
  • Forgetfulness or trouble concentrating.
  • Increased weakness.
  • Struggling to walk normally.
  • Shakes or tremors in the hands and upper body.
  • Encephalitis, when membranes of the brain and spinal column swell.

Displaying or experiencing any of the above certainly doesn’t mean HIV-associated dementia has developed, with numerous other possible reasons for symptoms. Whatever these are, they should urgently be medically identified.

Diagnosing HIV-Associated Dementia

A GP may order blood tests and complete further diagnostic testing to rule out any possible causes.

Blood tests can be done to ascertain protein levels, blood glucose levels, liver function, CD4 and viral load, toxoplasmosis, vitamin B12 levels, and CMV. Diagnostic tests could be considered, dependent on blood results or urgency. These tests might include an EEG to analyse the brain’s electrical activity, or a CT scan or MRI of the brain to identify signs of atrophy, cerebrovascular disease or other neurological disorders. Neuropsychological or mental status testing can also be done to evaluate cognitive brain function and behaviour.

The blood and further diagnostic tests are carried out and then analysed. Following these, specialists may consider a spinal tap or lumbar puncture to check for cryptococcal disease, brain haemorrhage or bleeding, lymphocytic pleocytosis, or other brain or spinal cord infections.

HIV-associated dementia is diagnosed by ruling out any other diseases or disorders. Although not curable, taking steps to manage or slow down its progression, in some cases, is possible.

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Treatment of HIV-Associated Dementia

Medical specialists take a number of factors into consideration before prescribing medication or assigning treatments for HIV-associated dementia. Age, medical history, and general level of health will be assessed, along with a tolerance for medications, medical procedures, or therapies.

Personal treatment preferences and opinions of the person living with HIV and the healthcare provider will all be considered. The degree of the problem and expectations for the course of the problem will also be taken into account.

A number of different treatment options are available, depending on the above and on their relevance to specific cases.

  • Antiretroviral therapy – This is an aggressive medical treatment that directly targets AIDS in the body and can ease HIV-associated dementia symptoms.
  • Prescription medication – Doctors might recommend stimulants, antidepressants, or antipsychotics depending on the cause and progression of dementia.
  • Lifestyle adjustments therapy – Therapy assisting with brain function, exercise, and routine could be incorporated in order to slow the progression of dementia.
  • Methods of coping – A full-time or part-time caregiver might be suggested when severe dementia symptoms are present.
  • Drug or alcohol abuse counselling – People living with HIV who have existing drug or alcohol problems will invariably be sent for counselling, as this abuse affects the severity and progression of dementia.

Stages of HIV-Associated Dementia

There are numerous stages applicable when diagnosing HIV-associated dementia in a person living with HIV:-

HIV-associated dementia is not at all evident in the initial Stage 0 stage, but becomes noticeable in the subclinical Stage 0.5. At this point, slowed arm and leg movements occur but daily tasks and routines do continue as normal.

Stage 1 is identified through obvious signs of motor-functional and intellectual impairment. Activities like walking are carried out normally but one begins to struggle with more taxing daily tasks. Stage 1 diagnosis is generally confirmed through neuropsychological testing.

Stage 2 occurs when fundamental needs become difficult to carry out without assistance. Slowed thinking and decision-making occur and working becomes nearly impossible. Assisted walking is needed, generally with the use of a cane.

Stage 3 is severe. Daily personal and news events cannot be followed. Self-care is not possible as neurological and motor functions are severely hampered. Conversations can’t be started or followed. Moving about without a walker or human assistance is practically impossible.

Stage 4 means that only basic social and intellectual output are evident. Paralysis in one or all of limbs occurs and urinary, and faecal incontinence is evident. A near vegetative state, with no awareness of, or responsiveness to, surroundings exists. Stage 4 is known as the end stage.

Managing HIV-Associated Dementia

HIV-associated dementia, if diagnosed early enough, necessitates urgent steps for easier management being taken as the infection progresses. Plans to make future life with the affliction as comfortable as possible need to be put in place. This provides reassurances that dementia could be delayed in advancing as quickly. Adjusting life in the following ways will assist:-

  • Making lists and notes to help with organisation and remembering details.
  • Rearranging living areas for easy access to regularly used items and easier movement.
  • Involving loved ones by explaining the effect of HIV-associated dementia, both in the present and in future, and coming up with ways that they can help.
  • Meditating, adopting deep breathing exercises and going for regular massages.
  • Listening to music and reading to enhance brain function.
  • Exercising daily.
  • Adopting a healthy diet.
  • Keeping active and involving family and friends to maintain participation in enjoyable outings and activities.
  • Contacting any relevant support or care groups
  • Arranging for current or future child, pet and housekeeping services, food delivery, transportation and qualified health and personal care options.
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What is the Prognosis of an HIV-Associated Dementia Diagnosis?

Like all other forms of dementia, HIV-associated dementia is a progressive condition and there is no recognised cure. Symptoms will worsen over time.

Patients with HIV infection and untreated dementia have a worse prognosis (average life expectancy of 6 months) than those without dementia.

Dr. Juebin Huang, Department of Neurology: University of Mississippi Medical Centre

With the use of strong antiretroviral therapy like HAARP, this timeframe can be substantially increased. Abstaining from drugs and alcohol while practicing brain exercises through music and reading, nutritional eating and incorporating healthy lifestyle choices are likely to enhance outcomes even further.

AIDS complications and general illness can cause dementia to progress more rapidly. Everyone is unique so it is difficult to accurately predict timeframes in individual situations. HIV-associated dementia life expectancy will depend on the stage of dementia and the age, habits and overall health of the affected party.

Cover image: Steady Health

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