Memory Challenges

Age alone puts you at risk for common memory problems. There are many causes, but the most serious cause is Alzheimer’s disease, which damages brain cells. People aging with HIV may get Alzheimer’s like anyone else, but HIV itself may also damage brain cells. Research studies are attempting to understand how HIV affects the cognitive status of older adults living with the virus.


HIV can change brain function and affect your day-to-day activities, including work, volunteering, and social and family life.


In some people, HIV can affect memory, reading, and math skills. It can also lower attention and impair the ability to process new information. HIV’s impact on the brain can also increase anxiety, reduce interest in life, and cause depression.
In some situations, older adults with HIV exhibit shaky hands, making it difficult to hold utensils or get dressed. Also seen are atypical leg movements which can lead to falls.

What you can do with your doctor


HIV meds can ease brain problems and prevent them from getting worse. If you are not already on HIV treatment, it is now recommended that everyone begin treatment when they are diagnosed.


If you have memory problems, you should ask your doctor whether you should see a geriatrician. A psychiatrist or therapist can help you with mood problems. If you have problems with movement or coordination, you should ask to see a physical or occupational therapist or a neurologist. A social worker can help you with problems with work or family life.

What you can do yourself


You should take the right number of pills at the right time of day as prescribed. You can use a pillbox organizer, set an alarm on your phone or elsewhere, or ask someone to remind you to take your meds. This is particularly important for your HIV meds. Adhering to your HIV treatment will lower your HIV viral load and reduce the risk of brain problems.


Some people try to maintain their brain skills by doing crossword puzzles or brain teasers. But according to Harvard Health, “There is some evidence that challenges like playing a musical instrument or learning another language have more benefits than repetitive exercises like crossword puzzles. Although “brain-training” programs are a multi-million-dollar industry, there is no conclusive evidence that any of them improves memory or reasoning ability. We don’t know whether playing brain games is helpful. Getting together with family and friends to play cards may be as good.”


Memory problems can cause health and financial problems as you get older. You should plan ahead. Think of someone you trust and ask them to make decisions about your money and health. This person is commonly referred to as a “proxy”. Your proxy will be a backup if the day comes when you cannot make decisions on your own. Tell him/her in advance how you want your money and health handled. If you do not know how to plan for your future health, ask your doctor. If you do not know how to pay for your future finances, ask a lawyer.

You can indicate your future wishes about your health and finances through a living will and a healthcare proxy. You should provide these documents to your lawyer, family members, and the person you designate to make your decisions. Keep your copy somewhere you can easily get to in case you need it in an emergency.


Probably the greatest fear we all have is that we lose the ability to think, including memory and being able to put together verbal language and written words into understandable statements. Alzheimer’s Disease is among the greatest concerns because of the total loss of these skills. The older person with HIV has these same concerns but especially the early loss of cognition (thinking). These concerns circulate widely among the community. The reality is that the data on cognition are variable and depend on the population studied. Importantly, the comparison population (the controls) must have similar characteristics to make any conclusions valid. However, testing does suggest that there may be some decrease in cognitive functioning, but much may be below the detectable level and not enough to affect daily functioning. There are no data to suggest that Alzheimer’s Disease is more frequent in the older adult with HIV. However, it must be recognized that most older persons with HIV have not reached the very old ages when the disease would be expected to be more frequent.


The older adult with HIV has various risk factors for neuropsychological impairment. These include a history of a very low CD4 level in the past, current low CD4 count, and a detectable viral load. Researchers have found that HIV can enter the brain and cause direct damage to cerebral tissues. In addition the presence of various comorbidities, such as diabetes, hypertension, hepatitis C, as well as substance use disorder, can also affect the brain. This can occur as direct effects on brain tissues or indirectly through affecting the blood vessels.


Neuropsychological testing is necessary for determining the presence and level of cognitive problems. There are various versions of these tests, but most include a memory test of words that need to be remembered after a few minutes, attention to a numbers list, subtracting a number multiple times, etc. Normal values have been established for performance comparison. These tests are used to establish a diagnosis of  “HAND” (HIV-Associated Neurocognitive Disorder). Although one study found that about 50% of those tested had no indication of the diagnosis, only a small number had any symptoms. In women with HIV under observation in a long-term research protocol which used similar women without HIV for comparison, a comprehensive neuropsychological test battery was administered. The effect of HIV on cognition was found to be very small except for women with low reading skills and HIV-related comorbidities. In another approach to diagnosis, various studies using MRI (Magnetic Resonance Imaging) techniques have been done. Small blood vessel disease of the brain can be diagnosed by this method. In one study there was an increased number of white spots (white matter lesions) indicative of blood vessel problems in the older adults with HIV than in the comparison group. These changes may predict future cognitive decline. In another study of those receiving MRI’s and followed for 4 years, there was no difference in the brain tissue between those with HIV and controls, although there was some reduction in cognitive functioning. This sampling of data suggests the uncertainty in determining how much effect HIV has on the brain. More studies are needed, and those older adults with HIV can be reassured that a reason for major concern has not been established.


The older persons with HIV need to maintain an open dialogue with their medical provider about concerns relative to cognitive functioning. At some point the provider may have new information relevant to the current status of research on the issue. If the patient feels that there has been a major change in memory or other neurological functions, then it will be appropriate to request testing with referral for neuropsychological consultation. If there are specific neurological complaints, then referral to a neurologist with the possibility of receiving an MRI is appropriate. In terms of what the older person with HIV can do for brain health, there is information from reviews of Alzheimer’s Disease prevention. Of the various approaches reviewed, there was some consensus that increased physical activity was one of the few activities that might be beneficial. This is a difficult area for older persons with HIV and for all older persons. But there are major research efforts under way to clarify the causes of cognitive decline and what might be done to treat it.