1. Myth: Lots of older people living with HIV have dementia
Reality: While some decline in memory and thinking skills is a normal part of getting older, more significant changes are called ‘cognitive impairment’. The most common causes of cognitive problems in HIV-positive people are not related to HIV, but include:
- alcohol and drug use
- depression and other mental health problems
- Alzheimer’s disease
- stroke, small vessel disease (a narrowing of the small blood vessels in the brain) and other conditions that reduce blood flow to the brain.
The availability of effective HIV treatment means that these days, fewer people with HIV have cognitive impairment. But some research shows an increased risk of cognitive problems for people living with HIV on treatment, compared to HIV-negative peers. However, these findings are often based on testing that looks for minor changes in memory and thought processes that aren't usually noticeable in daily life.
Cognitive impairment is not the same as dementia, which is a more severe impairment that interferes with your daily life and independence. The specific form of dementia caused by HIV is now hardly ever seen except in people who are diagnosed with HIV at a very late stage, with a very low CD4 count.
See our page Cognitive impairment, dementia and HIV for more information.
2. Myth: Long-term survivors of HIV and people with HIV over the age of 65 have the same needs
Reality: The amount of time a person has been living with HIV can impact their health and support needs. Those who have been living with HIV for 20 or more years, often called long-term survivors, may have very different clinical and support needs from a person of the same age who only recently acquired HIV.
Those who are more recently diagnosed may need more support in areas of stigma and disclosure, as well as getting settled on their HIV treatment and building relationships with healthcare providers. Long-term survivors may be less likely to need support in these areas.
Some research has shown that long-term survivors of HIV are more likely to have multiple health conditions, including those known to have a stronger negative impact on quality of life. This may be because many long-term survivors lived with untreated, unsuppressed HIV for several years or took older medications which are now known to have long-term effects on the body. They are also more likely to take more medications and smoke compared to older people who were more recently diagnosed with HIV.
3. Myth: There’s nothing you can do to improve your health as you age with HIV
Reality: Lifestyle changes and medications can greatly improve your health, prevent illness or injury, and/or help existing issues not get worse. These changes include:
- taking HIV treatment
- keeping health-related appointments
- taking statins, blood pressure medication, and other preventive medication recommended by your doctor
- not smoking
- limiting drugs and alcohol
- being physically active and exercising regularly
- eating a balanced and nutritious diet
- keeping your brain active with puzzles, quizzes, reading, learning a new skill or anything else you enjoy that stimulates your mind
- staying socially active.
One very important lifestyle change that can greatly improve health is not smoking. Smoking is especially dangerous for people living with HIV. For people taking HIV treatment who have an undetectable viral load, smoking has a much greater impact on life expectancy than HIV infection. Smoking can shorten the life expectancy of a person living with HIV by an average of six years.
To learn more, see our page HIV and the ageing process.
4. Myth: HIV treatment is less effective as you get older
Reality: Studies show that HIV treatment works well for older people. Viral load drops to an undetectable level (the main aim of treatment) just as quickly as it does in younger people. Older people are often better than younger people at taking their medication as prescribed.
On the other hand, people who start treatment over the age of 50 may have a slower and less complete restoration of their immune system. The CD4 cell count doesn’t always rise as quickly as it does in younger adults.
See our page HIV treatment as you get older for more information.
5. Myth: People with HIV have a lower life expectancy
Reality: The outlook has never been better for people with HIV. With the right HIV treatment and care, most people can expect to have a near-normal life span.
In fact, a UK study showed that people living with HIV who have a good initial response to HIV treatment have a similar life expectancy to people without HIV. For example, a 50-year-old man who had a CD4 cell count over 350 and an undetectable viral load one year after starting HIV treatment could expect to live to the age of 83. A 50-year-old woman in the same circumstances could expect to live to 85.
Even when the initial response to treatment was not quite so good – for example with a CD4 count between 200 and 350, or with viral load still detectable after one year – people with HIV were predicted to live well into their seventies.
Lifestyle factors, such as smoking, can play a large role in lifespan. Healthy lifestyle changes can decrease your risk of death and disease.
See our page Life expectancy for people living with HIV for more information.
6. Myth: HIV is a young person’s disease
Reality: People acquire HIV at all ages and the number of older adults acquiring and living with HIV is increasing. Since 2018, new HIV diagnoses among people over 50 have been rising in the UK, reaching nearly 20% in 2022. Around half of all people accessing HIV care in the UK in 2022 were aged 50 or over, and 9% were 65 or over.
Globally, the number of people living with HIV over the age of 50 increased from 5.4 million in 2015 to 8.1 million in 2020.
Age-related changes to the immune system or mucous membranes (for example, the lining of the anus and vagina) may actually cause an increased susceptibility to HIV among older people.
7. Myth: Managing your health is the same for younger and older people living with HIV
Reality: As you get older, your healthcare team should be paying attention to much more than your HIV. Taking HIV treatment to reduce the amount of HIV in the body to a very low, ‘undetectable’ level is crucial, but is not the only thing that matters. Looking after your health also involves taking steps to reduce the likelihood of other health problems developing, having regular screening and testing, and managing any other health conditions you do have. Many older people with HIV say that their main medical concern is not HIV, but another condition they have.
If you have other health conditions, you are probably taking multiple medications. These should be monitored by your doctor since the interaction between different medications can increase the risk of side effects or complications. This may mean the dose for one or more of the medications needs to be adjusted.
Also, as you get older, your body may change. The liver and kidneys may work less efficiently, affecting the way a medication is processed in the body. Because of weight loss, decreased body fluid or increased fatty tissue, medicines may stay in the body longer and cause more side effects. Occasionally, your doctor may need to adjust your dose.
See our page HIV treatment and drug-drug interactions for more information.
8. Myth: Lots of people living with HIV get cancer
Reality: Rates of some, but not all, cancers are higher among people living with HIV compared to people without HIV of a similar age. This is linked to having a weakened immune system, inflammation from HIV, and lifestyle factors such as smoking.
While rates of cancer are high in people with HIV, this needs to be put into perspective. One study which tracked almost half a million Americans living with HIV found that if you took a group of 1000 people with HIV and followed them for 10 years, around 70 of them would develop cancer during that time.
Both HIV treatment and healthy lifestyle changes, such as quitting smoking, can greatly reduce your risk for developing cancer. When people living with HIV do have cancer, it is treated the same way as in people without HIV.
See our page Cancer and HIV for more information.
9. Myth: Social factors aren’t important to health
Reality: Social factors, such as connectedness, having a support system, and a sense of belonging, have a huge impact on your health, just like diet and exercise. Loneliness and isolation are very common among older people with HIV and studies have shown many people living with HIV who want services to reduce social isolation do not get enough of them. Being lonely has been linked to reduced activity, cognitive difficulties, stress, and depression. All of these factors can lead to poor health and poor quality of life.
10. Myth: People living with HIV going through the menopause can’t use hormone replacement therapy
Reality: HIV does not impact the types of treatment you can use to manage the symptoms of menopause, including hormone replacement therapy. If you are troubled by the symptoms of menopause or if they interfere with your day-to-day life, then hormone replacement therapy may help reduce symptoms and improve your quality of life. HIV treatment works well in people going through the menopause, but some HIV drugs can interact with hormone replacement therapy, so your dose may need to be adjusted.
There’s an unmet need for education and support in relation to the menopause, as people living with HIV very often report not having enough information and support on symptoms and treatment options. At the same time, studies have found that people living with HIV are more likely to experience menopause symptoms than those who do not have HIV. This includes sexual symptoms such as a lack of interest in sex and vaginal dryness, bodily symptoms such as hot flushes, and psychological symptoms such as depression and anxiety.
See our page on Menopause and HIV for more information.