Ageing well, and in good company

by Jae Condon, NAPWHA

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It is estimated that by 2025, half of all people with HIV in Australia will be over 50. The good news is that we are living longer than ever; and given the progress of HIV treatment and care, most of us are likely to live well into old age, with all the joys and challenges old age brings.

A person newly diagnosed with HIV today, who starts treatment in a timely fashion will live longer and healthier than any of their precedents, which is to be celebrated.  What is more hopeful is that they will not experience the gamut of loss, isolation, financial stress, side effects and health issues that earlier generations have endured. They will on average enjoy uninterrupted studies and careers, maintain intact social and familial networks and will be better off and supported throughout their lives.

Older people with HIV have not all been as fortunate.  Our experiences of HIV, particularly pre 1996 and the onset of successful combination therapy, can mean more health issues of higher severity, and the choices about how we live as we age may be limited by fewer resources.

Inflammation and ageing

Live long enough and you will accumulate health issues, and this is especially true for us. People with HIV tend to develop age-related health issues earlier than that of the general population. However, live smart and you can enjoy good health and a rewarding life well into old age.

Chronic HIV inflammation, or HIV associated immune activation, is caused by low levels of HIV in reservoirs that cannot be reached by current treatments.  This type of inflammation is thought to contribute to the early onset of age-related health issues.  The term ‘Inflammaging’ has been coined (no doubt by a homosexual) to describe this syndrome of premature ageing. In fact, prolonged HIV inflammation is thought to age people with HIV by ten to fifteen years, if unaddressed.

HIV inflammation is much higher in anyone who is not taking treatment, and taking effective treatment dramatically reduces HIV inflammation. Starting treatment as soon as possible significantly reduces the risk, and incorporating Integrase Inhibitors into your treatment regimen is thought to further reduce the risks.

Inflammaging is well studied and described by our clinical friends, and much research is underway internationally to find strategies to counter these effects.  As recently as the 2023 International AIDS Society (IAS) Conference in Brisbane results were released of a study that found that ‘statin’ medications can control HIV inflammation.

Statins are a class of drugs that are used to treat high cholesterol. This research demonstrated that statins reduce markers of HIV related inflammation, even in people with normal cholesterol. This is certainly something we should all be discussing with our HIV specialist.

Other important things to consider are that much, much higher rates of inflammation are seen in people who smoke (anything), take recreational drugs regularly, drink too much too often, are overweight, do not exercise, have high blood pressure, and eat a poor diet.  Even though we have regular blood tests, the results may not tell us everything about our weight or high blood pressure, which we can have at any age.

Don’t panic! 

Everyone experiences some form of systemic inflammation whether they have HIV or not.  People taking modern HIV treatments who have an undetectable viral load, who have healthy cholesterol levels, normal blood pressure, eat well, exercise regularly (long daily walks can be enough), do not smoke and are a healthy weight are going to have much lower levels of inflammation, and be much, much healthier, than an HIV negative overweight smoker who eats junk food and drinks beer in the morning, for example.

Also, there are many things that can help counter inflammaging related health issues, and it’s never too late to take them up. Maintaining a healthy weight and blood pressure, regular exercise and a healthy diet significantly reduce inflammation. Healthy decisions you make today will give great gains tomorrow and into the future.  There may even be medications that you can take to help you achieve your healthiest self.  Such a combination of strategies could be your biological Botox.

Talk to your doctor, dietitian, pharmacist, exercise physiologist, physiotherapist, nurse, HIV Peer Navigator or support worker and any other health professional involved in your care and support. Ask what you can do today to enjoy a healthier tomorrow.

Psychological stress can also contribute to elevated inflammation.  Talking to a therapist, good quality sleep, nurturing your spirit, maintaining a healthy social life, connecting with loved ones and friends, volunteering, hobbies, holidays, yoga, and meditation have all been demonstrated in quality research to improve all markers of inflammation.

Other sources of stress like a horrible workplace, abusive relationships, toxic friendships, and unideal living arrangements can also contribute to stress and poor health.  Without acting rashly, can you identify any stressful situations that you would change if you could?  These types of change need to be well thought out, so why not consider talking to a professional counsellor to help you to think about whether you might like to make changes to any of these situations.

Mental health? I’m not happy about it.

Mental health is important at any stage of life, and older people with HIV are more likely to experience mental illness and addiction, especially if they are isolated. Everyone deserves to be as happy and engaged in life as they can, whatever their circumstances.

That said, we do know from HIV Futures that many older people with HIV are enjoying a better quality of life than their younger comrades. This is a heartening finding but should be seen in context. There is recognised trend that ‘younger’ older people—those in their sixties—have a better time of it than those in their eighties.

It is understood that depression is experienced at higher rates among people with HIV, especially those from the LGBTIQA+ communities. Research shows clearly that treating depression assertively and maintaining mental health, at any age, keeps us resilient and protected against further bouts of depression as we age.

Could it be dementia? I forget.

In the early days of the HIV epidemic, before modern treatments, people with HIV were at risk of HIV related dementia. Thankfully, that is well in the past.  However, today we can sometimes develop symptoms of milder dementia, especially as we get older.

HIV can hide out in the brain, where not all HIV treatments reach. Low levels of HIV in the brain can cause symptoms of dementia. Early diagnosis and treatment can halt the progress of mild dementia, and even improve symptoms if diagnosed and treated early.

Importantly, many symptoms that may look like dementia can be symptomatic of other health issues including depression, anxiety, drug and alcohol use, fatigue, sleep apnoea, low iron, thyroid issues and more.  All of these can be treated, so if you think you might be experiencing any of these symptoms talk to your doctor as soon as possible.

There are many excellent services that support people with mild and more severe dementia.  We even have specific residential care for people with HIV living with dementia who can no longer live independently. These facilities have full programs that celebrate and support the lifestyles of the people who live there, including entertainment, outings, great food and are staffed by understanding people.

All I want is a room somewhere.

Many older people with HIV may have not had sufficient financial opportunities to make investments for retirement, and we are less likely to own our own homes or to live in secure housing. Worries about current or future living arrangements can be a great source of concern.

There are many ways to improve or to take advantage of current living conditions.  For example, there are many people who were in a relationship when they moved in together, have since split up, but continue to live together for convenience or financial reasons. They may have originally moved into privately owned, rented or public housing.

As they are no longer in a relationship, they each can now claim a full pension, and if one of the two was a carer for the other, that person can continue to receive or start to claim the carers allowance. You will need a letter from a social worker, or other recognised health professional, to give to Centrelink.  You will also need to fill in paperwork to declare that you are no longer in a relationship.

People living in homes they own that are too large for them may ask a known and trusted friend or relative to move in. This can help with the bills and security and provide company.  This is not for everyone as even the best people can test friendships when living in close quarters.  Many people enjoy pets.  They are great company and can also help with security, and even mice.

Other people who own larger homes may sell and move into supported residential care. These facilities can come in the form of a self-contained individual flat attached to a larger care complex. Food and other services can be provided, if requested, and there is access to other people and activities.  Great friends can be made, and great times can be had.

Some of us may choose to enter high level supported care, or a nursing home.  People may be understandably apprehensive making this decision.  There is concern that we may be at higher risk of stigma and discrimination when entering residential aged care, but it is important not to expect this or to look for it, and to approach this change of life with confidence and an air of mutual respect.

The Federal Government has rolled out a range of training and accreditation requirements for all Aged Care facilities in Australia. In short it is illegal to discriminate against people with HIV and those from the LGBTIQA+ communities.  A national organisation called ‘Silver Rainbow aged care awareness training’ assists organisations to meet new requirements to provide safe and inclusive care for older LGBTIQ+ people.

There are many checks in place to make sure that all people feel welcome and included in all Aged Care facilities.  In fact, many Aged Care facilities promote themselves as specifically inclusive of people of all sexuality and gender diverse groups.

There are many things to consider as we get older with HIV, and it can be difficult to navigate and keep track of all the important information.  Having just a few health conditions can qualify us for services through My Aged Care or the National Insurance Disability Scheme (NDIS).

NAPWHA is currently focussed on this area of work and is progressing numerous initiatives.

For older people with HIV wishing to access services specifically for them, we recommend checking out NAPWHA’s Older PLHIV Services Directory here:

A training module for those working with older people with HIV is also in development and will equip HIV Peer Navigators to help those navigating older age.

NAPWHA has also just become a member of the National Aged Care Alliance (NACA) which will help us to progress national policy changes that will benefit the ageing body positive in Australia.

Author details

Jae Condon works at NAPWHA in the HIV Health, Treatments and Ageing projects.

Jae is a Registered Nurse with a background in Mental Health.  He has worked with a range of HIV community organisations and has recently rejoined NAPWHA.

Published: 2023