HIV Australia | Vol. 8 No. 3 | October 2010

ANTHONY LYONS, RACHEL KOELMEYER, JEFFREY GRIERSON and MARIAN PITTS explore the pyschosocial challenges of growing old with HIV.

As we enter the fourth decade of the HIV epidemic, what it means to become infected and to live with HIV has changed enormously. This is largely a consequence of advanced treatments that now make it possible for people living with HIV (PLHIV) to live into old age.

Not surprisingly, the numbers of older people with HIV are growing rapidly. In the US, around 50% of all positive people are expected to be aged over 50 years by 2015.  ¹ A similar proportion is expected in Australia. In fact, a study of men who have sex with men in Australia has found the number of people living with the virus who are aged over 60 has increased by around 12% every year since the mid-1990s. ²

This good news also means we are now facing new frontiers. What is it like to grow old with HIV? What are the challenges? How can older HIV-positive people best be supported in their senior years? While the overall quality of life for this group has improved through highly active antiretroviral therapy (HAART), new challenges are emerging.

Already we know that HIV-positive people who are aged over 50 have a higher incidence of hypertension, low bone mineral density, and lipodystrophy than their HIV-negative counterparts. ³ They are also more likely to develop age-related illnesses at an earlier age, including coronary artery disease, osteoporosis, and dementia. ⁴ The risk of heightened toxicity from combining antiretroviral drugs with those for ageing-related illnesses has also become a growing concern, ⁵ potentially threatening further improvements in the quality of life for older HIV-positive people.

Of course, the ingredients that make up a high quality of life extend beyond good health. Our living conditions, relationships, the ways we access and gain support, and many other aspects of our psychosocial circumstances all contribute to our overall sense of wellbeing. Over the past twelve years, six separate surveys known as HIV Futures have been conducted by the Australian Research Centre in Sex, Health and Society (ARCSHS). ^6–11

Through these surveys, thousands of people from across Australia have described their challenges and experiences living with HIV. In the most recent survey, 92% were men (of whom 85% identified as homosexual), 7% were women, and less than 1% were transgender. Overall, 41% were aged over 50. Based on the findings, older people who are HIV-positive have good reason to feel optimistic about the future. However, there appear to be a number of challenges to attaining a high quality of life that need to be addressed. The following are some of the psychosocial areas from the HIV Futures surveys where such challenges have been identified.

Economic and living conditions

At the time of the HIV Futures 5 survey in 2005, Australian PLHIV who were aged over 50 were less likely to be employed than the under-50s and tended to work less hours overall in paid employment. They were also more likely to be living in poverty. Alarmingly, around 37% of older positive people were living below the poverty line compared to 25% of the under-50s.

On a positive note, data from the HIV Futures 6 survey in 2008 shows that while the over-50s are still less likely to be employed than those under-50, there is no longer a divide between the two age groups with regard to living in poverty. In 2008, approximately 30% of both the under-50s and over-50s were living in poverty. The reduction in the proportion of older HIV-positive people living in poverty is likely to be due to an increase in the number of hours worked and an increase in overall household income.

Relationships

Older HIV-positive people are less likely to be having sex than those under 50. However, a similar proportion of under-50s and over-50s report being in a regular relationship (44% and 41%, respectively). The difference between the age groups with regard to the proportion having sex is largely accounted for by fewer over-50s having casual sex.

Stigmatisation and discrimination

Around a quarter of older HIV-positive people report recent instances of discrim-ination or being treated unfairly as a result of their HIV status. Such discrimination can come from health service providers, such as being avoided or having treatment refused, as well as in the workplace and when seeking accommodation. On a positive note, the over-50s tend to report fewer instances of discrimination than the under-50s.

Support

While the over-50s are just as likely as the under-50s to use services targeting HIV-positive people, they are less likely to use non-PLHIV services, suggesting that older positive people have a greater reliance on the HIV support sector than their younger counterparts. Compared to the under-50s, the older group also report receiving greater support from healthcare workers, general practitioners, and PLHIV organisations – highlighting that health professionals and PLHIV groups can have an important role to play in the lives of older HIV-positive people.

The over-50s are more likely than their younger counterparts to know someone else who is HIV-positive and to feel supported by HIV-positive friends. Despite all this, with more than a third of older HIV-positive people taking medication for a mental health condition, such as depression or anxiety, there is an urgent need for more effective targeting of mental health support.

Are we seeing a cohort effect?

Programs and services that seek to enhance the quality of life for older HIV-positive people will need to take the above findings into account. However, longer term planning and the overall effectiveness of programs may well depend on the answer to one crucial question: to what degree do the psychosocial challenges and experiences of the current group of older positive people reflect a general pattern of ageing with HIV?

There are reasons to suggest that many of those in the current group of older people living with HIV have an experience of ageing that may not be reflected in future older positive communities. Large numbers of this group were infected in the 1980s and 1990s, at a time when living with HIV was a far more frightening and life threatening prospect than it is today.

The vast majority were gay men, many of whom lost friends to AIDS-defining illnesses and who lived in fear of dying themselves. They also suffered greater impairment to their day-to-day functioning, while also having to confront a lack of employment and a host of issues around being accepted by a public that was more fearful of HIV-positive people (and arguably more homophobic) than today.

In addition, we have seen changes in the treatment regimens available (from AZT monotherapy to HAART) and in treatment guidelines over the history of the epidemic. All these experiences, plus others, are likely to have shaped what it means to these people to be HIV-positive, as well as influencing the levels of assistance they require from individuals and organisations.

The consequences of these experiences may not all be negative. Having survived the pre-HAART era, many older people living with HIV may be particularly resilient. Living into old age, despite earlier prospects of dying young, may also appear a blessing to some and therefore a reason to feel positive about their lives. In fact, drawing again on HIV Futures data, when we compare positive people’s ratings of their overall wellbeing, not only do they average at the positive end of the scale, they are generally no lower for the over-50s than they are for the under-50s.

The impact of having been diagnosed in the pre-HAART era also becomes apparent when compared with those who were infected later. People, aged over 50, who were infected pre-HAART, tend to rate their wellbeing slightly higher than those infected post-HAART. They are also more likely to receive support from HIV-positive friends, but less likely to access and receive support from PLHIV organisations.What all this means is that identifying the challenges of ageing with HIV may not be straightforward.

The experiences of those who were infected pre-HAART may paint a different picture to the way ageing with HIV might look in the future, especially as more of those who were infected after the introduction of HAART enter old age.

Where to from here?

To understand the psychosocial challenges of growing old with HIV, an important step is to monitor changes in the quality of life of older people living with HIV from year to year. Only through such longitudinal research can we distinguish between the needs and experiences of the current older group and the general, more systemic patterns related to growing old with HIV.

Despite rapid growth in research on ageing with HIV, very little of the available data is longitudinal. Simple comparisons between older and younger people may not provide the necessary framework for identifying all the experiences and challenges of growing old with HIV. For this reason, researchers at ARCSHS, in collaboration with NAPWA and other PLHIV organisations, will soon be launching ‘LifeTimes’, a survey that comprehensively explores the health and wellbeing of older HIV-positive gay men and their HIV-negative counterparts. With the survey to be repeated every year, respondents will be given an opportunity to keep the PLHIV support community continually informed about their changing experiences of growing older with HIV.

How quickly and effectively health and social service providers adapt to and cope with this new frontier will depend on having an accurate, detailed and up-to-date picture of the changing health and psychosocial needs of a rapidly ageing HIV-positive community. This is especially so for those who were infected post-HAART as they enter old age and transform the demographics of the current older community.

Most critical of all will be the need for the HIV and aged-care sectors to work together, with a combined focus on both the clinical and the psychosocial, to ensure that programs and policies effectively address the diverse and changing needs of this community.

References

1. Effros, R., Fletcher, C., Gebo, K., et al. (2008). Aging and infectious diseases: workshop on HIV infection and aging: what is known and future research directions. Clin Infect Dis, 47(4):542–553.

2. Murray, J., McDonald, A., and Law, M. (2009). Rapidly ageing HIV epidemic among men who have sex with men in Australia. Sex Health, 6(1):83–86.

3. Onen, N., Overton, E., Seyfried, W., et al. (2010). Aging and HIV infection: a comparison between older HIV-infected persons and the general population. HIV Clin Trials, 11(2):100–109.

4. Simone, M. and Appelbaum, J. (2008). HIV in older adults. Geriatrics, 63(12):6–12.

5. Grabar, S., Weiss, L., and Costagliola, D. (2006). HIV infection in older patients in the HAART era. J Antimicrob Chemother, 57(1):4–7.

6. Lyons, A., Pitts, M., Grierson, J., Thorpe, R., and Power, J. (in press). Ageing with HIV: health and psychosocial wellbeing of older gay men. AIDS Care.

7. Pitts, M., Grierson, J., and Misson, S. (2005). Growing older with HIV: a study of health, social and economic circumstances for people Living with HIV in Australia over the age of 50 years. AIDS Patient Care STDS, 19(7):460–465.

8. Grierson, J., de Visser, R., and Bartos, M. (2001). More cautious, more optimistic: Australian people living with HIV/AIDS, 1997–1999. Int J STD AIDS, 12(10): 670–676.

9. Grierson, J., Pitts, M., and Misson, S. (2005). Health and wellbeing of HIV-positive Australians: findings from the third national HIV Futures Survey. Int J STD AIDS, 16(12):802–806.

10. Grierson, J., Pitts, M. K., and Thorpe, R. (2007). State of the (positive) nation: findings from the fourth national Australian HIV futures survey. Int J STD AIDS, 18(9):622–625.

11. Grierson, J., Power, J., Pitts, M., et al. (2009). HIV Futures 6: Making Positive Lives Count. Melbourne, Australia, The Australian Research Centre in Sex, Health and Society, Latrobe University.

Dr Anthony Lyons is a Research Fellow with the Faculty of Health Sciences at ARCSHS, and is the corresponding author for queries related to this article.

The Australian Research Centre in Sex, Health and Society (ARCSHS) is a leading national and international centre for research on sexuality, health and gender. ARCSHS conducts interdisciplinary research on sexuality and health, and promotes social justice outcomes using its research.

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