50 Plus – the experiences of older people living with HIV

By Lisa Power, Policy Director (Terrence Higgins Trust, United Kingdom)

As treatments for HIV improve in both quality and accessibility, people are living longer with the virus. In some countries, provided their HIV is diagnosed in good time and treatment provided, people can now hope to live well into old age. The over 50s is the fastest growing group of people living with HIV. But what quality of life can they look forward to, and how can it be improved?

The UK’s 50 Plus research, done by Terrence Higgins Trust (THT), MBARC and Age UK for the Joseph Rowntree Foundation, surveyed 410 older adults with HIV – one in twenty of all those with HIV in the UK. They found that HIV systematically disadvantages those infected across their lifetime in three key areas – health, financial and social wellbeing. Older people with HIV, as a group, have twice as many other long term conditions (on top of their HIV); they are less economically active and less likely to have savings for old age; they are less likely to have their own home; they have significant levels of social isolation and poor mental health and considerable fears for the future. Not everybody ends up alone and in poverty, by any means, but some do and many others are disadvantaged across their lifetime in ways that could be changed, with proper planning and support.

These findings echo similar research in the US and the Netherlands, which suggests that whatever your health and social care systems, some of these problems will occur. For all these studies, people over 50 with HIV were a mixed group of the long term and more recently diagnosed. Obviously, those diagnosed longer ago - when everyone expected to die and many stopped work and spent their savings, and when many people saw their friends and partners die - had the greatest problems with health, wellbeing and poverty but even those more recently diagnosed were often disadvantaged in comparison with their peers.

With HIV, however well you start off, you may encounter stigma and ill-health that leads to broken relationships, lessens employment opportunities and damages your ability to provide for the future. At THT, we believe this means we need to change our services, not only to support those currently over 50 who are in greatest need, but also to work with younger people and those more recently diagnosed to minimise the problems they may face as they age with HIV. We need to help people stay in work or get back to it; manage their money and plan for the future; guard against social isolation and poor mental health; live healthy lives to reduce co-morbidities and improve quality of life.

One of the important aspects of this research is that it was undertaken at every stage with the close involvement of older people with HIV; on the advisory panel, as community researchers, as writers and as communicators of the findings. In the West, our elders are often neglected and survey respondents reported experiencing as much stigma around age as HIV. But older people with HIV are an enormous resource for the future.

The full report of A national study of ageing and HIV (50 Plus) is available at: http://www.tht.org.uk/binarylibrary/peoplesexperienceofhiv/50-plus-final-report.pdf

Article from IPPF HIV Update newsletter - Issue 27: http://www.ippf.org/en/Resources/Newsletters/HIV+Update+Issue+27.htm