Disadvantages for HIV+ Over 50s
posted: 22/07/2010
Older people with HIV face many disadvantages, study finds
Most people with HIV aged 50 and over can expect to live a near normal lifespan thanks to modern HIV treatments, but are substantially more disadvantaged than their people of a similar age who don’t have HIV.
According to 50 Plus, the first national study of ageing and HIV, launched in Vienna at AIDS 2010, the 18th International AIDS Conference, older people living with HIV have worse health, are poorer, and fear for the future.
Other health problems common
Findings show that older people living with HIV are twice as likely to experience other long-term health problems alongside HIV, such as high blood pressure, kidney and liver problems and arthritis, with two thirds having treatment for these other conditions.
Worse off and money worries
Older people with HIV are financially worse off than other people of the same age without HIV. Older positive people are less likely to be working, less likely to have savings or pensions for their retirement and more likely to be on state benefits. Many have serious financial worries about the future. Older people with HIV are less likely to be homeowners and more likely to live in social or private rented housing. One said: “Since I was diagnosed in 1985 I regarded this as a death warrant and ceased to make any pension provisions.”
Good health information is top priority
Older people with HIV say having good quality health and treatment information is their highest priority, but three quarters fear needing health and social care in the future. As another person said: “I also fear that, in case I need to be cared for, the carer would be as ill-informed and prejudiced about HIV as the rest of the general public.”
Involving older people
The 50 Plus survey was designed with older people living with HIV, and it investigated the needs and concerns of 410 people, to help raise awareness of the issues that this group face and to collect evidence of the specific social care needs.
The 410 people surveyed are one in 25 of all the people aged 50 and over who are using HIV clinics in the UK – there are now well over 10,000 over 50s with HIV, with almost 1000 in the NW of England. Within the next ten years the number of over 50s with HIV will almost double.
While most over 50s living with HIV are gay men and white, there are numbers of heterosexual men and women including Africans, among other ethnic minority people.
Terrence Higgins Trust’s Head of Policy, Lisa Power, said: “As a result of effective treatment options, and our ageing population, the over 50s are now the fastest growing group of people with HIV in the UK, and there’s a long way to go regarding support for this group. Older people with HIV are living with high levels of uncertainty about their future health and social care and need substantially more support than their peers.
“The information we’ve gathered through ‘50 Plus’ is vital in giving us a better understanding of the unique problems that older people with HIV face on a daily basis in the UK. With this insight we can develop support services that are fully tailored to this group’s needs to ensure they have the same quality of life as their peers.”
Other key lessons
Other findings from the report show that:
- Older people with HIV are a rapidly growing and diverse group. The majority of this group are gay and bisexual men but there are also high numbers of African migrants and white heterosexuals. Some are long-term survivors, whilst others have been recently infected - one in five (21%) were diagnosed in the 1980s but the greatest number (41%) were diagnosed since 2000.
- Whilst older people with HIV think very well of their HIV clinicians, many report poor experiences in primary care, including discrimination, ignorance and a low standard of clinical treatment, and use their GPs and generalist healthcare services less than older people in general. Many also fear that social care services, care homes and sheltered housing might be HIV prejudiced and/or homophobic.
- Many report feeling isolated and would like more social contact and support. Most prefer to find this through HIV organisations.
- Most were open about their HIV status in key relationships and usually get positive reactions; however, telling others about having HIV is still seen as risky.
In response to these research findings, Terrence Higgins Trust, Age UK and The Joseph Rowntree Foundation made five calls for action:
- Improvements in healthcare to ensure access to good quality treatment in all settings and availability of better information to older people with HIV.
- Better employment support, money management courses and benefits advice.
- Action to deal with homophobia, HIV discrimination and ageism in all services, but especially in social housing, sheltered housing, care homes and health services (particularly primary care).
- Improved emotional support and opportunities for social contact, to prevent isolation.
- Greater cooperation and information sharing between organisations and services for older people, and those for people with HIV, to improve policy and practice.
Michelle Mitchell, Charity Director at Age UK, said: “This report clearly shows that the problems many of us face in later life, such as financial pressures, deteriorating health and isolation are all exacerbated by the impact of HIV on people’s lives. Now people are living far longer with HIV than ever before, we need to shift the focus on support services to improving quality of life. To achieve this, it is vital that we increase awareness and understanding of the needs of this group across a range of health, social care, housing and advice services.”
Terrence Higgins Trust, Age UK and other HIV organisations like George House Trust, will be using the findings to help development services.
50 Plus 4 page summary available now
The full 50 Plus report will be available from October 2010 at The Joseph Rowntree Foundation
Further data, including all statistical charts and the full literature review, will appear in the autumn in a special section of the THT website.
About the study
50 Plus research was conducted through an online and paper questionnaire and 40 in-depth interviews from a sample of adults aged 50 or over with HIV across the UK in 2009. The 50 Plus report is was based on the survey findings. The questionnaire was devised with the support of a Community Advisory Panel and interviews conducted by trained community researchers living with HIV. A literature review and visits to existing ageing and HIV work in the US were also undertaken. Age UK is the name for the merger of Age Concern and Help the Aged. The Joseph Rowntree Foundation (JRF) is one of largest social policy research and development charities in the UK. It aims to influence policy and practice by searching for evidence and demonstrating solutions to help overcome the causes of poverty, disadvantage and social evil.
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