Many older people living with HIV worry about poverty, loneliness and social care
A peer-led research project on the experiences and needs of people living with HIV over the age of 50 has recently been published by Terrence Higgins Trust. Many of those taking part were living below the poverty line and were socially isolated. Many participants had anxieties about their future health, independence and social care.
The research found a divide between the experiences of people in their fifties and those in their late sixties and seventies. People of working age, between 50 and 60, tended to express much more anxiety about employment and benefits. For example, they were concerned about being able to find another job if their current one no longer suited them, or they were worried about losing the social security benefits they currently had.
People in this age group had many unanswered questions about what the future would hold in terms of their health, relationships, finances and social care needs.
In contrast, participants over the age of 65 expressed fewer concerns. The older a person living with HIV got, the happier they felt, the better their wellbeing, and the lower their levels of HIV self-stigma.
A third of survey respondents were socially isolated and four-fifths experienced loneliness. Wellbeing decreased with increased social isolation. A number of participants talked about it being hard to maintain social relationships because of financial problems.
Very few participants had been able to make financial plans to fund their future social care needs. Some had seen the impact of poor quality care on their own parents and were apprehensive about the care they might themselves receive. The financial issues were combined with concerns about social care workers’ knowledge of HIV and discriminatory attitudes. The research highlighted several examples of extremely poor practice.
Almost all survey respondents had at least one health condition in addition to HIV and over a quarter had five or more conditions. They had to see many different healthcare professionals and rarely found that their healthcare was ‘joined up’.
People over the age of 50 now represent one third of all people living with HIV, but the social care, healthcare and welfare systems aren’t ready for this growing cohort, says Terrence Higgins Trust. They describe the situation as a ‘social care time bomb’.
Few HIV clinics offer dedicated services for older people living with HIV
The best ways for HIV clinical services to meet the medical needs of people living with HIV over the age of 50 has been the subject of another study published this week. A survey of 102 HIV clinics in the UK tried to find out how they care for their older patients.
Five of the HIV treatment centres already had a clinician with a specialist interest in HIV and ageing. Just two had dedicated ageing services. One hospital offers a monthly clinic jointly run by HIV and geriatric specialist doctors. The second hospital runs a weekly clinic operated by an HIV doctor and an HIV clinical nurse specialist with an interest in ageing.
A focus of these services is making sure that people’s health is comprehensively assessed, all the necessary tests are done, and health problems that are identified are dealt with. Both services were in hospitals with a large number of people living with HIV.
Two-thirds of HIV treatment centres did not believe there was a need for dedicated ageing services. This was often because they said they did not have very many older patients – but this is likely to change in future years. Other centres said that GPs already provided high-quality care for conditions related to ageing or that dealing with ageing issues should form a routine part of HIV care.
But most doctors who responded said they’d welcome more guidelines on how to assess the health of their older patients, on specific issues about HIV treatment for older people, and about the best ways to communicate with doctors in other areas of medicine.
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