The first generation of older people with HIV are facing poverty, loneliness and discrimination, according to a new report by Terrence Higgins Trust (THT).
Older people now represent 1 in 3 of all people living with HIV, but the social care, healthcare and welfare systems aren’t ready for this new and fast-growing ageing generation, according to the new report – Uncharted Territory – produced by Terrence Higgins Trust.
The groundbreaking report, released today has captured the reality of what it means to be part of the first generation of people to grow old with HIV.
The charity found that poverty, loneliness and social care are major concerns for older people living with HIV, and has warned of a social care ‘timebomb’ ahead.
♦ Nearly 6 out of 10 (58%) of people 50 and over living with HIV who were surveyed are living in poverty – double that seen in the general population. Meanwhile 84% of respondents were concerned about future financial plans.
♦ The survey of over 240 older people living with HIV also showed that 82% experienced moderate to high levels of loneliness – three times more than the general population of the same age.
♦ A quarter of respondents said they would have no one to help them if they ever needed support with daily tasks.
♦ Eight out of ten (82%) of people living with HIV aged over 50 are concerned about whether they will be able to access adequate social care in the future.
Ian Green, Chief Executive of Terrence Higgins Trust, said: “Advances in HIV treatment mean that people with HIV are living longer and we are now seeing the first generation of people growing old living with HIV. This is good news – but it also means we’re entering uncharted territory.
“Many of these individuals were diagnosed when HIV was considered fatal and never expected to live beyond a couple of years – as a result, they’re less likely to have savings or pensions, and many have become socially isolated. And since then thousands more have been diagnosed with the highly stigmatised condition.
“These statistics should be a wake-up call to governments. People aged 50 and over are now the fastest growing group of people living with HIV, and new diagnoses in older people continue to rise. The issues they face can no longer be ignored, as the challenges of poverty, loneliness and social care grow more acute.
“As it stands, our welfare, health and social care systems are simply not ready for this and we could see a timebomb in the years to come. We must ensure our GPs, our care homes and our communities are ready to support people with HIV to live well in later life, while facing the uncertainty of what lies ahead.”
One in three people seen for HIV care in 2015 were aged 50 and over, compared to one in five in 2011. New diagnoses among older people have nearly doubled in the last decade.
The report, co produced by people over 50 living with HIV who undertook elements of the research, highlights alarming stories of stigma and discrimination within care homes and other health and social care settings, warning that training for professionals must improve.
Ian Green continued: “We’ve heard stories of how older people with HIV searching for care homes have been turned away or treated in a way that reflects outdated awareness of HIV.
One lady living with HIV in a care home was encouraged to spend as much time as possible in her room to avoid contact with other residents. When she did leave her room she was only allowed to sit on one chair and the television remote was wiped down with antibacterial wipes after she’d used it.
This is shocking. A major shift in awareness and training for social care staff and support services on HIV and ageing is needed, to ensure they have the skills and knowledge to support the increasing numbers of people growing older with HIV.”
Kevin Burgess, 65, said: “I was diagnosed with HIV in 1991, before any treatment was available. People were told they had just a couple of years to live, so they spent their money at the time, thinking they didn’t have a future.
“Nobody realised we would still be alive today, so there’s been no consideration for us. Here we are 20 odd years later and we’re not prepared, and the leftover attitudes from the 1980s are very much still around.
“Going into a care home is a big fear for me. I used to live in sheltered housing and I couldn’t be open about my HIV status there, so I know what it’s like to have to lead a different life in your home. I wouldn’t want to have to do that again.”
Mark Budden, 56, who was diagnosed with HIV in 1997, added: “Living with HIV is like coming out of the closet again and again. Every time you disclose your HIV status to someone, you know to expect all the myths and you have to go into a long explanation about the facts.
“I’m gay, I’m a Christian, I’m getting older, and I’m living with HIV. These are integral parts of who I am, but none of these labels alone defines me.
“You just assume you’ll be looked after in old age in this country. It’s only when you have an elderly or ill relative that you realise that social care is not a given, you need to have savings as the government alone won’t look after you. If you’re isolated or financially struggling, as many people with HIV are, that is going to be a lot harder.”
George Rodgers, 56 years old, living with HIV since 1994, said: “Growing older with HIV, you wonder what’s going to happen long term? You can feel left on your own. Those of us who are living with HIV long term are having more health problems it seems.
“No-one actually knows how HIV interacts with other things. I’ve got diabetes as well as HIV and sometimes it’s hard to tell the difference between what symptoms are linked to what.”
About the report
THT launched a survey as part of the peer-led research project. A total of 246 completed surveys were analysed. The respondents lived across the UK – 10% in Scotland, 3% in Wales and the remaining 87% in England. Respondents ages ranged from 50 to 82 years old, with a median age of 55. Women made up 22% of respondents to the survey. The date of HIV diagnosis represented in the survey respondents range from 1982 – 2016 and age ranged from 18 to 74 years old at diagnosis . 32% were diagnosed with HIV before effective treatment was available in the UK in 1996.
One to one interviews and group workshops with individuals living with HIV aged 50 or over also took place and were conducted by the peer researchers.
In total, 307 people living with HIV aged 50 and over participated in this research.
To read the full findings in the Uncharted Territory report, click here: