Many older people with HIV say they are stigmatised because of their age, leaving them feeling isolated and afraid, a study suggests.
Researchers at Keele University say HIV is still widely seen as a disease of young people.
They say older women, in particular, fear they will be seen as “undignified” or “sexually irresponsible”.
Many in the study also expressed fears over the uncertain impact of the disease as they moved into old age.
Thirty years on from the discovery of the Aids virus, the public health warnings that followed, including the “tombstone” adverts, still have a powerful resonance for those who saw them.
They helped to shape perceptions of a disease seen then as a death sentence.
Now advances in treatment mean people with HIV can have near-normal life-expectancy.
And that has had a huge impact on the types of patient needing treatment.
Dr David Asboe, a consultant in HIV medicine at Chelsea and Westminster hospital, recalls the desperate outlook for patients he looked after 20 years ago – usually young gay men.
“We knew that once patients had an Aids diagnosis that would be uniformly fatal. The average life expectancy was approximately two years,” he says.
“But in the mid-1990s we had effective treatment and suddenly it changed very quickly, there really was this Lazarus effect.”
Today, half the people Dr Asboe sees are aged over 50. Some are in their mid-80s. They include gay men and heterosexual men and women. Some were infected in the UK, some overseas.
A significant proportion, he says, acquired HIV recently. He says there seems to be a myth that as people get older they might somehow be protected. That, he emphasises, is not true.
Dr Asboe, who is also chairman of the British HIV association, has been involved with the HIV and Later Life (Hall) study based at Keele University, which has looked at the social and psychological impact of the virus for people over 50.
This is a growing cohort. According to the Health Protection Agency, in 2011 more than one in five adults accessing HIV care in the UK were over 50. In 2002 it was one in nine.
The researchers used focus groups, surveys and life-history interviews with 76 older people in the London area living with the virus.
Dr Dana Rosenfeld, who led the project, says there was an “immense knowledge gap” in this field. She says it has revealed a sense of anxiety about how they may be perceived.
“A lot of the people to whom we spoke, particularly but not exclusively the women, spoke of their sense that they would be seen as undignified, that having HIV in later life would be read as sexually irresponsible.
“And there was a real sense that particularly in later life HIV status would be read in very stigmatised ways.”
That was a worry for 63-year-old Adrienne Steed from Blackburn, who was diagnosed with HIV 11 years ago, infected by a long-term partner.
He had died two years previously of liver cancer. She did not know he had had HIV so when she started having symptoms it did not occur to her – or to the doctors she saw – that she could be carrying the infection.
“It was a terrible shock to me and something I remember to this day. I had no idea I was HIV-positive. It was the last thing on my mind,” she says.
It took four years until she felt able to tell her son.
“During that time I experienced what it’s like to live as an invisible woman with this big secret that you couldn’t tell anybody.
“It was a horrible time. It’s the stigma. You feel ashamed of yourself even though you’ve got nothing to be ashamed of.
“People don’t realise you can contract it from a loving partner who might not even know that they have it themselves.”
Now she helps others through a blog and local support group, so – as she puts it – they don’t have to live with what can feel like a “dirty secret”.
“Once they’ve spoken to me it normalises it a bit more,” she says.
“They think, ‘Oh she doesn’t look too bad. She’s nearly 64, she’s active, she’s still laughing. There must be some hope there.’”
The Hall study found the experience of ageing with HIV was heavily influenced by community.
Older gay men were more likely to know other people with the virus, and to know more about support organisations.
Black African heterosexual men and women had also lived with the spectre of HIV for years, but were less likely than gay men to disclose their status to others, the study said.
Many white heterosexuals, meanwhile, felt they were a “minority within a minority”, and that their family and friends would be shocked by their HIV status.
Most of those who took part in the survey felt lucky to have survived into later life, but many were troubled by uncertainty over the physical impact of the virus or side-effects of treatment for this – the first generation to age with HIV.