Fifty-plus and face to face with Aids

Despite its links to sex and drugs, HIV does not discriminate by age. R osalind Powell on an older response to a young disease

Aids is commonly believed to be the territory of the young, the stuff of early excesses and tragically premature deaths.Yet Reg Martin, 60, was diagnosed HIV positive four years ago. He is just one of 1,000 British people aged over 50 who are HIV positive; 11 per cent of people with Aids fall into this age range.

Older people have been at best misunderstood, at worst ignored: sex is no longer their domain, is the assumption; they are therefore not at risk from infection. Those who are infected often live in communities unsympathetic to their illness, where support is geared towards a younger generation. Raised in a climate in which sex and sexuality have never been freely discussed, educating older people about Aids is often slow and difficult.

Age Concern London explored these issues last year in a report on HIV, Aids and older people titled "A Crisis of Silence", by Tara Kaufmann. "I was of the same opinion as everybody else," she explains, "that older people did not have sex very often and, when they did, it was in a long-term, monogamous relationship. But common sense suggests otherwise: older people get widowed and divorced and are just as likely to start new relationships as the rest of us."

They can also become infected. Elizabeth (not her real name), is a 58-year-old Ugandan woman living in Britain who has been HIV positive for five years. The mother of five adult children, she has had two relationships with English men since her divorce in 1983 and believes she contracted the virus from her last boyfriend, who disappeared without a trace as soon as he discovered she was positive. "If you're an older woman, people don't expect you to have a boyfriend," she explains. "They exp ect you to just sit in the house and sleep. But I still needed to enjoy myself, just like anybody else. Perhaps before I would have been more careful as I wouldn't have wanted to become pregnant. But now I could be free - if it wasn't for this virus."

Like many others, Elizabeth assumed she was immune from a disease she believed only affected gay men. She has kept her illness a secret, telling only her children and the other HIV positive women at her weekly support group, Body Positive. "I'm very proud of my age, and I don't fear death. But I think people might be less sympathetic to me if they knew. They might think that because I'm older I should have known better."

Elizabeth's sense of isolation and fear of rejection was shared by Joe Humble, a 70-year-old Anglican clergyman who contracted HIV through a gay relationship 10 years ago. Based with a mission in Buenos Aires at the time, Joe decided to tell no one. "Although I had some very good friends, I didn't tell them: you simply don't know how people are going to react. I thought I might end up without any friends at all." It was only when he came back to England and settled in London that he felt able to be openabout being HIV positive. "I knew nobody, so I really started a new life,''

he explains. "I've created a new identity for myself, which most older people are not able to do."

Faced with the added stigma of being a priest, Joe decided to tell his church last year - and gained its support. His sense of relief is twofold: not only can he be open about his illness, but also his sexuality: "The blessing has been that HIV has forced me to come out - it's a truth that makes you free. I now feel freer than I have ever felt in my life, because I'm not having to hide anything or pretend to be anything I'm not."

Not everybody can be as open as Joe, or hope to win the same support. From the very onset of the illness, the elderly may be confronted with par- ticular practical difficulties. "There's a real problem in getting a proper diagnosis and appropriate medical care because older people tend to assume it's not an issue for them," explains Tara Kaufmann. "They also often exhibit symptoms of age-related illnesses that we associate with older people anyway, such as dementia."

Incorrect diagnosis may also be compounded by ignorance within the medical profession; a recent survey in Birmingham showed that 50 per cent of the doctors and nurses questioned did not think HIV was relevant to their older patients.

"There's very little information about people over 50, so once they become ill, they go into the category of pensioners and geriatrics," says Reg Martin, who found his own doctor's lack of experience a problem. "They didn't know how to handle me, so theytreated me as if I had just come out of hospital and needed to recuperate."

This attitude is not confined to those with the virus. Sixty-six-year-old Betty Feldman experienced the same treatment from the GP treating her son Michael, who died from Aids-related illnesses three and a half years ago. "He completely fobbed me off," she says. "It is a protective shield that people put around you, and I think it starts when you reach a certain landmark - such as becoming a grand- parent. I could have very easily been ignored, but I demanded knowledge."

Since her son's death, she has become a campaigner for greater Aids awareness and established a charity for Aids dementia. By refusing to settle down into grandmotherly activities she often comes up against mixed reactions. "I have various labels - the grieving mother, the Jewish big mouth, the campaigner and the charity label. But I also have the `Who the hell does she think she is?' label as people think I'm too old to get into all of that. I think people see me as a bit of a freak. "

It is a prejudice that overlooks the important role older people could play in caring for those with Aids. "Older people are productive," says Betty. "They can do things they've never had time for before." She has found that the older volunteers at the London Lighthouse, for example, have more resilience than the younger ones. "They have a great befriending role, as they're facing imminent death - as do the Aids patients. Young people feel embarrassed talking about death just as older ones feel embarrassed talking about sex. But an older person has probably seen death in many forms over the years."

Kingsley Slocombe-Wood, an active 70-year-old who cares for his 30-year-old companion who has full-blown Aids, feels that his age has worked to his advantage. "Without being morbid, I'd say I was in the last stage of my life cycle, so the idea of death doesn't worry me so much as when I was younger. The older you are, the more bereavements you have, so the more you get used to it."

Kingsley combines caring for his companion with his work as chairperson of the Libertines, a support group for older gay men and lesbians that meets fortnightly under the umbrella of Age Concern Lewisham. However, his attempts to introduce HIV and Aids into the group's discussions have not been met with enthusiasm.

Kingsley attributes this to the fact that many of the group members do not identify themselves as gay. With the denial of sexuality comes a denial of potential risk. "People of my generation were brought up in a secret world. There were very few clubs, and they were mainly underground," he explains. "We never identified ourselves as being gay people, we were just doing our own thing, quietly and without talking about it. So a lot of older people aren't fully integrated as they still have that backgroundof secrecy." He believes that it is even more difficult to talk to older heterosexuals who still believe it's a "gay disease".

The image and language used to raise awareness of Aids is another obstacle. "There is this trendy, glamorous side to Aids which fosters the idea that we don't want old people mucking it up, shuffling in and looking unsexy," says Tara Kaufmann.

"All the material being written now is useless," says Reg Martin, adding angrily, "It's street talk and medical jargon. The younger ones may be able to understand it - but older people can't." Reg has written his own information leaflet, produced throughhis work with the group AGE 50+, an advice and support network set up by Age Concern Hammersmith and Fulham to deal specifically with older people, HIV and Aids. It uses carefully selected words such as "geromino" and "French letter" to which, he hopes,the older generation will relate. The Libertines have produced similar leaflets for both older gay and heterosexual people.

Some of the larger Aids organisations are beginning to realise that older people need to be part of their campaign work. In October London Lighthouse produced a poster targeted at the elderly. Across the picture of a family group - parents with their younger son - the caption reads "When Martin told them he had Aids his family couldn't believe it. After all, he is 64".

AGE 50+ can be contacted on 071-386 9085.