Care for seniors presents unique problems
By Frances McInnis
September 1, 2009
On a Friday afternoon in late August, fifty or so people sat at picnic tables and in folding chairs under the trees in Riverbank State Park. They ate fried chicken and arroz con gandules, a Puerto Rican rice dish. A few young girls jumped double-dutch, the rhythmic thwap of the ropes against the pavement punctuating the hip hop and salsa music emerging from a large boom-box. It was a day to relax for the clients and staff of Iris House, an AIDS Service Center with offices in East and Central Harlem.
Casilda Rivera in Riverbank State Park. Photo Credit: Frances McInnis
Casilda Rivera sat on a bench, her curly gray-blond hair bouncing as she giggled with her granddaughter. At 58, Rivera was one of the older picnickers. She said she contracted HIV from a long-term boyfriend, who she believed was faithful. That is, until she fell ill: “I had double pneumonia, and the doctor said that all the tests they took came out negative. The only one left was the HIV test. I had it. They told me I only had two weeks to live.” That was seventeen years ago.
Americans infected with HIV are living into old age, thanks to highly active antiretroviral therapy (HAART), a treatment developed in the mid-1990s that fights the virus by combining multiple virus-combating drugs. According to the New York City Department of Health and Mental Hygiene, 36 percent of New Yorkers living with HIV or AIDS are over 50, and epidemiologists say that proportion could exceed 50 percent in the next decade. In East Harlem, where infection rates are among the highest in New York, more than 1,000 people over 50 are HIV-positive. Yet support services and prevention programs are largely aimed at younger people.
“You give these people antiretrovirals. Save their lives. Then what?” asked Dr. Stephen Karpiak in an interview last week. Karpiak researches HIV in the elderly, and was the principal researcher in a 2006 study of 1,000 HIV-positive adults over 50, undertaken at the Aids Community Research Initiative of America in midtown Manhattan. The study suggested that HIV-positive seniors are particularly vulnerable to depression and loneliness because aging and the stigma associated with HIV are both isolating forces. However, Karpiak said, health workers and caregivers often mistake symptoms of depression — agitation, irritability, achiness, sadness, fatigue — as a normal part of aging, or an expected reaction to living with HIV. “The standard of care isn’t working,” he said.
When Rivera suffered depression in 2000, she sought the help of a therapist and a support group. She still commutes to Harlem from her home on the Upper West Side to participate in the Divas over 50, a group run by Dr. Frances Melendez, Iris House’s Director of Behavioral Health. Twelve to 15 women usually attend the Wednesday afternoon meetings; the oldest is 80, and the youngest (a “diva in training”) is 48. Melendez said the group is fairly evenly split between women who contracted the virus through risky sexual behavior or intravenous drug use, and women who, like Rivera, were infected by an unfaithful partner. The women share their feelings and advice on topics like menopause, depression, treatment options, grandparenting, sexuality and dating.
Yves Gebhardt, 57, said he would like to see more programs that, like the Divas, cater to seniors. The East Harlem resident said that he has found good access to care and medication in New York, but a lack of support services and education campaigns for the elderly. “Where would an older person — say a 60-year-old go to get tested?” he asked. “Would you expect them to go to a CBO [Community Based Organization] filled with young people?”
Testing and prevention need to become priorities, say healthcare and community workers who deal with HIV-positive seniors. Although the “graying” of HIV due to HAART accounts for the majority of infected seniors, diagnoses among people over 50 are increasing – they now account for 17 percent of new diagnoses in East Harlem, compared to just 12 percent in 2001, according to the New York City Department of Health and Mental Hygiene.
Heterosexual intercourse is the most common method of transmission among seniors, according to Shaw and Melendez. “People don’t think about older people having sex. I don’t want to think about my grandmother having sex. But they are,” said Melendez. She adds that that since Viagra and other erectile dysfunction remedies are now readily available, more seniors are sexually active than ever before.
But many of these sexually active seniors are not protecting themselves. Condom use is lower among seniors because post-menopausal women do not need birth control, according to a report by The City of New York Department of Aging; however, these women’s thinner and drier vaginal walls put them at a higher risk for transmission.
Brenda Lee Curry, 64, said seniors are not using condoms because they feel uncomfortable speaking frankly about sex. “For older people, it’s not the norm to talk about protection and testing. They don’t ask questions, they just go to bed. That’s the way we were raised, not to ask questions.”
She said many seniors do not realize they are at risk, having never received sex education. Curry has seen AIDS education improve dramatically since her diagnosis in 1985, but says she is still frustrated by a lack of messages aimed at seniors: “Nothing – no billboards, no bus stops, no subways – show an ad with a senior’s face on it.”
Gebhardt agreed that public service announcements neglect seniors, saying that it simply never occurred to him that older people got AIDS. He was not tested for the virus until 2002, when he was diagnosed with Hodgkin’s Lymphoma, a form of cancer sometimes associated with HIV. Gebhardt said he believes he contracted the virus from a sexual encounter in 1994 and lived eight years completely unaware he was HIV-positive.
“I never even thought of the possibility of having HIV,” he said. “I thought it was a young people thing.”
