Imagine AIDS 101 with a difference. The people gathered to learn about HIV, how it is spread, and how they can protect themselves and others are not young gay men. They are not adolescents. They are not intravenous drug users, people coming out of the prison system, or members of any of the other usually targeted groups. The audience this time consists of residents and staff of the Sirovich Senior Center of the Educational Alliance, located on Manhattan's Lower East Side. Presenter Joan Zimmerman is Program Director of Spectrum HIV/AIDS Services at the Park Slope Center for Mental Health, one of only two programs in the city for aging people with AIDS (PWAs), and this particular seminar is one of distressingly few education and prevention efforts aimed at older individuals.
Looking at the majority of safer sex workshops and street outreach programs, one would get the impression that only the young are at risk of contracting HIV. And it's true that most PWAs are young. But, according to the Centers for Disease Control and Prevention (CDC), over 10 percent of Americans who test positive for the virus are over the age of 50. In New York City, the number of newly diagnosed people who fall within that age group may be closer to 15 percent.
It's not just with regard to prevention that over-50s are left behind. Older people with HIV are often misdiagnosed and typically learn that they have the virus only later in the disease process. Medical treatment is more difficult, both because of the later diagnosis and factors related to age. Few practitioners are expert both in HIV and the health problems associated with aging. When it comes to social support services aimed at their particular needs, older PWAs are all but invisible. Our attitudes about AIDS and the aging reflect the beliefs we have built up about how people behave in their second half-century:
Old people are no longer interested in sex;
If they are interested, no one's interested in them;
If they do have sex, it's within a monogamous, heterosexual relationship;
They don't do drugs; and
If they ever did, it's so long ago it doesn't matter.
It isn't hard to see how these myths and misconceptions help erect barriers to effective HIV/AIDS prevention efforts, medical care, and social services for the late middle-aged and elderly. After all, if they're not doing anything risky, there's nothing to worry about, right? Unfortunately, older adults refuse to conform to the stereotypes.
On colorful posters and television spots, attractive, energetic young people testify to the coolness of condom use. Outreach workers go where kids and young adults congregate to warn about the dangers of unprotected sex and sharing needles. It's no surprise that the prevention message is not getting out to older people.
And it's not. A nationwide study published in 1994 found that Americans over 50 who engaged in risky behavior were only one-sixth as likely as their counterparts in their 20s to use condoms, and only one-fifth as likely to be tested for HIV. In the absence of prevention efforts aimed at them, many older people seemingly share the misconception that they are not at risk.
Some factors may even increase the risk of infection among this age group. Older men, both gay and straight, may have fewer sexual opportunities than younger men, and may be more likely to purchase the services of paid sex workers. One partner may view a long-term relationship as monogamous, unaware that the other partner is having unprotected sex with other people.
Older women are becoming infected at a higher rate than older men, and they may be particularly vulnerable to infection. No longer afraid of becoming pregnant, the post-menopausal woman who is uninformed of the dangers of HIV transmission may become more sexually active, with more partners, and may give up a decades-old habit of using condoms. Even her biology increases her risk: After menopause, the vaginal walls thin and vaginal lubrication decreases. Thus, the vaginal membranes are more likely to tear during intercourse, providing easier access for the virus.
The late middle-aged and elderly are seldom thought of as abusers of alcohol and other drugs, apparently on the theory that serious substance users don't live all that long. But the isolation that frequently accompanies old age, as families move away and friends and partners die, can lead to alcoholism and drug use that begins late in life. And the risks, especially those arising from impaired judgment, are just as real as they are for younger individuals.
Edwin Krales, Nutritionist/Outreach Coordinator at the Momentum AIDS Project and a member of the New York Association On HIV Over Fifty (NYAHOF), sees some improvement. The American Association of Retired Persons (AARP), for example, has recently produced a videotape about older Americans infected and affected by HIV, and Kathleen M. Nokes of NYAHOF edited HIV/AIDS and the Older Adult, published in 1996 by Taylor and Francis. But Krales points out that those running programs for senior citizens themselves often buy into the myths about older people as asexual and with no drug use in their past. He stresses the importance of overcoming denial on the part of both people involved in AIDS prevention and those providing services to the elderly. "We have to get out to the senior centers and do this work," Krales advises.
Diagnosis and Treatment
Ageism doesn't stop at the clinic door. Some of the early symptoms of HIV mimic age-related conditions, and many doctors apparently buy into the myth of elderly celibacy and sobriety. When an older patient complains of fatigue, weight loss, or failing memory, a doctor who does not recognize the risk of HIV infection may automatically attribute the symptoms to advancing years.
In a different version of "Don't ask, don't tell," doctors' failure to ask the right questions can be compounded by patients' reticence about divulging intimate details of their sex lives or drug histories to people, including doctors, half their age. This is particularly true of older gay men, according to James Masten, a social worker with Senior Action in a Gay Environment's (SAGE's) AIDS and the Elderly Program. Having come of age in the pre-Stonewall era, today's older gay men remember when they could lose not only their livelihood but even their freedom because of their sexuality. Small wonder that a generation that could once have been institutionalized just for being gay may want to remain closeted even to those charged with providing their health care.
Whatever the reasons, failure to communicate leads to failure to diagnose HIV in its early, and most treatable, stages. According to Spectrum's Joan Zimmerman, the older PWAs in her program typically did not learn of their HIV status until they became sick enough to be hospitalized. Only after they came down with an opportunistic infection that clearly suggested HIV were the lifestyle questions asked and the blood tests ordered. The time for early intervention was past.
Treatment of older PWAs can be complicated, even for the most dedicated and understanding health care professionals, because of difficulties in determining whether particular symptoms stem from HIV or age. Memory loss, for example, may indicate either AIDS-related dementia or Alzheimer's disease. The distinction is important: AIDS-related dementia can be reversed; Alzheimer's cannot.
In many ways, the effects of HIV and old age converge and aggravate each other, rather than conflict. Momentum's Krales offers loss of muscle mass as an example: People with AIDS often experience loss of weight and muscle mass. If they are able to put the weight back on, it is frequently in the form of fat, rather than muscle. Loss of muscle mass is also a natural consequence of aging. The situation can be further exacerbated by the decreased physical activity that typically accompanies aging. Thus, there are three factors conspiring to complicate the situation.
Older PWAs are also more likely than their younger counterparts to suffer from other chronic ailments, from high blood pressure to diabetes to atherosclerosis. The doctor treating the older person with AIDS must deal not only with the virus and other chronic problems, but with the potential side effects and drug interactions of the medications used to treat both the age- and HIV-related conditions. Myron Gold is a 56-year-old PWA who suffers from arthritis. His doctor admits that her treatment of his condition is made more difficult by the inability to determine how much of it is attributable to HIV, how much to age, and how much to AIDS medication.
HIV and geriatrics are separate medical specialties, and it is rare indeed to find a doctor who is knowledgeable in both. Some information is out there, however, and the best that most older PWAs can hope for is to find a doctor who is willing to become informed. Gold, who is very much an activist on behalf of PWAs in general -- and older PWAs in particular -- attends the conferences and reads the literature, calling his doctor's attention to material of interest.
Social and Support Services
Only Spectrum and SAGE offer social services specially geared to the needs of older New Yorkers with AIDS, even though here too, older people face the double-edged sword of being HIV-positive and getting older. (If they also happen to be women, people of color, or non-English-speaking, the difficulties multiply.)
Zimmerman, whose Spectrum organization offers mental health services to PWAs 49 years old and older from throughout New York City, cites disclosure issues as among the thorniest problems facing her clients. Adult children may be shocked to learn that their parents are sexually active or have used drugs. Spouses and other family members may reject the individual who has engaged in extramarital sex, especially when homosexuality is involved. The older person with AIDS may be treated as a pariah within his or her family, and denied the opportunity to visit and play with grandchildren.
Traditional senior citizens programs, aimed at alleviating the common problem of isolation among the elderly, are not set up with HIV-positive people in mind. The people running the programs may subscribe to the myths surrounding sexuality and drug use over 50. The AIDS stigma may be as strong or stronger among the elderly. Even practical matters may be of concern: People with HIV are particularly vulnerable to food-borne illnesses, and the scrupulous sanitation standards observed by meals programs for PWAs are seldom met by programs feeding the elderly or other populations.
The related problem of social isolation, common among older populations, is also prevalent among both Spectrum's and SAGE's clients. According to Masten, older gay men don't fare all that much better within the HIV community. In his experience, when an older man joins a support group composed mostly of younger men, he either inherits the role of group parent or becomes invisible. Either way, his issues are not dealt with by the group.
Krales's experience at Momentum is somewhat different. He estimates that about 10 percent of his agency's 1,500 clients are over 50, and finds the level of age integration very high. He attributes this to the fact that Momentum's program is offered at neighborhood sites throughout the city, and that the people who attend have more in common than just their HIV status.
There are other positives as well, raised by older PWAs themselves at an over-50 focus group sponsored recently by Momentum. Most of them have to do with experience: People who have been around longer are better able to deal with rejection and loss than younger people; they've been through it before. They are not as afraid that they are going to die tomorrow; tomorrow has come and gone, and they're still around. They were here at the beginning of the epidemic and can attest to the medical and social progress that has been made.
They also have a lot to offer, both to younger PWAs and to their peers. Although the focus group members stressed that they came to Momentum sites as consumers and not as service givers, they expressed a strong willingness to help and support the young people in the program. Some say they might even be willing to go into the senior centers and tackle denial head on.
This is, of course, far from the whole story of the impact of HIV/AIDS on older Americans. They become caregivers when their adult children become sick. They are bereaved when their children die. And then they become parents to their own grandchildren orphaned by the epidemic, many of the children themselves carrying the virus. And often there is little or nothing in the way of help or support available.
As Krales points out, HIV came into a society that does not love and respect its seniors. Most people have very little time or patience for the elderly. Our language contains few terms of endearment but many pejoratives referring to the elderly. And the lack of services for older people infected and affected by AIDS reflects this attitude.
We often hear how the face of AIDS is changing, with people of color, women, children, and heterosexuals now making up a greater proportion of the HIV community. What we seldom hear is that the face is also aging. People are living longer with the virus than ever before, and if new medications live up to even a fraction of their promise, the HIV-positive baby boomers will continue to swell the older AIDS population as well as demand services that meet their needs.