Older HIV patients require special considerations
Older people with HIV offer their advice
It’s difficult being an older person in America, where the culture is permeated with messages of youth, beauty, and vitality. Having an additional burden of a socially unacceptable disease like HIV can further stigmatize and alienate an older person, according to HIV experts and people who are infected with the virus.
Society can be hard on people with common frailties, Bill Rydwels has found. Rydwels, 66, who lives in Chicago and was diagnosed with HIV in 1985, is treated with antiretroviral drug therapy. The gastrointestinal side effects from his drugs, compounded by the aging process, often cause him considerable discomfort and embarrassment.
"I’ve walked into stores and said, Please may I use your bathroom?’ and they say, I’m sorry, but the toilet is only for employees,’ so you end up messing yourself," Rydwels says.
These types of discomforts can wear down people’s self-esteem and erode their independence, but providers may see these as minor problems.
"The medical community seems to say, Well, look, it may cause those side effects, but look how well you’re doing right now,’ and you want to say, Gee, thanks, but you should be in my position and have the embarrassments I have when I can’t control everything all the time,’" Rydwels says.
Providers who have older patients with HIV need to consider a wide variety of health and psychosocial issues, some of which overlap with the problems experienced by their younger patients and others of which are unique to that population.
Rydwels and others familiar with what it means to have HIV over age 50 offer these suggestions:
• Encourage patients to find support to prevent their isolation.
Older people with HIV often become isolated, partly from a fear of disclosing their disease to family members or friends, says Nathan L. Linsk, PhD, a principal investigator for the Midwest AIDS Training & Education Center in Chicago.
"They might not find other people their age who have HIV, and many HIV services are not equipped to deal with the special needs of older people, so they become more isolated," Linsk says.
Jane Fowler, 64, has become very active and vocal in advocating for services and support for older people with HIV in recent years, appearing on the covers of magazines and being quoted in major newspapers about her HIV status. But Fowler admits that she wasn’t always this open. After she confirmed her HIV diagnosis, she only shared her problem with very close family and friends, and for four years she retreated from her former life. She quit her journalism career and spent her time avoiding potentially painful social circumstances. Fowler even drove 90 minutes out of town to see movies so she wouldn’t see anybody she knew.
While Fowler eventually broke through her self-imposed shame and isolation, many seniors do not.
"When you can’t share this with people in your lives, you end up isolated and lacking support," says Erica Aeed TeKampe, MSW, case management supervisor for the HIV Care Directions program of the Area Agency on Aging, Region One, in Phoenix.
TeKampe recalls a particularly poignant case of a couple in their 70s who discovered when the husband was having some unrelated health problems that he also was infected with HIV. The wife was not infected. "They’d just moved to Arizona to be near their family, but staying there after the diagnosis ended up being too much for them," she says.
The man heard his siblings and nieces and nephews discuss AIDS in a very derogatory and judgmental fashion, and he decided he couldn’t share his problem with them.
"The husband became very isolated and really shut himself off from his wife, and that was difficult for her because she needed someone to talk to, and she couldn’t talk to her family," TeKampe says. "She needed the support of social service providers, but she didn’t want to go that far, because what if someone in her family saw her car at an AIDS agency or if they saw a brochure in her house?"
As far as he knows, they never found a solution to their social isolation. Instead, they moved away from their family and from the retirement life they had planned.
• Differentiate between geriatric and HIV symptoms, while treating both.
When Fowler began to experience hearing loss, she wasn’t certain if it was due to aging or HIV. Her physician reassured her that this was a normal part of growing older.
Older HIV patients often have multiple health problems, such as heart conditions, high blood pressure, and diabetes, says Mary Ann Malone, CSW, case manager of adult AIDS clients at Mt. Sinai Hospital in New York.
"All of these things combined make them somewhat different from someone who is younger and doesn’t have the problems associated with growing older," Malone says.
Be aware of drug interactions
Clinicians need to be aware that their older HIV patients may be on multiple medications that could be contraindicated with their antiretroviral drugs. For example, Pfizer recently published a warning that the impotence drug Viagra should not be combined with the protease inhibitor ritonavir because the protease inhibitor can boost the maximum levels of Viagra in the body to dangerous levels. Saquinavir also caused Viagra levels to rise, although to lower levels.
Some of the side effects from antiretroviral drugs, such as increased cholesterol levels and hyperglycemia, are already a problem in older people.
"The HIV cocktails may cause more rapid progression to other conditions," Rydwels says. "I’m dealing with diabetes, which was not a condition I had before I took protease inhibitors."
Fowler struggles with lipodystrophy as a side effect of her HIV drug regimen. She says the midsection roll of fat is hard to deal with because when she looks in the mirror, she’s reminded of how she looked 35 years ago while pregnant with her son.
Rydwels says he’s encouraged that health care professionals are beginning to recognize the need for clinicians who specialize in both geriatrics and HIV. Rydwels says he knows a nurse who works with older patients and now is returning to graduate school to study HIV. And he has a therapist who is studying both HIV and aging.
• Acknowledge the person behind the disease.
Fowler offers a good example of how not to handle the first consultation with an HIV-positive person, older or not: "The first doctor I went to was a male, and I would be his second female HIV patient," she recalls. "The first thing he did was draw a time line showing me how the infection progresses and how in 10 years of infection you’re dead, meaning I would have five more years to live."
She never returned to that physician’s office, although he was considered one of the leading HIV specialists at the time.
Clinicians should be aware that confidentiality, while important for anyone with HIV, is an even bigger issue for older people with the disease, TeKampe says.
"There’s even more stigma related to being positive within their own generation," she explains. "And it’s such an oddity that they have much bigger issues of privacy and keeping it a secret."
They might not want to tell their children, for fear of what their offspring will think of them. "They’ve tried to be role models all their lives," Malone says.
Fowler told her adult son about her diagnosis soon after she learned the bad news, and she says his support has been extremely important to her acceptance of the disease. She also told her parents, and while they were supportive and nonjudgmental, it has been difficult news for them to bear. Her father has since died, and her 89-year-old mother now lives in a nursing home.
"My mother teared up," Fowler says. "Her greatest fear in these last eight years has been that I will get sick and die before she does, and she will have to witness the death of her only child."
Probably the most important emotional service a clinician can provide to an older HIV patient is being open and willing to listen, Rydwels says.
"Just recognize that this is a human being who operates like all other human beings in this world and has needs, and some of those needs are for attention, love, support, and sexuality," Rydwels says. "And approach that individual from that point."