Since that 1998 review, several more books have been published and three academic journals have devoted special issues to the topic of HIV and older adults: Research on Aging (November 1998), Journal of AIDS (June 2003) and AIDS (January 2004). Many of the articles in these journals are scientific studies of older adults, but they still consist of case studies, secondary data analyses (using previously collected data to explore a research question that is separate from the original study's goals), or studies that focus on specific groups of older adults (veterans or white gay men, for example).
Although fewer people are being diagnosed with AIDS in the United States and deaths continue to decline, the number of older adults living with HIV/AIDS is larger than ever. Between 1991 and 1996, the number of new AIDS diagnoses rose twice as fast in people over 50 than in those younger than 50. And although the rate slowed from 1996-2000, increases in the older population continued despite great improvements in treatment for HIV that became widely used beginning in 1996-1997. According to the Centers for Disease Control and Prevention (CDC), there are more than 78,000 people age 50 years or older living with AIDS in the United States. The most accurate statistics about these older adults are based on an AIDS diagnosis. Some states don't include HIV statistics in their reporting, and, among those that do, the incidence of HIV in older adults may be under reported. New York State began including HIV statistics in 2000. The most recent statistics show that 25% (about 22,000 people) of all people living with HIV and AIDS in New York City are age 50 or older.
You might wonder why this issue of ACRIA Update about "older adults" includes people in their 50s. For practical reasons early in the HIV epidemic, the CDC defined older adults as anyone 50 years or older. People over 50 often have different experiences and complications than younger people. Over the years, people have continued to use this definition of "50" because it has been useful when scientists study age-related differences between younger and older adults. The information about aging with HIV/AIDS can be confusing, especially when studies report conflicting results. There are many questions that need answers. People have begun to realize that older adults face issues about their health and well-being that we had never considered before.
One of the largest problems all older adults face is ageism -- discrimination based on negative attitudes toward aging and older people. Until we correct ageist assumptions and attitudes about older adults, there will be limits to what we know about how HIV affects their lives. Many healthcare providers don't consider older adults to be at risk for HIV. Thus, relatively few prevention efforts have focused on older adults. One common, but incorrect, assumption is that older adults aren't sexually active or, if they are, they know how to avoid HIV infection. Older adults and their healthcare providers usually avoid discussions of sexual behaviors and substance use. Older adults may be unwilling to discuss risky behaviors because of the stigma that society attaches to these behaviors. Others may be in monogamous relationships with a partner who engages in risky behavior without their knowledge. This lack of communication is particularly dangerous for older adults since HIV-related illnesses can be difficult to distinguish from typical age-related health problems. As people age, various illnesses become more common. Alzheimer's disease, arthritis, diabetes, breast or prostate cancer, high blood pressure, and vision / hearing loss affect millions of older adults each year, and many of these diseases share common symptoms with HIV/AIDS. The lack of discussion about risk factors and HIV-related symptoms can lead to misdiagnosis or a delayed diagnosis of HIV and a potentially critical lag in beginning anti-HIV treatment.
Although specific treatment guidelines have been created for children, pregnant women, and other patient populations, no specific recommendations exist for older adults. This presents a challenge for physicians, particularly when treating older patients with other age-related illnesses. Beginning anti-HIV treatment requires a complex and intensive regimen of at least three medications, in addition to those that people are already taking for other illnesses. This is often at odds with a common process of slowly adding medications to reduce side effects in older patients. In spite of the need to understand how HAART (Highly Active AntiRetroviral Therapy) will affect the growing number of older adults living with HIV, older adults have often been ignored in clinical research. Since older adults are rarely included in controlled medication trials, little is known about age-specific drug actions, possibly dangerous interactions with other medications, or side effects. Older adults often have medical problems (for example, high cholesterol, triglyceride, or blood sugar levels, and/or liver or kidney disease) that disqualify them from participating in many trials. Because the number of older adults with HIV is growing, clinical trials should either be modified to include older adults, or separate studies specifically designed for older adults should be designed.
HIV-positive people are now living longer and healthier lives than before the widespread use of HAART. In the United States, HIV is becoming more like a chronic illness than the acute crisis it once was. The incidence of opportunistic infections has dropped dramatically, but now other physical and mental illnesses have increased as people live longer. Research efforts during the first two decades of the HIV epidemic mostly focused on keeping people alive and relatively healthy. Given the success of HAART, it is now important for researchers to focus on the quality of life of people living with HIV. There's more to life than undetectable viral load and high CD4 counts. Much of the HIV/AIDS literature is based on a medical, or disease, model of wellness. In other words, if a person doesn't have a particular set of symptoms, then they aren't sick. In some cases, this is the best we can expect from a healthcare system, especially one that is stretched thin by budget cuts, escalating insurance costs, and increasing numbers of patients with multiple and complicated illnesses. However, biological markers don't tell the whole story, particularly in research studies designed to understand the quality of life of older HIV-positive adults.
In the past several years, more attention has been paid to mental health problems among people with HIV. Many of these studies focus on depression. Depression is a common psychological illness, both in HIV-positive people and older adults, but that doesn't mean people have to live with it. Older HIV-positive adults may be more likely to have more symptoms of depression than younger people with HIV and are significantly more likely to be depressed than people their own age who are HIV-negative. Estimates of depression among people living with HIV range from 15% - 60%, depending on what definition is used.
One of the problems in describing the rate of depression among older adults with HIV is that researchers use a variety of measures to identify depression. Some prefer to use a clinical diagnosis of depression (someone who receives a clinical diagnosis has a set of symptoms that don't go away over time and interfere with their daily life), and their results reflect the lowest percentages of depressed individuals. But, just because a person isn't clinically depressed, it doesn't mean that everything's coming up roses. Many HIV-positive people might not meet the criteria for a clinical diagnosis but have several symptoms of depression that can have a negative impact on their lives. This is one case where the glass being half-full isn't so good!
Researchers who have used other measures of depression find evidence of depression among the majority of the people in their studies. A study of 113 HIV-positive adults (age 47-69), published in the journal Psychiatric Services in 2000, found that 25% of the study participants (the majority of whom were white men) scored in the moderate to severe range on the Beck Depression Inventory, a popular depression scale. One problem with this scale is that it was designed to assess the level of depression among people who had already received a diagnosis of "clinical" depression. In 1996, a study published in the Journal of Psychosomatic Research of 120 low-income, mostly minority people living with HIV found that 53% of the participants scored higher than the cutoff score on the Center for Epidemiological Studies Depression scale (CES-D), representing significant depression. This measure wasn't designed to diagnose clinical depression. Instead it has been used in hundreds of studies to describe the prevalence of depression symptoms in diverse groups. Some people criticize this measure because some of the items focus on physical symptoms of depression that may be caused by other illnesses or drug side effects instead of depression itself.
Regardless of the measure used, research has shown that older adults with HIV are more likely to experience symptoms of depression than younger HIV-positive people and older HIV-negative adults. Older HIV-positive adults who are depressed are more likely to have financial problems, have fewer people to turn to for support, lack HIV-related information, live alone, have thoughts of suicide, and experience greater levels of stigma related to HIV and aging than older adults who aren't depressed. Depression may interfere with adherence to treatment, health care visits, participation in social activities, and personal relationships.
It can be difficult for doctors to diagnose depression because many of the symptoms are similar to common HIV symptoms, coinfection with hepatitis C, or drug side effects. The most common symptoms of depression include fatigue, poor appetite, weight loss, loss of sex drive, and sleep difficulties. These symptoms sound a lot like a list of medication side effects and are similar to symptoms of HIV itself. Healthcare professionals and older adults with HIV need to pay attention to these symptoms, especially if they occur with other warning signs of depression. These can include emotional symptoms (mood swings, having 'the blues' or feeling so sad that nothing can cheer you up) and mental symptoms (sudden or increased forgetfulness, difficulty keeping track of appointments).
Social support is the emotional and practical assistance that family members and friends provide for people living with HIV. Social support is an important resource for everyone, but it becomes particularly important for people as they age. Older adults living with a chronic illness may be even more acutely aware of the beneficial role that social support can play in adapting to the stress related to their changing life circumstances. Social support boosts psychological well-being and can reduce the number and intensity of physical symptoms for people with HIV.
Unfortunately, several recent studies of older adults living with HIV have found that these individuals may be at risk because they don't get the support they need from family members and friends. Several studies of HIV-positive adults over age 50 have found that many don't receive adequate emotional support or enough help with daily chores. Two of these studies specifically asked participants if they received the emotional and practical support they needed and found that 42% - 57% of these older adults don't receive enough emotional support and 27% - 79% don't receive all the practical assistance with daily chores that they need.
Older HIV-positive adults who don't receive adequate support may feel more isolated and stigmatized than those who get the support they need. They may also have difficulty managing their illness (adherence to medications and scheduling health care visits, for instance). Anxiety, depression and thoughts of suicide are higher among people who lack social support resources. People must rely on formal healthcare providers to get the support they need to cope with HIV. However, HIV-positive adults who don't receive support from family and friends were less likely to use formal healthcare services. This can be a real problem for the large numbers of HIV-positive seniors who live alone and are isolated from family and friends.
Several barriers may reduce the amount of support that family and friends can provide. One such barrier may be an individual's reluctance to disclose his or her HIV status. On average, older adults are less likely to disclose than younger people. Friends and family may not be aware of the older adult's need for assistance because of the stigma and fear associated with HIV/AIDS. Older adults may be at greater risk for negative attitudes from family and friends if they do disclose. Another barrier is the size of many older HIV-positive adults' informal social networks. These older adults may have smaller social networks because they don't keep in touch with family and friends, while others may be unable to maintain connections because loved ones have moved away, died, or are too ill to keep in touch regularly.
Much of this discussion has focused on the challenges that older adults with HIV face. Are there any benefits to being an older HIV-positive adult? As more older adults become infected with HIV and others who were infected when they were younger live longer, healthcare professionals need to be aware that many older adults living with HIV feel that their life experiences have provided them with skills to cope with their illness better than younger adults.
Researchers from Columbia University School of Public Health found that older adults felt that there were some advantages to being older. The sample included 45 men and 18 women living with HIV, between ages 50 and 68. Many participants felt that older adults had more skills because they had been through other challenges in the past and had learned to recognize their strengths and limits. Older people may also feel less cheated because they have accomplished many of the goals in their lives, compared to people who are diagnosed at a younger age. Another potential benefit is that older adults tend to respect their health and their lives more than younger people. The participants in this study said that they were more likely to stay on top of their medications and listen to their doctors than younger adults. They were also less likely to take risks and were motivated to change behaviors to improve their health. Several people also thought that they were more patient and content with their lives than younger adults. They believed that younger people were more likely to get stressed out by daily hassles or routine problems than they were. In addition, some older individuals are less threatened by illness and disability. They may be better able to accept limitations related to HIV than younger adults.
Study participants discussed the fact that it is common for older adults to slow down because of chronic illnesses, while younger people may try to keep up with their friends and family, so adjusting to HIV may be harder for young people. Older adults may also have fewer family or job responsibilities so they can focus on their personal needs better than younger people. Many of the study participants said that taking care of one's health requires a lot of time and attention. Older adults may simply have more time than young people who have to manage family and job responsibilities. Healthcare providers shouldn't assume that older HIV-positive adults aren't able to cope with and adapt to their illness.
Most of the research efforts during the first two decades of the HIV epidemic focused on keeping people alive and relatively healthy. Few people thought there would be a need to worry about growing old with HIV when all most people hoped for was to extend their lives a few months. Given the success of HAART, it is now important for researchers to focus on the quality of life of people living with HIV. Older adults are one of the fastest growing segments of the HIV population, but relatively little research has focused on seniors living with HIV. There's a lot of work ahead as more and more people live longer with HIV and as new infections among older people continue to rise. One of the biggest challenges will be to change attitudes toward older people and their lifestyles. Obviously someone figured out that older people are sexually active -- why else would Bob Dole appear in advertisements for Viagra?
Until healthcare providers and AIDS service organizations recognize that older adults are at risk and need appropriate prevention interventions and treatment education programs, older adults will have to squeeze into existing programs to receive the services they need. Research is needed to better understand both the unique challenges that older adults face and the resources that they need. For many older adults, HIV isn't viewed as one of the most stressful parts of their lives, particularly when they have to cope with multiple illnesses and other personal and emotional challenges in their lives. The research that has been conducted to date rarely makes a distinction between long-term survivors who have 'aged into' the over 50 group versus those older adults who are newly infected. It is now important to understand the ways in which HIV affects the aging process for these distinct groups of people, especially when age-related diseases begin to affect these adults.
It's good to know that many HIV-positive older adults are able to find happiness and strength while coping with such a challenging illness. It is important to recognize the accomplishments of the past two decades of HIV care. In a way, we're lucky to be in a position to concern ourselves with how older adults will live with HIV. One of the most important goals for researchers and healthcare providers now should be to maximize the quality of life for older adults living with HIV by changing attitudes, asking questions, and offering supportive services for older adults and the family members and friends who help them.
Andrew Shippy is a Research Associate at ACRIA and a doctoral candidate in Applied Developmental Psychology at Fordham University. His research focuses on well-being and adaptation among vulnerable populations of older adults.