People living with HIV are often confronted with a variety of physical ailments related to the disease or as a result of receiving treatment. Many may not realize, however, that dealing with a serious illness like HIV can also involve threats to one's mental and emotional health. One of the most serious issues for people living with HIV is depression. While the public is bombarded by advertising for drugs to treat depression, few people understand what depression is, the negative impact that it can have on quality of life, or the many treatments available. Moreover, the experience and treatment of depression can vary significantly depending on age, gender, or other life circumstances. In this article, we will focus on the causes of and treatments for depression among older women with HIV, one of the fastest growing groups of individuals living with the virus.
Depression is a common mental health issue that may affect upwards of 121 million people worldwide. The World Health Organization defines depression as low mood, loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite (either too much or too little), low energy, and poor concentration. These symptoms may point to depression if they last for two or more weeks. People may experience all or only a few of these symptoms. Depression can become recurrent and lead to difficulties in the ability to take care of daily responsibilities. Depression may affect physical functioning, and it is one of the leading causes of disability among persons of all ages. At its worst, depression can lead to suicide, which results in the loss of nearly one million lives around the world every year.
Depression has long been recognized as a very common problem among persons with HIV. The reported rate of depression for people with HIV ranges anywhere from 5% to 60%, depending upon how it is defined and measured. The smaller figure refers to a clinical assessment by a psychiatrist or psychologist, while the larger figure is associated with depression screening tools and self-reports of depressive symptoms. Trying to obtain an accurate picture of the extent of depression among persons living with HIV is further complicated by the fact that many of the symptoms of depression, such as change in appetite or fatigue, may also be symptoms of HIV disease or treatment. In addition, people with HIV may also use alcohol and other drugs, and the effects of these substances can mimic the symptoms of depression. To complicate things further, depression is also common among former substance users. Whatever definition of depression is used, however, even the minimal experience of depressive symptoms can interfere with a person's life and make coping with HIV more difficult.
Women with HIV are about seven times more likely to be depressed than those who are not infected. They are more often affected by depression compared with men at every stage of the disease. Depression may also be more life-threatening for women with HIV than for men. One study, conducted at Johns Hopkins, found that women with HIV are at a heightened risk for suicide. In this study, nearly one-third of women reported thinking about suicide, and 16% had actually attempted it. But even with suicide out of the picture, depression has been linked to a greater risk of mortality for women with HIV. Another study, at the Yale School of Medicine, found that, among women with HIV and CD4 counts below 200, 54% of those with chronic depression died compared with only 21% of those who were not depressed. Several research studies have documented that women with HIV who are depressed are less likely to be taking HIV medications and less likely to adhere to their regimens than those who are not. Women who are not taking HIV treatment may be shortening their lives by delaying this life-saving therapy, and those who do not adhere to treatment risk developing drug-resistant strains of HIV.
What accounts for the high rate of depression among women with HIV? Depression is a frequent consequence of trying to cope with a chronic illness like HIV. Despite the fact that effective treatments are available today, an HIV diagnosis can still be devastating. Because HIV is an infectious disease with no cure, it can potentially change the life of anyone who has it. Some people are overwhelmed and unable to cope with the diagnosis or feel helpless when faced with living with the condition, and feelings of helplessness are often at the root of depression. An HIV diagnosis can also provoke anxieties leading to depression, often around fear of disclosing HIV status to friends, family, and significant others and the stigma people with HIV still face. Stigma, in turn, can lead to feelings of loneliness and social isolation, which have been linked to depression among persons with HIV.
Much can also be explained by looking at life circumstances. HIV affects women of color disproportionately; African-Americans and Latinas account for 77% of women diagnosed with AIDS in the U.S. These women are prone to a large number of stressful conditions, including poverty, violence, overcrowding, racism, unemployment, sexual victimization, and being single parents. In addition, they are disproportionately likely to have experienced traumatic life events, including sexual assault, partner abuse, and separation/divorce, all of which can result in depression in their own right. Thus HIV often adds to the burden of stress many women of color faced prior to diagnosis. A University of Wisconsin study that focused on low-income, minority women with HIV quoted one woman who said, "You know, HIV is not my biggest problem."
While problems such as stigma, loneliness, and social isolation can lead to depression among people with HIV, there are things that can help. Social support -- or companionship, help, and affection from family and friends -- has been repeatedly found to help people with HIV avoid depression. Members of a social network not only provide day-to-day help with things like shopping or housework but also serve as caregivers in the case of illness. Contact with members of the social network helps to relieve feelings of loneliness and isolation. Family and friends also provide substantial emotional support, invaluable for people facing life-threatening illness. Another positive force against depression is a sense of spirituality. Although not all people are spiritual or religious, some find their beliefs help them to cope with HIV, lessening feelings of depression. Spirituality is thought to guard against depression by providing a sense of hope, which is to say an expectation of a good future. Thus, for people with HIV, a good support system as well as spiritual and religious coping may prevent or reduce depressive symptoms.
Older women with HIV need to be considered as a special case because age can affect the experience of depression. Growing older can also bring additional life challenges, such as a greater chance of having one or more chronic illnesses, transitions such as retirement, and other major changes, such as the loss of a spouse, friend, or other family member. For older women with HIV, these may increase feelings of sadness and depression. While studies have found that older people in general are not more prone to depression than younger adults, this may not be the case among people with HIV. Although the research is limited, findings do suggest that depression may be more common among older people with HIV as compared with younger adults. Whether this is a result of HIV or its treatments is not known. The simplest explanation is that the challenges of aging increase the level of stress beyond what is usually experienced due to HIV and the life circumstances of many of these women. Unfortunately, there is very little research that has looked at older women with HIV. A notable exception is the Research on Older Adults with HIV (ROAH) study conducted by ACRIA.
The ROAH study was conducted in 2005 in New York City, then the U.S. epicenter of the HIV pandemic, where almost one-third of those with HIV were over 50, 32% of those women. The participants included 264 women from 50 to 76 years old, with an average age of 55 years. These women mirrored the city's population of HIV-positive women in terms of race and ethnicity: 58% were African-American and 34% Latina. Only one-third had education beyond high school, which reflects the diminished economic resources for many of these women. The average time since HIV diagnosis was approximately 11 years.
ACRIA was interested in how physical and mental health, economic resources, loneliness, stigma, social support, and spirituality were related to depressive symptoms among these women. Overall, HIV-positive older women reported high levels of depressive symptoms; over 60% reported symptoms suggesting the need for clinical treatment of depression. In addition, their heightened levels of depressive symptoms were associated with greater numbers of health conditions in addition to HIV, greater need for assistance with day-to-day activities, greater degrees of emotional loneliness, and higher levels of perceived stigma. On the other hand, women who remained mentally active were less likely to suffer from depression, and those women who reported higher levels of spirituality were less likely to have high levels of depressive symptoms.
The impact of aging on people with HIV may lead to greater depression, given that the study found that women with a greater number of health conditions and a greater need for assistance were more depressed: Since health conditions and disability both increase with age, they may compound any physical difficulties stemming from HIV, thus increasing the risk for depression. Stigma is also a strong predictor of depression, and much needs to be done to change public attitudes about people with HIV. On a more optimistic note, these findings suggest that staying mentally active -- reading, doing crosswords, or engaging in other kinds of mental activities -- may help to protect older women with HIV from feeling depressed. For those who are religious or spiritual, keeping those beliefs alive may protect against depression as well. The high degree of depressive symptoms reported by older women with HIV in New York City, however, with over 60% having significant levels of depressive symptoms, suggests that much more needs to be done in terms of identifying and treating depression.
The most extensive evidence-based research in the treatment of elderly depression comes from studies of antidepressant medications. Hundreds of studies have confirmed the usefulness of these drugs to relieve or prevent depression. But elderly patients often take longer to respond to treatment than younger patients, and six to twelve weeks of treatment may be needed before benefits begin to be seen. Poor adherence to antidepressants is the most frequent cause of poor response, but a poor response among persons who do adhere to antidepressant therapy can be addressed by trying alternate medications.
Many older people, including women with HIV, have coexisting medical conditions for which they are taking medications. Thus it is vital to give careful consideration to safety when choosing an antidepressant medication -- some antidepressants should not be combined with medications used to treat HIV or other diseases, or will require their doses to be adjusted. Plus, other psychiatric medications might be required to treat other conditions such as anxiety, psychosis, insomnia, and dementia.
In rare cases that do not respond to psychotherapy and medication, or when antidepressant drugs cannot be used because of other medical conditions, electroconvulsive therapy has been shown to be effective and safe. Finally, peer or self-help groups for older people with depression are related to improved outcomes, and may be more acceptable to older women with HIV than clinical mental health services.
Despite the high rates of depression among older women with HIV, many do not take advantage of mental health services. One possible explanation for this is a lack of clear communication between people with HIV and their healthcare providers about depression. There may also be a lack of mental health services that are appropriate for older women with HIV. These problems cannot be addressed without the following changes to public policy:
Increased efforts to educate people with HIV, along with their physicians, religious leaders, educators, and others who serve them, are necessary to address ignorance about mental illness, its diagnosis, and the effectiveness of treatment. Public education efforts are also needed to address stigma around mental illness and depression, as well as stigma concerning HIV.
Mental health services are generally designed, structured, and financed on a medical model. People are expected to come to a place where mental health services are provided by professionals, who rarely provide services in the community or in people's homes. The services provided are generally a combination of counseling and medication. A fundamentally new vision of services for persons with HIV should be developed, one that emphasizes outreach in community settings and the provision of a variety of support services.
Problems of what is referred to as clinical and cultural competency -- basically the inability of professionals to communicate with people from different cultural and educational backgrounds, or with limited abilities in English -- are commonplace in the mental health system. While some attempts are being made to address these issues, a serious push with regard to cultural competency and appropriateness is needed. This calls for changes in professional education, major training initiatives, changes in organizational structure and culture, and new regulatory requirements that make licensing dependent on improvements in serving people of diverse cultures.
Depression is a serious problem for many older women with HIV. Even relatively low levels of depressive symptoms have been found to have negative consequences with, for example, HIV treatment adherence. It is therefore important that older women with HIV, as well as their medical and social service providers, be aware of this issue and be prepared to address depression as one of the many ways for improving life quality in the face of this illness.
Mark Brennan, Ph.D., is a Senior Research Scientist at ACRIA, and Stephen Karpiak, Ph.D., is Associate Director for Research.