Taking Care of Each Other
The first decade of AIDS was defined by death and activism, the second by medicines and hope. How can we rally again to make the third decade one of successful aging?
Social Support Is Health Care
One of the most important findings in every study of older adults with HIV is that social support is critical to successful adaptation to life with HIV. Social support is the functional content of relationships, such as emotional and practical assistance. When family and friends are not able to provide needed assistance, people must rely on community-based services, government agencies, and the health care industry. Social support is particularly important for people as they age. Older adults living with HIV may be particularly challenged because they experience a great deal of distress because of the physical effects of their illness as well as the stigmatization of HIV.
Considerable research shows that social support can boost psychological well-being, reduce the number and intensity of physical symptoms, and improve adherence to anti-HIV medications. The benefits of social support in both reducing psychological distress and improving well-being are more important for older HIV+ adults than their younger counterparts (Chesney et al, 2003). However, the positive effects of such social support are difficult to obtain when people experience isolation caused by reduced social interactions and HIV-related stigma.
Recent studies of older adults with HIV report they may be at risk because they do not get the support they need from family and friends. Studies find that these older adults do not receive adequate emotional support or enough help with daily chores. In three studies, when they were asked if they received enough emotional and practical support, 42%-57% said they did not receive enough emotional support and 27%-79% did not receive enough practical assistance with daily chores (Karpiak et al, 2006; Schrimshaw & Siegel, 2003; Shippy & Karpiak, 2005). These older HIV+ adults may feel more isolated and stigmatized and have difficulty managing their illness (Heckman et al, 2002). Anxiety, depression, and thoughts of suicide are higher among people who lack social support resources (Heckman et al, 1999). This can be a real problem for the majority of HIV+ older adults who live alone (Karpiak et al, 2006; Shippy & Karpiak, 2005) and are isolated from family and friends.
Informal support networks are a critical component for management of any illness and one of the pillars of medical care in the United States. Family and friends are often the only resources that allow an individual to age in place. Based on 2004 estimates, nearly 29 million Americans are active caregivers, providing the equivalent of $306 billion in paid care annually (NFCA & FCA, 2006). Where are all the caregivers for older adults living with HIV? On the surface, it appears that older HIV+ adults have large, diverse social networks. Yet the majority of study participants reported inadequate social support resources. How can individuals with considerable social networks not have someone to rely on in times of need?
A disconcerting picture of these support networks emerges. We find these adults either rely on themselves or do not know to whom they can turn for assistance. A closer examination of the social networks of older HIV+ adults revealed sharply truncated networks (Shippy & Karpiak, 2005). One reason is that many people chose not to disclose their serostatus because of stigma. Failure to disclose creates barriers and can contribute to the lack of social support. Older adults are unwilling to ask for help with instrumental tasks of daily living because they do not want to disclose why they need assistance. Feelings of isolation and withdrawal from the support network contribute to the high level of unmet emotional need they experience. Most of these older adults rely on friends who are also HIV+.
Where Have the Caregivers Gone?
HIV/AIDS is often considered the rallying point for the gay rights movement in the 1980s. The gay community was being devastated by the disease, and there were no effective treatments. Groups like ACT UP demanded action by the government and the medical community. Gay men and their allies also formed organizations like GMHC, God's Love We Deliver, and others to provide services for their dying brothers. Although sometimes sick themselves, these men and women became caregivers, often providing intensive assistance to make their friends and family members comfortable as they faced the ravages of AIDS and death. With HAART people began living instead of dying, and short-term caregiving, often heroic, was no longer required. As the HIV population ages, long-term caregiving will be needed. But who will provide this support? When informal support resources are exhausted, formal support systems must intervene to meet the needs of the older individual with chronic illness(es). AIDS service organizations and related community-based organizations may be able to address the gap between the needs of older adults living with HIV and the ability of their networks to care for them. But existing service agencies will need to evolve to meet the needs of their older clients. Or older adults with HIV must seek the support they need from mainstream social service entities. Many older HIV+ adults are in relatively good health, and the isolation of the HIV ASO culture inhibits them from relating with their peers, especially those without HIV. The comment from these older adults can be summarized as "Talk to me about anything but HIV."
The challenge is clear. The answer involves reducing stigma and developing strategies to mainstream older adults with HIV so they can engage the supportive health and social services they need in order to age successfully.
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.