Researcher Illuminates Life with Illness

Article excerpt

"My biggest fear of all was telling my daughters about it and the most important person was my Mom."

-Taleef, age 50

"So when I got there [to the medical clinic] they hand me my chart and I'd go see the blood pressure nurse, then I'd go see the nurse that draws blood, then I'd go see the doctor. I'd walk around with this big chart with this big sticker on it-HIV Positive. Everyplace I went I was carrying this. I felt why don't they just tattoo my forehead."

-Louis, age 64

The history of AIDS in older individuals was first documented in a 1986 case study involving a 57-year-old man who was diagnosed with Alzheimer's disease but was found on autopsy to have progressive dementia caused by HTLV-HI, the term used at that time for HIV. By the end of the 19805, various papers and one book had been published on the subject of HIV/AIDS among adults ages 5o-plus, along with some articles in the popular press. About this time, while establishing an AIDS case management project in Northern California, I began to recognize the phenomenon of older people infected with the HIV virus. As a practicing social worker, I found my interest piqued-an interest that has been sustained for two decades.

From 1986 to 2005, only five books were published on HIV/AIDS and aging, along with six special issues of peer-reviewed journals and numerous individual journal articles. For the past several years, my own research has taken a variety of shapes and approaches, including secondary analysis of existing data, a two-year quantitative study and, more recently, a mixed-methods study that included not only gathering quantitative data but also doing qualitative interviews. Much of this research has been delicate and sensitive because it required the openness and willingness of many people with HIV/AIDS to share details of their lives and personal stories. I am indebted to these individuals beyond words. This work has also required the trust and cooperation of numerous agencies, especially the Pierce County AIDS Foundation, which serves the Pierce County, Wash., area.


If we are going to make progress in areas of HIV education and prevention, one of the issues we need to confront is the attitudes and beliefs of the public and older adults, as well as medical and service providers, about aging and sexuality. The misconceptions and ageist attitudes infused in our society result in poor prevention efforts, unnecessary infections, delays in diagnosis, misdiagnosis and, ultimately, unnecessary deaths.

Older adults, despite our culture's strongest denial, are exposed to HIV by the same means as younger people: unprotected sex and drug use. These risk factors will certainly continue to increase in the coming years with the aging of the boomer generation. The experiences of several participants from one of my studies, funded by the National Institute of Mental Health (NIMH), confirmed that society's beliefs regarding age and HIV need to be updated. One 64-year-old informant, Christa, observed, "In some cases, I believe older people are held to a different standard, that 'Well, for crying out loud, you should have known better.'"

In addition, many older people see their age or sexual orientation as conferring immunity from risk. Evidence indicates that compared with younger people, those ages 5o-plus are less likely to use condoms or practice methods of safe sex, to be tested for HIV or to know their own HTV status. In a study in Central Florida, Janice E. Nichols and colleagues reported in Aging With HIV: Psychological, Social and Health Issues (San Diego: Academic Press, 2002) that more than 60% of older respondents had minimal knowledge of behaviors associated with risk for HIV exposure. In my research, one informant commented that older adults were neither educated at the time when HIV/AIDS came to the fore, nor had the advantage of school health education related to this topic. …