HIV/AIDS has had a profound impact on all aspects of life for people in sub-Saharan Africa. Even though the region’s population accounts for only 11 percent of the world’s population, nearly 70 percent of people globally living with HIV/AIDS reside there. The epidemic has posed serious threats to economic and social stability, as family structures are being uprooted in cultures where elders traditionally rely on working-age adults as caregivers.

The HIV epidemic has undercut that structure, leaving as many as 1 million seniors—about the size of the population of San Francisco, according to the team’s estimates—with no working-age caregivers.

Much attention has been paid to the issue of children orphaned by HIV/AIDS, but researchers at the Center for Health Policy and Center for Primary Care and Outcomes Research (CHP/PCOR) are currently examining how HIV/AIDS is affecting living arrangements for the elderly population in sub-Saharan Africa. The project, titled “The HIV/AIDS Pandemic and Africa’s Orphaned Elderly,” is funded by CHP/PCOR’s Center on the Demography and Economics of Health and Aging.

“Usually if people foresee a caregiver dying, they would make other arrangements. The fact that you see so many people living alone, despite all these extra arrangements that people make, suggests the orphaned elderly problem is an extreme one.” “The HIV epidemic in Africa has disrupted the population in many ways, but one effect that has not been extensively studied is the effect on caregiving for elderly people in Africa,” explained Jay Bhattacharya, a CHP/PCOR core faculty member and one of the researchers involved in the project. “In much of Africa, there is a common family structure where the older people in the family will come and live with their sons and daughters.”

In order to investigate the effect of the HIV/AIDS epidemic, CHP/PCOR core faculty members Grant Miller and Jay Bhattacharya and Stanford University student Tim Kautz obtained data from UNAIDS—the Joint United Nations Program on HIV/AIDS—and have matched that data with another data source of high-quality information on the living arrangements of individuals in 18 countries.

It is fairly novel to use this latter data source—the Demographic Health Surveys—for a study of the elderly, as opposed to the more historically common use of researching women, children, and reproduction in low- and middle-income countries.

“The most interesting part of this study, to me, is not that HIV creates more orphaned elderly—it is almost guaranteed that increases in the HIV mortality rate will leave some elderly without caregivers,” Kautz said. “The surprising part is the magnitude of the problem. ... These 18 countries represent only about 60 percent of the population of sub-Saharan Africa, so the scope of the problem is probably even broader than we estimate.”

By relating the evolution of AIDS mortality in different African countries over time with changes in living arrangements among the elderly, the data have allowed the researchers to parse out rather precise information regarding familial relationships and living arrangements. The focus here, of course, is to examine how elders are being cared for in spite of the epidemic.

“These are not elderly people who are affected only because a working-age caregiver died,” Miller explained. “Rather, these are people for whom there has not been any fallback or alternative arrangement made to live with a distant relative or someone else. These are people who used to cohabit with a working-age caregiver and now don’t.”

This distinction makes all the difference. Bhattacharya added, “Usually if people foresee a caregiver dying, they would make other arrangements. The fact that you see so many people living alone, despite all these extra arrangements that people make, suggests the orphaned elderly problem is an extreme one.”

And with little formal public sector support for the elderly—such as the existence of public pension programs seen in wealthier countries—the problem is exacerbated.

“By and large, there aren’t long-term care facilities—even if one could afford them—so people really don’t have many options aside from relying on their families for long-term care,” Miller said. “A less extreme but potentially very costly or consequential outcome is that you live with a less closely related or unrelated working-age adult, though we can’t say directly if that’s worse than living with a more closely related adult. And, it imposes dependency burdens on households that previously weren’t bearing them.”

HIV/AIDS is also distinctively different from other diseases. Most diseases afflicting large populations tend to kill people at very young and very old ages. HIV/AIDS, however, is unique in that its impact falls disproportionately on adults in their prime working years.

“To put these numbers in context, these are countries where the typical person isn’t expected to live to old age in the first place,” Miller said. “Given all the things that tend to kill people before old age, you have a relatively small share of people making it to old age, and some of these people are taking care of their grandchildren, too.”

The team is viewing their research as a pilot project that will provide initial estimates about the size of the problem.

“A nice extension of the work would be to figure out a way to know more about the disability status of these people,” Miller explained. “We make the assumption that people tend to be less healthy when disability occurs at early ages, so these are people likely to be in trouble. But, it would be nice to know more precisely what the functional status of these people is in order to figure out the right way to support them.”

There is considerable country-to-country variation in the social, political, and economic issues to be confronted when addressing the dilemma of the orphaned elderly as well, from infrastructure and government processes to politics and more, so finding a one-size-fits-all solution may be difficult.

“The data suggest that there needs to be some sort of systematic way to address the orphaned elderly problem— right now, it just seems like it’s not being addressed at all,” Bhattacharya said. “Solutions will vary a lot by country. In some, it might be possible to have group homes, where you wouldn’t limit it to AIDS orphans, but open it to anyone living alone. In other countries, that might not be possible because the concentration of older people living alone is not high enough.”

The researchers hope that defining the dimensions of the problem in their pilot project may help over the longer-term to develop more systematic approaches to care for the sizable elderly and orphaned populations of Africa.