The Impact of AIDS on Older Caregivers

September 10, 2001

Heather Heilman
Phone: (504) 865-5714

It's no secret that HIV and AIDS devastate the lives of those who contract the disease. But although the plight of AIDS orphans has received some attention, the impact of the epidemic on those closest to its victims is often overlooked. In Africa and Thailand, places where the epidemic has hit hard, people with AIDS typically return home in their last days, weeks or months to be cared for by their parents.

And with the death of their child, the parents also may be losing a source of financial support in their old age. Mark VanLandingham, associate professor of international health and development, is one of the first people to study how AIDS affects people over 50 in the developing world, where most AIDS cases occur.

My colleagues and I have been working on AIDS in Thailand for 10 years, VanLandingham said. The more data we collected, the more it became clear that the whole burden of caretaking and taking care of the orphans was falling on the older generation, and no one seemed to be paying much attention to them. VanLandingham and his colleagues at the University of Michigan and Mahidol and Chulalongkorn universities in Thailand decided to find out how the generation over 50 was being affected by the disease.

Their work is supported with grants from the National Institute of Aging. The AIDS epidemic in Thailand is fairly severe, though not as bad as it is in some parts of Africa. Several years ago it looked like the situation in Thailand could get even worse than in Africa, but an aggressive public health campaign was successful in slowing the epidemic down.

AIDS gained a foothold in Thailand through the brothels that were, until recently, widely patronized by young, unmarried men. These men, not knowing they were infected, later married and spread the disease to their wives.

Currently, about two percent of Thais between the ages of 15 and 49 are HIV-positive. In comparison, that number is about 20 percent in the hardest-hit areas of Africa. Even so, VanLandingham and his colleagues estimate that 10 percent of a recent cohort of Thais over 50, and close to 20 percent of those who live in the northern part of the country, will suffer the death of a child due to AIDS. Many more will escape this fate only by dying first themselves.

In Thailand, about two-thirds of people with AIDS will end up living with a parent before they die, VanLandingham said. Often, you'll see a married couple who are both infected. The spouse who isnt sick yet will take care of the spouse who dies first, then the one whos left will go back to the parent. These parents will face the emotional devastation of watching their children die agonizing deaths.

And there may be other consequences as well. Older people may have a hard time with the more physically demanding aspects of caring for the sick, such as having to lift or carry the patient. They may be exposed to infections like tuberculosis that might threaten their own health.

Thailand has a good national health insurance system that keeps down the cost of basic medications for families so that caring for a child with AIDS is not usually a direct financial burden for the parent. The latest AIDS cocktails, combinations of drugs that allow people with AIDS to stay well longer, will soon be available in Thailand.

Along with all their benefits, they may bring increased costs to parents since the government will find it difficult, if not impossible, to pay for these treatments. In Thailand, adult children typically help support their retired parents. So the death of a child could cause long-term financial problems for the parents, particularly if they also are left with the responsibility of taking care of orphaned grandchildren.

This is a key topic of investigation. The researchers used statistical data, surveys and open-ended interviews to get a better understanding of the impact of AIDS on older Thais. They're still analyzing the results, but its clear that the AIDS epidemic does pose considerable long-term hardships for many older people in Thailand. And thats likely to be true in other parts of the developing world. We suspect that parents are in a very similar situation in Africa, VanLandingham said.

There's not much data yet, but, anecdotally, people are starting to realize it's the parents who shoulder the burden. And since the epidemic is much greater in Africa, many more parents are affected. VanLandingham hopes his work will bring more attention to the profound impact AIDS is having on older people in places where the epidemic works differently than in the United States.

Tulane University, New Orleans, LA 70118 504-865-5000