Vince Crisostomo is the program manager for the Elizabeth Taylor 50-Plus Network in San Francisco, a social support network for people with HIV.
They host dinners, discussions, and Saturday morning coffees, among other things.
Besides sharing pertinent treatment information, a main goal of the program is to act as a long-term support group to reduce isolation, which increases depression and can deteriorate mental health.
The men they help have endured the trauma associated with HIV in the 1980s, including stigma, harassment, and the loss of friends, lovers, and family, Crisostomo says.
Now in their 50s, 60s, and even their 70s, many don’t have plans on what to do next, including retirement or senior care because they didn’t expect to live this long.
“Most of them planned to die. They didn’t have a plan to live,” Crisostomo told Healthline. “Because HIV has only been around for 30 years, our understanding of it is relatively new and it changes drastically. It’s kind of a work in progress.”
Thanks to advanced treatments like combination antiretroviral therapy, HIV patients are living longer.
In North America, the average lifespan of someone infected with HIV is 63 years, according to one estimate. For gay men, it’s 77 years, while intravenous drug users and nonwhites with HIV have life expectancies of 49 and 58, respectively.
These extended lifespans are a milestone in HIV treatment. No longer the death sentence it once was, the first generation of HIV patients are now facing age-related diseases, including dementia.
Crisostomo said his group could help others spot signs of the beginning of dementia — including forgetfulness and language problems — merely by interacting with one another regularly.
“When you’re isolated, you don’t notice these changes,” Crisostomo said.
The Connection Between HIV and Alzheimer’s
Last week, researchers at Georgetown University announced a 71-year-old man was the first HIV patient to be diagnosed with Alzheimer’s disease.
Dr. R. Scott Turner, Ph.D., a neurologist at G.U., says the patient could dispute what researchers know about HIV and dementia, namely how some patients may be misdiagnosed with HIV-associated neurocognitive disorders (HAND) when they may be developing Alzheimer’s disease, or both.
“Chronic HIV infection and amyloid deposition with aging may represent a ‘double-hit’ to the brain that results in progressive dementia,” Turner said in a press release.
It’s an important designation because there are four drugs approved to treat Alzheimer’s, while HAND is treated with antiretroviral drugs.
While the finding is important, this man may not be the first person with HIV diagnosed with Alzheimer’s.
Dr. Victor Valcour, M.D., Ph.D., associate professor of geriatric medicine in the department of neurology at the University of California San Francisco and co-director of the International NeuroHIV Cure Consortium, says his team diagnosed an HIV patient with Alzheimer’s in 2008.
The difficulty in researching what occurs to older HIV patients is that there haven’t been enough patients so far to extract concrete scientific knowledge from them.
While San Francisco may have more people living with HIV than most other American cities, the sample size to know potential complications in later years is currently too small.
At around the age of 65 the risk of developing Alzheimer’s increases. According to the Georgetown researchers, in 2013 there were an estimated 53,000 HIV patients in the U.S. around that age, a number that is expected to double in less than a decade.
Besides dementia, older HIV patients have a modest increased risk of other conditions, such as heart, liver, and kidney diseases as well as some cancers.
Whether HAND or Alzheimer’s, Valcour says there are tools available to distinguish between the two. Current evidence suggests that language difficulties appear less frequently in cases of HAND, and it progresses at fluctuating levels, as compared to the more drastic progression of Alzheimer’s.
“The truth about Alzheimer’s disease is that we don’t have the answers,” he told Healthline. “It’ll be a while before we know. As long as people are living to be older, they’re at risk for Alzheimer’s.”
While some research suggested the inflammation associated with HIV offered some protection from Alzheimer’s, this apparently isn’t true in all cases. Still, Valcour says, there is a signature of inflammation associated with HIV that still needs to be sorted out.
“It’s not straightforward,” he said.
Specific Needs of an Aging HIV Population
Dr. Laura Cheever, associate administrator of the U.S. Health Resources and Services Administration’s HIV/AIDS Bureau (HRSA) and the Ryan White HIV/AIDS Program, says about 40 percent of HIV patients using their services are now in their 50s.
“I’m thrilled my patients are living into their 60s and 70s,” she told Healthline.
Several of their older patients are already being treated for Alzheimer’s, and older HIV patients typically have better health outcomes of any group. One reason, she said, is because they already plan on being at the doctor’s office regularly because of their age.
But, she said, patients who are diagnosed with HIV later in life face special challenges.
One, they’re more likely to be diagnosed later into their disease progression because older individuals are rarely asked about their sexual activity. This also means they’re less likely to get tested for HIV and other sexually transmitted diseases.
Another concern she has is the level of stigma facing HIV patients that still remains today. Often, older adults diagnosed with HIV have a good amount of pessimism and may not inform their adult children.
This becomes especially problematic if dementia develops, as children who become caregivers may not know their parents need antiretroviral medication. If a person doesn’t take their medication every day, they could run the risk that they could develop resistance.
“That can be a very stressful situation,” Cheever said. “I tell them they should expect a near-normal lifespan and should plan accordingly, including getting in care and staying in care.”
That plan, she said, should include discussing health conditions with loved ones.
“Patients can bring their loved ones into the clinic for that conversation,” Cheever said.