Helping Cope with Brain Changes: A Q&A
Missed doctor’s appointments and trouble adhering to HIV meds are common consequences of the HIV-associated neurocognitive disorders (HAND for short) that many people experience. Depression and isolation are also potential effects, says Bobby Fisher, manager of San Francisco AIDS Foundation’s housing and financial benefits programs, who has witnessed the devastating effects of HAND: “It becomes easier to not engage than it is to share with folks, ‘I’m having memory problems lately. I’m late to this appointment or this lunch date because I didn’t remember.’”
But can the brain be “re-trained” to fight memory loss and other neurocognitive changes?
Studies with aging people in the HIV-negative population say yes, and a unique partnership is helping San Francisco AIDS Foundation’s own clients play a role in developing a new treatment for HAND—a non-invasive intervention that takes advantage of “neuroplasticity,” the brain’s ability to remodel (or change) over time.
In a new Q&A, Fisher explains how the foundation is working with software company PositScience to tailor an existing “brain-training” program to the needs of people with HIV-associated neurocognitive disorders. Check out the full Q&A at SFAF.org to learn what this partnership means for the people we serve, and read the excerpt below for Bobby’s take on how you can help cope with HAND in your own community.
What can people do in their own communities to help cope with HAND?
First of all, for people who are working with folks who are HIV positive, it’s important to ask questions about whether they may be experiencing some of these symptoms—and make it clear that these symptoms are not unusual, and remove the shame around them. I think a lot of times, these symptoms can make people become isolated because they don’t disclose that they are having memory problems—it’s a huge anxiety producer. When you are afraid that you have diminished cognition, it’s not something you are necessarily going to share unless someone opens the door to that conversation and asks questions.
We are so pleased to be partnering with PositScience to explore and develop a non-invasive treatment for HAND. In the meantime, coping strategies can have huge benefits for people who have cognition problems. There are certainly steps you can take to mitigate the difficulties associated with these symptoms. For example, you can sit down with your doctor and talk about the difficulty you’re having adhering to your medication regimen, because you keep forgetting, and come up with a strategy that works for you; maybe you can associate taking your medications with part of your daily routine, or you can organize your medications with a daily pill box like a Mediset to take the guesswork out of taking your pills every day.
So by engaging and coming up with coping strategies, we can help interrupt that domino effect with cognitive problems and depression and adherence, and hopefully help people lead more engaged, fuller lives….