Missed doctor’s appointments. Trouble keeping up with medications. Forgetting to pay the bills. These are just a few common consequences of the HIV-associated neurocognitive disorders (HAND for short) that many people experience. But scientists today understand that the brain can be “re-trained.”
That’s why Bobby Fisher, manager of San Francisco AIDS Foundation’s housing and financial benefits programs, is excited about a new partnership with “brain-training” software company PositScience. Find out what this partnership means for the people we serve, and how you can help cope with HAND in your own community.
Do you see clients here at the foundation with HIV-related memory and mood changes?
It has become increasingly common for some of the people we serve in our housing and financial benefits programs to report cognitive deficits like memory difficulties, attention problems, and mood changes. People with cognitive deficits can have difficulty in several areas of their lives: adherence to HIV medications, keeping medical appointments, and paying bills on time, to name a few. It’s a challenge for both patients and clinicians to determine if these conditions are due to aging, a complication related to HIV infection or a combination of the two; the anxiety stemming from this uncertainty alone can be debilitating.
These kinds of memory, mood, and attention problems also contribute to isolation. When people have memory problems or difficulty finding words, they may find that their social interaction is diminished: 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.’ Isolation is correlated with depression, and depression is not good for your immune system, or for your adherence to HIV medication, so there’s a “domino effect” in terms of health and well-being.
How is the foundation partnering with PositScience to address this, and what will it mean for our clients?
The foundation’s housing and financial benefits staff work closely with program participants to develop strategies to cope with memory and attention problems so they can continue to stay healthy. But coping strategies alone do not address the emotional and relational toll that cognitive deficits can have on one’s life. That’s why this new intervention is so important.
There have already been promising results in studies showing that this kind of brain-training software can improve attention problems and can also delay the onset of depressive symptoms in the aging population. There are all kinds of aging-associated difficulties that this kind of brain training can address when it’s introduced—symptoms that are usually associated with aging and are also associated with HAND. Now it’s a matter of fine-tuning the intervention to be used in an HIV context.
PositScience approached us in their development of their treatment for HIV-associated neurocognitive disorders. Our role right now is to locate participants for their initial survey so they can collect data for the development of the interface for the online treatment—that is, how people interact with the online program. Going forward, our role will be to continue to identify potential participants—people affected by HAND who might be interested in participating—so they can continue to refine the interface for their therapeutic model.
Phase 2 will be in-depth telephone conversations with people who have engaged with the survey. These will be hour-long conversations, and participants will be compensated for their time. PositScience will use that feedback to make changes to the interface, and they can then start user testing and refine it further in Phase 3. For that phase, we will be helping identify people affected by HAND who have no prior experience with the intervention, so they can interact with it and provide more information to further refine it. So we’re really at the beginning of developing this intervention, and there are many opportunities to get involved.
Once this therapy is developed, I’m hoping that it’s going to serve a really broad range of clients. People can use the computer lab in our client services lobby to engage with the survey, and eventually we will have on-site opportunities for people to use the intervention in a more private setting.
This is really promising for the people we serve. 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.
Check out the survey here, and visit PositScience online to learn more about their software and register to try out a free brain-training exercise. Have you seen how the foundation’s housing and financial benefits staff have had an impact our community? Share some words of encouragement in the comments below!
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