The Brain Health Now and Action for Brain Health Now studies have been conducted across Canada since 2013. Our goal was to better understand brain health, quality of life and cognition in people aging with HIV. Cognition is a term that describes the ability to understand, learn, remember, concentrate and solve problems. In 5 sites across Canada, 856 participants participated in the study and were assessed every 9-12 months. The research team documented

• their medical profile, such as HIV control, medications and other physical illnesses;
• the presence of symptoms such as anxiety, depression, fatigue and pain;
• physical, emotional and social functioning;
• lifestyle habits such as physical activity and smoking;
• their environment, such as social support and stress;
• and quality of life.

The study is unique in its approach to cognition. It documented both the symptoms reported by the participants as well as a measure of cognition. Thus, the data collected enable us to properly assess the importance of measured and self-reported cognition in functioning and quality of life.

Thanks to our approach, which assessed several aspects of a person’s life (and not just the medical aspect), we have an excellent understanding of what explains quality of life! We can provide evidence-based information on which factors are most important for optimizing quality of life. We are also able to provide evidence-based information on the factors that explain decline in cognition 10 years, how to protect brain health and how to optimize cognitive functioning.

In order to make the knowledge gained from this study useful for people living with HIV, we have developed a program through which people with HIV can see how the research evidence applies to their specific situation and can guide their actions to improve their quality of life and protect their cognition. However, we know that adopting a new behaviour is difficult! Who hasn’t tried to quit smoking, eat better, get more physical activity or live a more Zen lifestyle? It’s hard to maintain motivation. That’s why we have developed an 8-week module to be administered in groups or dyads. The goal of this module is to provide support for individuals engaged in self-management and to equip them with the knowledge and strategies that will help them to successfully implement behavior change.