There are about 75,500 Canadians living with HIV, according to the latest statistics. And that population is aging. Indeed, it’s estimated that in a very few years half of all people living with HIV in Canada will be 50 years of age or older. This is good news because it shows that effective treatment with combination antiretroviral therapy can allow people with HIV to live a near-normal lifespan. The not-so-good news, however, is that 24% of all new HIV diagnoses in Canada in 2014 were among people aged 50 or older.
While those of us with HIV are living longer, we can also be vulnerable to other complex health issues, some of which may be related to the aging process and some to HIV or to the medications we take to keep us alive. One of those related conditions is HIV-associated Neurocognitive Disorder, or HAND for short.
In the early days of the HIV epidemic, the prevalence of HIV-associated dementia, the most serious form of HAND, was high. Although that prevalence has significantly decreased in the current era, it’s estimated that 30-50% of people in Canada with HIV will be affected by at least an asymptomatic form of HAND, or by one with mild symptoms. But just because there may be no symptoms, or because the symptoms may be mild, doesn’t mean we shouldn’t worry about it.
“I can’t remember things. My short-term memory is not very good. My long-term memory is fine. And I did a [HAND test] with lots of different tests and everything. And I left — and it was a full day. And I left there feeling inadequate because I couldn’t remember how to — a lot of things.” (study participant)
While there’s exciting research underway to find how to help clinicians diagnose and treat HAND effectively, there’s been little work so far to address how social workers and service providers in community-based HIV and other service organizations can support older adults with HIV who are concerned about their brain health.
To begin to address this deficit, in 2015, ACT, Canada’s largest community-based HIV service organization, located in Toronto, and the Factor-Inwentash Faculty of Social Work at the University of Toronto, conducted a research study to acquire empirical data from people most affected by HAND as to how social workers and other service providers can most appropriately support them. This research was funded by the Ontario HIV Treatment Network.
Watch the video below!
The study had two phases. The first was a quantitative survey of 108 people over 50 living with HIV who had concerns about their cognitive health, in order to understand better the demographics, concerns and social work experiences of the sample. The second comprised qualitative interviews with 20 survey participants to understand their concerns and experiences.
“Well, I’ve never dealt with psychiatrists before except like my first visit last week so I think it would be unfair of me to make any kind of statement. But social workers I find are more, what’s a good expression? Meat and potatoes. Right down there and they probably are more understanding and can link you to different resources” (study participant)
Principal investigator Andrew Eaton worked with four peer researchers (full disclosure: I was one) as full members of the research team through all stages of the study. The findings indicated that survey participants were trusting of HIV-specific service providers, that they were predominantly coping independently with their concerns about brain health, and that they were waiting until those concerns impacted their activities of daily living before accessing neurocognitive screening.
Based on these findings, the study suggested that social workers and other service providers should stay informed about the signs and symptoms of HAND, utilize their relationship with service users to refer and follow-up about HAND testing and to identify coping strategies, while maintaining a holistic view that recognizes complicating factors and resiliencies in individual lives. Finally, because talking about brain health can be difficult, the researchers concluded that service providers needed to offer safe, non-judgmental spaces for people living with HIV to discuss cognitive concerns.
“Right and that’s where I think the supports are needed that when, you know, shit happens you’ve got someone that you can depend on to try and explain it to you in a way that you understand or give you choices of how to either resolve what may be happening … what’s available to you to keep you sane and healthy.” (study participant)
It needs to be noted that this study was based on a self-selected sample of mainly older, urban, white, cis-gendered gay men living with HIV. A second study is in the planning stages that will attempt to adjust for this bias by conducting a more broad-based cross-Canada survey that will more accurately reflect the demographics of Canada’s population of people over 50 living with HIV.
Below you can watch a video of the presentation of a community report-back on this study and its findings.
You can also read a text-based version of this report here.