The Intersecting Cognitive and Aging Needs of HIV-Positive Older Adults: Implications for Social Work Practice

Background and Purpose: Cognitive impairment is a significant health concern for people aging with HIV/AIDS, as approximately half of the aging HIV-positive population will be affected to some degree by HIV-Associated Neurocognitive Disorder (HAND). Symptoms of HAND include forgetfulness, trouble concentrating, and increasing struggles to learn new skills. There is no specific drug therapy that can reverse this impairment; therefore, a key role may exist for social workers to help people affected by HAND better cope with their symptoms and develop adaptive coping strategies. To prepare social workers, we conducted a mixed-methods study with the following research questions: 1. What are the self-identified concerns of HIV-positive older adults affected by HAND in Ontario? 2. How have these concerns been addressed through existing social work services? 3. To what extent do participants understand the role of social workers?

Methods: Systems and syndemic theories informed a community-based participatory research (CBPR) approach, whereby four peer researchers worked alongside three qualified social workers to design, deploy, analyze, and disseminate the study. Purposive and snowball sampling were combined to recruit HIV-positive people over age 50 who self-reported cognitive health concerns. Participants completed a survey (n=108), and a subset of the survey sample was interviewed (n=20). The data collection tools focused on questions regarding the social determinants of health, HAND testing, brain health concerns, mental health, existing supports, and the role of social work and community-based agencies. Frequency distributions were derived from the survey data to inform the interview questions. Final analysis was an iterative process, comprised of four two hour full team meetings to determine themes and overall findings.

Results: Quantitative findings indicate that our sample was greatly engaged in their HIV care (e.g., 90% had an undetectable viral load and were receiving services). Despite a strong connection to care, all participants self-identified symptoms of HAND and 58% of participants were not addressing these concerns with anyone (i.e., friends, doctors, social workers). Qualitative findings can be summarized in two main themes: a) fear, shame, and uncertainty concerning HIV and aging; and b) a sense that “social workers are the meat and potatoes” with sub-themes concerning the need for social work HAND support; the positive impact that social workers have already had on participants; and the importance of client-centred social work practice.

Conclusions and Implications: This study found that people are hesitant to raise cognitive concerns out a fear of being labelled inadequate or as “less of a person”. Yet when asked, participants identified that social work could help mitigate these challenges. For practitioners, this can be accomplished by using strategies of emotional regulation to counter fear- and shame-based self-talk, referring to and following-up on neuropsychological screening, and by identifying opportunities to improve cognitive and overall health (e.g., better nutrition and exercise, volunteering, social support). This paper will provide detailed intervention and research engagement strategies for social workers to support clients concerning HIV, aging, and cognition.