Grant: Travel Awards - Institute Community Support

Background: As people with HIV age, cognitive health concerns are common and can result in feelings of significant uncertainty. For people aging with HIV (PAHIV), age-related uncertainties are heightened by overlapping experience03s such as HIV-based stigma, isolation, and concerns about healthcare discrimination. This study explored the experiences and needs of PAHIV while navigating cognitive concerns and uncertainty. Methods: We recruited 45 PAHIV (40 years or older) with self-identified cognitive concerns to participate in (a) an online demographic survey and (b) a peer-led focus group interview via Zoom. Three researchers analyzed the interviews to identify key themes, with input from PAHIV and healthcare providers. Findings: Our participants consisted of 20 cis women, 19 cis men, 2 trans men, 2 non-binary folks, one Two-Spirit person, and one gender non-conforming person. Although only 4 participants had been formally diagnosed with a dementia, all 45 participants reported at least five cognitive concerns, especially issues with memory and attention. In our interviews, participants described feeling increasingly uncertain as they aged, especially when navigating cognitive challenges alongside HIV. They shared about negative and positive experiences while interacting with healthcare providers to seek care for HIV, aging, and cognitive concerns. Participants a highlighted gaps in support for their cognitive and emotional needs. Significance and Implications: Aging is an uncertain process-and for PAHIV, uncertainty is intensified by HIV and cognitive concerns occurring earlier than for aging peers who are not living with HIV. PAHIV often rely on informal support networks due to limited formal services. Participants emphasized the need for improved supports, including earlier and regular cognitive screenings, tailored psychosocial supports, and education about cognitive health. Addressing these needs is essential for better care as people living with HIV age.