“My body’s a 50 year‐old but my brain is definitely an 85 year‐old”: exploring the experiences of men ageing with HIV‐associated neurocognitive challenges

Abstract

IntroductionResearch investigating HIV, neurocognition and ageing is well developed using neuropsychometric or other quantitative approaches; however, little is known about individuals’ subjective experiences. The purpose of this article is to explore the experiences of men aged 50 and older who self-identify as having HIV-associated neurocognitive challenges. In particular, this study uses the Episodic Disability Framework (EDF) to explore participants’ perceptions regarding: 1) symptoms/impairments, difficulties with day-to-day activities, challenges with social inclusion and uncertainty; 2) ageing as related to their HIV-associated neurocognitive challenges, and 3) the episodic nature of their HIV-associated neurocognitive challenges.MethodsThis qualitative, interpretive study involved in-depth, semi-structured interviews with 12 men aged 50 years and older who self-identified as having HIV-associated neurocognitive challenges. Participants were recruited from a neurobehavioural research unit (NBRU) at a large hospital in Toronto, Canada. Data were analyzed thematically and with reference to the EDF.ResultsParticipants’ experiences reflected all concepts within the EDF to some extent. Difficulties with daily activities were diverse but were addressed using similar living strategies. Participants described challenges with work and social relationships resulting from neurocognitive challenges. Participants downplayed the significance of uncertainty in their lives, which they attributed to effective living strategies. Most men reported confusion regarding the link between their neurocognitive challenges and ageing. Others discussed ageing as an asset that helped with coping.ConclusionsThis is the first study to use a disability framework to examine the subjective experiences of men ageing with HIV-associated neurocognitive challenges. Findings reframe the episodic disability experienced by these individuals as being predictably linked to certain triggers. As such, support for managing neurocognitive challenges could focus on triggers that exacerbate the condition in addition to the impairments themselves. The study also describes ageing as not only a source of problems but also as an asset among men growing older with HIV.

Measuring disability experienced by adults living with HIV: assessing construct validity of the HIV Disability Questionnaire using confirmatory factor analysis

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White matter hyperintensities in relation to cognition in HIV-infected men with sustained suppressed viral load on combination antiretroviral therapy

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“…In the absence of and even alongside an eventual pharmacological remedy, psychosocial approaches are needed to improve coping with HAND's symptoms 17 . Although existing research has illuminated unique cognitive challenges amongst people aging with HIV 18 , such as a higher prevalence of cognitive impairment at an earlier age 19 than the general population and dual stigma associated with HIV and cognitive challenges 20 , psychosocial interventions have not yet been well tested for people aging with HIV and the optimal approach is unknown 21 .…”