Lost the Feel for the Game: Meanings of Onset and Diagnosis of AIDS Dementia for Significant Others

The onset and diagnosis of AIDS dementia marks a new dimension to living with HIV, an aspect few imagine or are equipped for. As a result of the profound changes that AIDS dementia makes to the ways the person with HIV acts, the life of significant others is similarly altered. Drawing on the metaphor of “the game ” from Bourdieu’s work on habitus, I explore how the onset and subsequent diagnosis of AIDS dementia comes to signify for significant others a moment in which life is permanently altered, whereby they no longer have the feel for the game. With AIDS dementia, life (“the game”) is altered. Significant others feel that AIDS dementia is not a normal or acceptable AIDS illness: fears are contested, secrets managed and disclosed, and relations strained. This change in play further marginalizes significant others, and increases their sense of alterity from others living with and affected by HIV alone, because dementia is not the socially acceptable way of being ill with HIV. Keywords autoethnography; caregivers; dementia; ethnography; HIV/AIDS; relationships Sitting across from us behind his desk, the doctor said, “You’ve got dementia.... “Andrew asked, “What does that mean? ” The doctor very unfortu