Do I Have Symptoms of Dementia: A Discursive Study of Awareness and Shame Among People With Advanced Dementia

This study explores the narrated experiences of individuals with advanced stages of late-onset dementia, focusing on their diagnosis awareness. Such framing is motivated by 2 reasons. Firstly, there is a lack of consensus regarding the prevalence of anosognosia among people with dementia. Secondly, research on anosognosia often neglects to address the important issues of shame and stigma associated with receiving a dementia diagnosis.

For this qualitative study, a total of 27 participants ranging in age from 66 to 94 were involved. The data collected were analyzed using textual-oriented discourse analysis.

Our findings indicated that individuals with dementia struggled to comprehend the medical terminology used to describe their experiences within biomedical standards. The interviewees utilized 5 negative discourses on dementia, which shaped their attitudes toward the condition and people diagnosed with it. These discourses depicted dementia as an illness, negative aging, a devaluation, a burden, and a life tragedy. Moreover, study participants did not outright reject the diagnosis but rather negotiated its acceptance within the context of shame associated with dementia.

The concept of anosognosia can serve as a mechanism of social control and stigmatization of people with dementia within the dominant biomedical discourse.