Making sense of nonsense: experiences of mild cognitive impairment

Abstract

Alzheimer's disease (AD) is a stigmatised condition popularly assumed to be a death sentence for diagnosed individuals. Consequently, people with AD are often deemed incapable (and perhaps unworthy) of contributing to the social discourse surrounding their illness experience. Data from qualitative interviews with 18 people diagnosed with the potential precursor of AD known as mild cognitive impairment (MCI) are examined. Using grounded theory methods, analysis revealed overarching themes of uncertainty concerning definitions of memory loss, MCI, and AD as well as distinctions between normal ageing and dementia. While this confusion over the terminology and prognosis mirrors the lack of scientific consensus about nosology and appropriate treatment regimens, such ambiguity creates social and psychological tensions for diagnosed individuals. Arguably, participants' unequivocal fear of and subsequent desire to differentiate their experiences from Alzheimer's, however, stems from the exclusively negative social constructions of AD. Drawing from Goffman, these findings demonstrate the psychosocial impact of 'framing contests' and how 'courtesy stigma' can apply not only to associated persons but also associated conditions, such as MCI to AD. Given the underlying nosological creep - or medicalisation - of the recent diagnostic guidelines proposing two new pre-dementia stages, understanding the illness narratives of MCI is critical.