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 predementia stages, understanding the illness narratives of MCI is critical.

Communicating mild cognitive impairment diagnoses with and without amyloid imaging

“…The ambiguity and uncertainty of the diagnosis [30] cause many patients to desire more information about their condition, such as how it differs from “normal” aging and how it differs from dementia [31]. Amyloid imaging may allow a physician to give the patient additional information about potential causes of their MCI, improve prognostic information, and reduce the ambiguity and uncertainty associated with the diagnosis [29, 30, 32–34]. Although some patients may want this information, others may express a desire “not to know” [35].…”

Patient and caregiver reactions to clinical amyloid imaging

“…An expert Amyloid Imaging Taskforce sponsored by the Alzheimer’s Association and the Society of Nuclear Medicine and Molecular Imaging developed Appropriate Use Criteria for amyloid PET, which outlined patients with persistent or progressive mild cognitive impairment (MCI), patients with possible AD due to atypical or mixed etiology presentation, and patients with young-onset dementia as appropriate for amyloid imaging [11]. Amyloid imaging may identify MCI patients at increased risk for progression to AD dementia [12, 13] and reduce ambiguity from a clinical diagnosis that is associated with substantial uncertainty [14–16]. It may help clinicians distinguish AD from other causes of dementia, especially in patients with atypical presentations [17, 18].…”

Participation in physical and social activities among home-dwelling persons with dementia – experiences of next of kin

“…The findings showed that the informants, as next of kin to dementia sufferers in an early stage of the disease, experienced life as a burden. This was the case because of, for example, feelings of isolation and worries about the future, which is also a known result from other studies 1,3,4. The findings highlight that next of kin to dementia sufferers need relief6 and support 4.…”

“…This can be explained by the fact that there is no cure for dementia2 and the knowledge that the disease is going to get worse, both of which give a feeling of fear to those with dementia3 and to their next of kin. Because of uncertainty about the prognosis and the future,4 next of kin need information and support during the disease process.…”