Scientific Uncertainty around Mild Cognitive Impairment Can Create Tension for Diagnosed Individuals

Mild Cognitive Impairment (MCI) is a relatively recent diagnostic category, covering a wide range of cognitive impairment that is less severe than that which meets the diagnostic criteria for dementia. MCI is a diverse category that has been associated with a wide range of biological and functional markers. In fact, there is still a good deal of dissent on the prevalence and consequences of MCI. Despite this lack of consensus on the meaning of MCI, it is increasingly seen by researchers, clinicians, and policymakers as a preclinical phase of dementia.

To help understand the experiences of individuals diagnosed with MCI, the authors examined a subset of qualitative interview data from a larger study on Alzheimer’s Disease (AD). Participants in this subset were 18 individuals who had been given a diagnosis of MCI. Interviewers ascertained a few themes common across participants about the experience of MCI.

Because similar qualitative research suggests that individuals with AD experience stigma and social disenfranchisement, the researchers explored whether or not participants experienced a similar sense of stigma, or expressed other negative social messages about AD. Participants voiced a similar view of AD as that found in the general public, focusing on the stigma-inducing aspects of the disease.

Participants connected their reports of forgetting to normal aging, and, in general, tried to resist labeling their experience as a disease. Participants were uncertain how to describe MCI and whether or not their doctors had defined the term for them. This was a source of some confusion and uncertainty for many participants, reflecting, the authors suggest, the lack of scientific consensus about the definition and course of MCI.

Authors voice concern that the “diagnostic creep of AD” may add anxiety and self-stigma to individuals diagnosed with MCI. The authors suggest that, given the broad definition and prognostic uncertainty of the MCI diagnosis, researchers and clinicians should gain an improved understanding of the experiences of individuals diagnosed with MCI, and pay increased attention to emerging lay understandings of MCI and AD.

Source:

Beard RL, and Neary TM. Making sense of nonsense: experiences of mild cognitive impairment. Sociology of Health & Illness (2013); 35(1): 140–146.

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