Ambivalent anticipation: How people with Alzheimer’s disease value diagnosis in current and envisioned future practices

Abstract

Emergent biomarkers for Alzheimer's disease (AD) are expected to provide earlier and more precise diagnoses. However, even if biomarkers live up to these expectations, it cannot be taken for granted that patients actually would value an earlier and more precise AD diagnosis. Based on an interview study, we aim to give more insight into the value of an AD diagnosis for patients, in existing as well as future practices, by describing how a diagnosis enables or may enable knowing, foreseeing, and acting in relation to one's illness. Our findings show that how people with AD value a diagnosis is not only characterised by great variety, as previous studies have shown, but also by profound ambivalence for the individual. With lack of treatment and poor prognostics as the status quo, this ambivalence and the way people deal with it are particularly linked to the far-from-straightforward capacity of an AD diagnosis to support anticipation of the future. We argue that in otherwise unchanged practices the envisioned future biomarker-based diagnostics are unlikely to reduce the ambivalence about receiving an AD diagnosis and, in particular, the challenges of anticipation that it entails. Rather, biomarker-based innovations may even reinforce some of the main issues involved.