On the reconceptualization of Alzheimer’s disease

Abstract

In the hope of future treatments to prevent or slow down the disease, there is a strong movement towards an ever‐earlier detection of Alzheimer’s disease (AD). In conjunction with scientific developments, this has prompted a reconceptualization of AD, as a slowly progressive pathological process with a long asymptomatic phase. New concepts such as ‘preclinical’ and ‘prodromal’ AD have been introduced, raising a number of conceptual and ethical questions. We evaluate whether these new concepts are theoretically defensible, in light of theories of health and disease, and whether they should be understood as disease or as an at‐risk state. We introduce a pragmatic view on disease concepts and argue that an evaluation of the reconceptualization of AD should also take its aims and effects into account, and assess their ethical acceptability. The reconceptualization of AD is useful to coordinate research into preventive strategies, and may potentially benefit future patients. However, in the short term, early detection and labelling of ‘preclinical AD’ can potentially harm people. Since there is no treatment available and the predictive value is unclear, it may only create a group of ‘patients‐in‐waiting’ who may suffer from anxiety, uncertainty and stigmatization, but will never actually develop dementia. We conclude that only if the promise of preventive medication materializes, will the reconceptualization of AD turn out unequivocally to be for the better. Otherwise, the reconceptualization may do more harm than good.

An analytic framework for conceptualisations of disease: nine structuring questions and how some conceptualisations of Alzheimer’s disease can lead to ‘diseasisation’

“…The article agrees (to a certain extent) with the suggestion of Schermer and Richard (2019) that the IWG exemplifies older normative conceptions of disease (such as that of Nordenfelt 1987), while the NIA-AA exemplifies biological-physiological conceptions (such as that of Boorse 1977Boorse , 2014. However, it also engages with more recent NIA-AA recommendations, and argues that the conceptions proposed by both the NIA-AA and the IWG do not qualify as clear-cut examples of biological-physiological or normative conceptions of disease.…”

A Narrative Review of Alzheimer’s Disease Stigma

“…However, a systematic review on the general public's knowledge of dementia and AD found that dementia was often misconstrued as a "normal" part of aging and there was a lack of knowledge perceptions of AD patients as the "living dead", or [59]. While MCI has been proposed as a prodromal diagnosis for AD, and is useful in identifying those people who may go on to develop AD dementia, concerns arise around the potential negative impacts of labeling someone as at-risk to develop a disorder in which the current research suggests that most will never go on to develop AD.…”

“…The uncertainty around AD continues to expand as terminology related to prodromal or preclinical diagnoses and timely or early diagnoses have emerged. This results in an increase in the number of people who perceive themselves to be "patients in waiting", thus leading an MCI diagnosis to elicit the same labeling stigma associated with AD, even for patients without a full dementia due to AD diagnosis [28,59].…”

“…As the disease switches to a clinical-biological 593 model it may be possible to detect AD at a preclinical stage, before symptoms emerge. Even though 595 a biological definition could help with understand-596 ing the disease and remove the stigma of "character 597 faults", until a disease-modifying treatment or a cure is discovered, it may also increase the length of time that someone becomes defined by the disease and thus exposes them to stigma[59]. Further, under this biomarker framework, patients may never develop symptoms during their lifetime, although they may be "labeled" with AD.…”

A typology of clinical conditions

“…In the terms of the typology, positive cases of AD (i.e., those meeting the diagnostic criteria) have gone from being categories F, G, or H to being categories A, B, C, or D when asymptomatic and E, F, G, or H when symptomatic. Yet, as alluded to earlier, analyzed on the BST the asymptomatic or even prodromal stages may not be diseases at all, because the biological dysfunction may be too common, a point recognized by others (Alexopoulos & Kurz, 2015, p. 363;Shermer & Richard, 2018). Instead, they would be risk states.…”