Description
Background: The NIA-AA research framework proposes a purely biological definition of Alzheimer’s Disease (AD). This implies that AD can be diagnosed based on biomarker abnormalities, regardless of clinical symptoms and signs. While this brings opportunities, it also raises challenges. We aimed to provide an overview of considerations regarding the disclosure of AD pathology before the onset of dementia.Methods: We conducted a systematic literature review according to PRISMA guidelines by searching PubMed (on 10 December 2020) for publications on conveying AD biomarker results to individuals without dementia. Our query combined variations on the terms Alzheimer’s Disease, disclosure or diagnosis, preclinical or prodromal, and biomarkers. Two reviewers independently screened the resulting 3185 titles and abstracts for eligibility and examined 129 full text records for relevance. We included theoretical articles in English, on communicating amyloid and/or tau results to individuals with mild cognitive impairment, subjective cognitive decline or normal cognition. MAXQDA-software was used for inductive data analysis.
Results: We included 25 publications. From these we extracted 26 unique considerations, which we grouped according to their primary relevance to a clinical, personal, or societal context. Clinical considerations included (lack of) validity, utility, and disclosure protocols. Personal considerations covered psychological and behavioral implications, as well as the right to (not) know. Finally, societal considerations comprised the risk of misconception, stigmatization, and discrimination. Overall, views were heterogeneous, often contradictory and tended to focus on adverse effects.
Conclusion: Perspectives on a diagnosis of AD before dementia vary widely. Empirical research is urgently required, especially on harms and benefits for individuals and society, taking perspectives of medical professionals, patients and the public into account. Our findings provide a starting point for clinicians to communicate about a biomarker-based diagnosis with patients, which becomes increasingly important in light of the conditional approval of a first disease-modifying drug for AD.
| Period | 1 Dec 2021 |
|---|---|
| Event title | Alzheimer Europe Conference |
| Event type | Conference |