It is time to share Alzheimer biomarker results in dementia with Lewy bodies.

Abstract

There are increasing calls for sharing individual biomarker results with participants in dementia research. No studies investigate returning Alzheimer's disease (AD) biomarker results to individuals with syndromic dementia with Lewy bodies (DLB) even though most of these individuals have both pathologies. This perspective argues that AD biomarkers are valid, interpretable, and actionable, particularly relating to expected prognosis and treatment effects, in people with DLB. Thus, there is an ethical imperative to study AD biomarker result sharing in these patients. This will require revising current disclosure practices. Areas of need include unique pre- and post-test education and careful assessment of the readiness to receive results and post-result responses in people with DLB given the frequency of neuropsychiatric symptoms in this group. Studying responses to sharing AD biomarkers in people with DLB will also inform other dementia settings (e.g., returning synuclein results to individuals with syndromic AD) and neurodegenerative diseases more broadly.

Highlights: There are increasing calls for biomarker result sharing in dementia research.No processes exist to guide result sharing in dementia with Lewy bodies (DLB).Alzheimer biomarker results in DLB are valid, interpretable, and actionable.Research is needed on the methods and effects of sharing with people with DLB.Research is needed for sharing evidence of co-pathology across neurodegenerations.