Testing for Alzheimer Disease Biomarkers and Disclosing Results Across the Disease Continuum

Abstract

Three pathologic processes are characteristic of Alzheimer disease (AD): β-amyloid, hyperphosphorylated tau, and neurodegeneration. Our understanding of AD is undergoing a transformation due to our ability to measure biomarkers of these processes across different stages of cognitive impairment. There is growing interest in using AD biomarker tests in care and research and, with this, a growing need for guidance on how to return these sensitive results to patients and participants. Here, we propose a 5-step approach informed by clinical and research experience designing and implementing AD biomarker disclosure processes, extant evidence describing how individuals react to AD biomarker information, ethics, law, and the literature on breaking bad news. The clinician should (1) determine the appropriateness of AD biomarker testing and return of results for the particular patient or research participant. If testing is appropriate, the next steps are to (2) provide pretest education and seek consent for testing from the individual and their support person, (3) administer testing, (4) return the results to the individual and their support person, and (5) follow-up to promote the recipient's well-being.

Figure. The 5-Step AD Biomarker Disclosure Process

This disclosure process is to be led by a knowledgeable clinician and embedded within the individual's ongoing participation in research or receipt of care, which is understood to include cognitive testing and capacity assessment. AD = Alzheimer disease.