Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals

Richard Milne, Eline Bunnik, Ana Garcia Diaz, Edo Richard, Shirlene Badger, Dianne Gove, Jean Georges, Karine Fauria, Jose-luis Molinuevo, Katie Wells, Craig Ritchie, Carol Brayne, Joshua Grill (Editor), Allyson Rosen (Editor)

Research output: Contribution to journalArticlepeer-review


In clinical trials which target pathophysiological mechanisms associated with Alzheimer’s disease, research participants who are recruited based on biomarker test results should be informed about their increased risk of developing Alzheimer’s dementia. This paper presents the results of a qualitative focus group study of attitudes and concerns toward learning information about biomarker-based risk status among healthy research participants in the United Kingdom and Spain and people with dementia and their supporters/caregivers from countries represented in the European Working Group of People with Dementia of Alzheimer Europe. The study identified expectations related to learning risk status and preferences related to the content, quality, and follow-up of the disclosure process. The latter emphasize distinctions between risk and diagnoses, the importance of clear information about risk, and suggestions for risk reduction, as well as expectations for follow up and support. The implications of these preferences for practice are discussed. Providing details of research participants’ experience and views may serve as a guide for the development of processes for the responsible disclosure of Alzheimer’s disease biomarkers
Original languageEnglish
Pages (from-to)487-498
JournalJournal of Alzheimer's Disease
Issue number2
Early online date20 Feb 2018
Publication statusE-pub ahead of print - 20 Feb 2018

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