The ethics of telling: Alzheimer’s, diagnosis, and the power of communication

When it comes to Alzheimer’s disease, what we say – and how we say it – matters more than we might think. A new article by researchers at Baylor College of Medicine considers how something as intangible as a conversation can shape the course of this very tangible disease. At the heart of their work is a compelling question: Can the way a diagnosis is communicated affect how a patient experiences memory decline?

The article, Dilemmas in Diagnosing Alzheimer’s Disease: The Peril and Promise of Self-Fulfilling Prophecies, published in the Journal of Alzheimer’s Disease, examines the ethical and psychological dimensions of disclosing Alzheimer’s risk or diagnosis – especially in individuals with mild or no symptoms. Drawing on emerging literature in neuroscience and psychology, the authors bring attention to the potential for “self-fulfilling prophecies,” situations where expectations – from patients, caregivers or clinicians – may influence real outcomes. In Alzheimer’s care, that could mean a patient’s beliefs about their own cognitive decline might actually accelerate or delay its possible effects.

These questions feel more urgent than ever in light of recent advances in testing for the risk of Alzheimer’s using biomarkers and genetic testing and the development of new treatments like lecanemab and donanemab. More patients are being identified earlier, sometimes before symptoms begin. But with earlier detection comes ethical complexity: How much should we share – and when? How do we frame that information in a way that empowers rather than discourages? What role can caregivers play in promoting patients’ well-being?

The article calls for more research and offers a practical call to action: clinicians and caregivers alike must consider the psychological and social weight of their words. While we often focus on biological tools – scans, blood tests, and genetics – this work reminds us that the human side of medicine still holds a powerful influence.

Join the conversation in person

This commitment to thoughtful dialogue doesn’t stop at publication. These same questions will take center stage on Thursday, May 1, at a public event, A Community Update on Alzheimer’s Disease Research, hosted on the Baylor College of Medicine McNair Campus. The event is free and open to the Houston community.

You’ll hear from leading researchers and clinicians – including authors of the recent article – who will share the latest breakthroughs in diagnosis, treatment and understanding of Alzheimer’s and related dementias. Guest speaker Dr. Allan Levey, director of the Emory Alzheimer’s Disease Research Center, will join the discussion.

📅 Date: Thursday, May 1, 2025
🕛 Time: Noon – 2 p.m.
📍 Location: 7200 Cambridge St., Houston, TX 77030 (Free parking in the Blue Garage)
🔗 Register here

Space is limited, so we encourage early registration to reserve your spot. You’ll also have the chance to submit questions in advance for our speakers to address during the event.

This event is more than a research update – it’s a chance to connect science with community and to learn how we can all play a role in shaping a future where Alzheimer’s care is not just advanced but thoughtful and humane.

By Roberto Alvarado, communications specialist in the Center for Medical Ethics and Health Policy at Baylor College of Medicine

Any opinions, conclusions and recommendations expressed in this blog are those of the author and do not represent the views of Baylor College of Medicine.