Communicating risk status for a complex disease such as Alzheimer’s can be challenging. Should providers disclose genetic screening and biomarkers risk results that are solely predictive to their patients? Even if a patient cannot use this information to seek further treatment? Are the potential benefits of seeking early treatment once the initial signs of the disease worth any related worries or fears of the onset of cognitive decline and impairments? 

Although an estimated 50 to 90 percent of people reportedly are interested in knowing the results for their risk of developing dementia, this percentage decreases when results are purely predictive, rather than probabilistic. The current biomarker screening is just that — predictive of a potential onset of the disease within a 20-year spread due to an increase in amyloid levels. Without the ability to truly diagnose the disease in these otherwise healthy individuals, there would be no associated course of treatment to begin after the testing occurs, leaving the individuals with the knowledge that they might have a chance of someday developing Alzheimer’s at some point in their life. 

However, knowing the results can also have immense benefits for individuals with a high predicted risk for the disease. They will likely be more cognizant of the early signs of Alzheimer’s, including difficulty remembering recent events, inability to plan or solve problems, and even mood and personality changes. Being aware of a decline in mental capabilities could help aide in the early stages of treatment and would result in a prolonged healthy state for the individuals. Would this make up for the incessant worrying over the potential onset? 

While there are positives and negatives to participating in genetic screenings as a tool for early detection of Alzheimer’s, the only way to find out what is best for the patient is to talk to the patients directly. As published in an ethics review in the Journal of Alzheimer’s Disease, patients’ opinions can vary drastically based on their current familiarity and relatability with the disease itself — whether they know someone or have a family member with the disease will severely impact how important they view finding predictive risk results. 

As a healthcare provider, knowing how and when to suggest genetic testing and biomarker predictive testing is essential to effectively disclose these results to patients. Interested in learning more about what actual patients have to say while also earning continuing education credit? Find out here, courtesy of the Journal of Alzheimer’s Disease.