REM Sleep Behavior Disorder as a Pathway to Dementia: If, When, How, What, and Why Should Physicians Disclose the...

People with isolated REM (rapid eye movement) sleep behavior disorder (iRBD) have a high lifetime risk of developing a neurodegenerative disease, including dementia, but disclosure of this risk remains controversial. Herein, we summarize this controversy and provide guidance on disclosure.

Neurodegeneration risk disclosure in iRBD is controversial because of a long latency to disease onset and a lack of preventative strategies. Balancing the relevant ethical principles of beneficence, nonmaleficence, and autonomy is challenging. Although there are few data on disclosure in iRBD, evidence from discussing risk in other diseases with dementia provides some guidance.

We provide an approach to risk disclosure for patients with iRBD. Patients should be asked if they want to know about future risks. If so, disclosure should be patient centered, focusing on what might happen. Discussion should occur early to give patients time to prepare for the future and consider participating in research.