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

REM Sleep Behavior Disorder as a Pathway to Dementia: If, When, How, What, and Why Should... Purpose of ReviewPeople 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.Recent FindingsNeurodegeneration 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.SummaryWe 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. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Current Sleep Medicine Reports Springer Journals

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

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Publisher
Springer Journals
Copyright
Copyright © This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply 2021
eISSN
2198-6401
DOI
10.1007/s40675-021-00206-1
Publisher site
See Article on Publisher Site

Abstract

Purpose of ReviewPeople 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.Recent FindingsNeurodegeneration 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.SummaryWe 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.

Journal

Current Sleep Medicine ReportsSpringer Journals

Published: Sep 1, 2021

Keywords: REM sleep behavior disorder; Phenoconversion; Neurodegeneration; Disclosure; Ethics; Lewy body dementia; Parkinson’s disease

References