Cognitive and Behavioral Problems Increase With ALS Disease Stage

Drs. Wicks and Albert cited a survey in which 90% of patients and caregivers reported that their doctors had not told them that cognitive or psychologic symptoms can arise in ALS. “In our experience, colleagues report keeping the information from patients in order to spare them further distress,” they said. Yet most respondents to this survey reported that they would have liked to have been informed about these symptoms.

“Educating patients and caregivers that cognitive change is a part of ALS should be no different from similar discussions to be had in multiple sclerosis, Parkinson disease, and a range of other conditions,” said Drs. Wicks and Albert. “Keeping the truth from patients and caregivers is not protective; it is paternalistic, and it is time to stop. Only by facing up to the hard truth that one of the most dreaded conditions in medicine is even worse than we previously acknowledged can we take stock, marshal our resources, and make renewed plans to defeat our common enemy.”

Suggested Reading

Crockford C, Newton J, Lonergan K, et al. ALS-specific cognitive and behavior changes associated with advancing disease stage in ALS. Neurology. 2018 Sep 12 [Epub ahead of print].

Wicks P, Albert SM. It’s time to stop saying “the mind is unaffected” in ALS. Neurology. 2018 Sep 12 [Epub ahead of print].