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On the Brain
February 24, 2020

Standing by the Bystander

Author Affiliations
  • 1Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois
JAMA Neurol. 2020;77(6):678. doi:10.1001/jamaneurol.2020.0039

When dementia ensnares an older person, it is devastatingly unfair, but ultimately a course that onlookers—for all caregivers eventually become bystanders—must accept. But in the event that dementia claims a teenager, acceptance is almost unnatural.

He was 16 years old when he began having seizures. A sophomore in high school, a star student, he dreamt of studying law. Six years later, he laid in a hospital bed, cachectic, unresponsive, his jet-black hair an unruly mane. He had a private room with a coveted view of Central Park, which, if not for an eye mask he wore, he might have appreciated. He was sensitive to light, his mother explained, and light caused seizures. He was hospitalized for treatment of oral thrush and already uncomfortable being away from his New Jersey home.

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