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March 11, 2019

Preclinical Alzheimer Disease and the Dawn of the Pre-Caregiver

Author Affiliations
  • 1Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia
  • 2Leonard Davis Institute of Health Economics, Philadelphia, Pennsylvania
  • 3Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia
JAMA Neurol. 2019;76(6):631-632. doi:10.1001/jamaneurol.2019.0165

A couple recently came to our memory center for a research visit. The husband is a participant in a clinical trial evaluating the efficacy of a drug to prevent the onset of dementia in cognitively unimpaired persons with elevated brain amyloid, an Alzheimer disease (AD) biomarker. In the course of the visit, the man’s wife—who is also his study partner—spoke candidly. She stated that her husband was fine but that she was not doing well. Further inquiry revealed that while he was tolerating the study drug and pleased to be involved in research, she was haunted by her knowledge of his brain amyloid status and troubled by the prospect of becoming his caregiver.

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