Preclinical Alzheimer Disease and the Dawn of the Pre-Caregiver image

JAMA Neurology , March 11, 2019
by Emily A. Largent (Student Fellow Alumna) and Jason Karlawish

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From the paper: 

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.

Two lines of innovation—one legal and one scientific—will soon converge to change the lived experience of AD for patients and their families. Federal and state laws are improving clinical care for AD by promoting care planning and care partner engagement. At the same time, our understanding of AD as a clinicopathologic state, defined by observable signs and symptoms, is evolving toward a biomarker-based understanding. As a result, AD diagnosis will soon occur in a preclinical stage before the onset of symptoms, family members will be engaged much earlier in the course of disease, and conversations like the one described above will become increasingly frequent.

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