Jason Karlawish, MD is a Professor of Medicine, Neurology, and Medical Ethics and Health Policy at the University of Pennsylvania Perelman School of Medicine. He is Co-Associate Director of the Alzheimer’s Disease Research Center and Co-Director of the Penn Memory Center, where he cares for patients and their families. Dr. Karlawish directs the Penn Program on Precision Medicine for the Brain (P3MB). The program assembles scholars in anthropology, law, nursing, philosophy, psychology, and public policy to investigate how neurodegenerative diseases impact a person’s capacity to self-determine their life and to discover conceptual and practical interventions to enhance self-determination. Studies have addressed the interrelated challenges created by impairments in decisional capacity and the sometimes hidden-in-plain site social and policy barriers to exercising decision-making.
This work includes the development and testing of “mobile polling” in residential long-term care settings to foster the right to vote and the development of the Assessment of Capacity for Everyday Decision making, or ACED, a tool to assist in assessing decision-making skills. Responding to transformations of the definition and staging of Alzheimer’s disease, P3MB has developed biomarker disclosure practices and discovered insights into how learning a biomarker result impacts both patients and their loved ones. Work recasting dementia as a progressive disorder of consciousness has opened up a host of innovations in how we can live with and care for people with these diseases, such as refining the legal concept of supported decision-making to apply to the care of persons living with neurodegenerative diseases.