Jason Karlawish

A definitive and compelling book on one of today's most prevalent illnesses. In 2020, an estimated 5.8 million Americans had Alzheimer’s, and more than half a million died because of the disease and its devastating complications. 16 million caregivers are responsible for paying as much as half of the $226 billion annual costs of their care. As more people live beyond their seventies and eighties, the number of patients will rise to an estimated 13.8 million by 2025. Part case studies, part meditation on the past, present and future of the disease, The Problem of Alzheimer's traces Alzheimer’s from its beginnings to its recognition as a crisis. While it is an unambiguous account of decades of missed opportunities and our health care systems’ failures to take action, it tells the story of the biomedical breakthroughs that may allow Alzheimer’s to finally be prevented and treated by medicine and also presents an argument for how we can live with dementia: the ways patients can reclaim their autonomy and redefine their sense of self, how families can support their loved ones, and the innovative reforms we can make as a society that would give caregivers and patients better quality of life. Rich in science, history, and characters, The Problem of Alzheimer's takes us inside laboratories, patients' homes, caregivers’ support groups, progressive care communities, and Jason Karlawish's own practice at the Penn Memory Center.

How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It

The Problem of Alzheimer's

Eran Klein

Caring for persons with Alzheimer’s disease presents neurologists with ethical challenges. Some of these, such as end-of-life care or research participation, are well known and have significant overlap with challenges in other areas of medicine or other neurologic diseases, such as cancer or traumatic brain injury, while others, such as the rise of biomarker-based diagnostics, are more novel and reflect the impact of developments in the science and clinical care of Alzheimer’s disease. A thoughtful and systematic approach to these challenges, from the preclinical to the late symptomatic stage of this disease, is required and will help clinicians be better advocates and stewards of their patients. This chapter addresses a number of the most pressing ethical problems facing patients, caregivers, and clinicians during this disease, including early and presymptomatic testing, assessment of decision-making capacity for treatment or research participation, restriction of driving, remote monitoring, assisted suicide, and treatment of disruptive behaviors.

Chapter 20. Ethical issues in the neurology of aging and cognitive decline

Ethical and Legal Issues in Neurology

A shotgun misfires inside the American Fur Company store in Northern Michigan, and Alexis St. Martin's death appears imminent. It's 1822, and, as the leaders of Mackinac Island examine St. Martin's shot-riddled torso, they decide not to incur a single expense on behalf of the indentured fur trapper. They even go so far as to dismiss the attention of U.S. Army Assistant Surgeon William Beaumont, the frontier fort's only doctor. Beaumont ignores the orders and saves the young man's life. What neither the doctor nor his patient understands—yet—is that even as Beaumont's care of St. Martin continues for decades, the motives and merits of his attention are far from clear. In fact, for what he does to his patient, Beaumont will eventually stand trial and be judged. Rooted deeply in historic fact, Open Wound artfully fictionalizes the complex, lifelong relationship between Beaumont and his illiterate French Canadian patient. The young trapper's injury never completely heals, leaving a hole into his stomach that the curious doctor uses as a window to understand the mysteries of digestion. Eager to rise up from his humble origins and self-conscious that his medical training occurred as an apprentice to a rural physician rather than at an elite university, Beaumont seizes the opportunity to experiment upon his patient's stomach in order to write a book that he hopes will establish his legitimacy and secure his prosperity. As Jason Karlawish portrays him, Beaumont, always growing hungrier for more wealth and more prestige, personifies the best and worst aspects of American ambition and power.

The Tragic Obsession of Dr. William Beaumont

Open Wound

A shotgun misfires inside the American Fur Company store in Northern Michigan, and Alexis St. Martin's death appears imminent. It's 1822, and, as the leaders of Mackinac Island examine St. Martin's shot-riddled torso, they decide not to incur a single expense on behalf of the indentured fur trapper. They even go so far as to dismiss the attention of U.S. Army Assistant Surgeon William Beaumont, the frontier fort's only doctor. Beaumont ignores the orders and saves the young man's life. What neither the doctor nor his patient understands—yet—is that even as Beaumont's care of St. Martin continues for decades, the motives and merits of his attention are far from clear. In fact, for what he does to his patient, Beaumont will eventually stand trial and be judged. Rooted deeply in historic fact, Open Woundartfully fictionalizes the complex, lifelong relationship between Beaumont and his illiterate French Canadian patient. The young trapper's injury never completely heals, leaving a hole into his stomach that the curious doctor uses as a window to understand the mysteries of digestion. Eager to rise up from his humble origins and self-conscious that his medical training occurred as an apprentice to a rural physician rather than at an elite university, Beaumont seizes the opportunity to experiment upon his patient's stomach in order to write a book that he hopes will establish his legitimacy and secure his prosperity. As Jason Karlawish portrays him, Beaumont, always growing hungrier for more wealth and more prestige, personifies the best and worst aspects of American ambition and power.

Jason Karlawish

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