DEMENTIA IN SOCIETY
Jason Karlawish’s new book examines “The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It” Dr Jason Karlawish, co-director of the Penn Memory Center at the University of Pennsylvania in Philadelphia, USA, spoke to Alzheimer Europe about his new book, which takes us inside laboratories, the homes of people living with dementia, carers’ support groups, progressive care communities, and Dr Karlawish’s own practice at the Penn Memory Center. Why and when did you decide to write “The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease into a Crisis and What We Can Do About It”, and to take such a unique approach, combining your areas of expertise as a researcher, medical doctor, ethicist and storyteller? For many, many years, more than ten, I’d been turning over the idea of “a book about Alzheimer’s.” About five years ago, I started writing in earnest. The stories of my patients got me going. I noticed something. My clinic notes were becoming more and more vivid, sort of sketches of stories. Each story was quite ordinary and deeply personal and unique, but I began to perceive something common: all were morally intense. They were stories about people struggling to live with a disease that early and relentlessly chips away at the very foundations of personhood: identity, privacy and ability to self-determine one’s life. Alzheimer’s, I came to see, is a disease of a cherished but, in the arc of human history, a relatively young value. That is the value of autonomy. Not until the mid of the last century did most cultures come to accept that all adults ought to be allowed to determine their selves, to become a person. Matters of status such as wealth or birth order, or categories
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such as gender or race should not influence a person’s right to live as he or she chooses. Alzheimer’s takes this away. That’s what my patients and their caregivers were telling me. The doctor listened, the writer wrote and the ethicist analysed. I also came to understand how I was practicing medicine in a revolutionary time. What my colleagues and I called Alzheimer’s disease and understood as a clinical disease was undergoing a revision. A person’s signs and symptoms – those stories of troubles with memory that cause problems with everyday life – they were no longer the foundation of the definition of the disease. Instead, the disease was being redefined by the seemingly objective measures of pathophysiology we call biomarkers.
Jason Karlawish
problems and living at the risk for developing those problems. The full narrative of the book came together when I realised the essential role of society in determining what this disease is and how we care for patients. The lives of patients and their caregivers are determined by the exercise of power and persuasion, or, in a word, politics. History shows how all too often, politics amplified their sufferings and losses. Simply put, the story of the 20th century is how science and culture turned what was once a rare disease into a very common disease, and then, quite quickly, politics made it a crisis. You draw on the experiences of your patients and their families, sharing their struggles. Why was this important to you and were there any of their stories which particularly marked you?
The full narrative of the book came together when I realised the essential role of society in determining what this disease is and how we care for patients.”
I’m drawn to stories because they make sense of the myriad of sometimes contradictory facts. The stories that particularly marked me were those of persons who struggled to receive a coherent answer to a very simple question: “Doctor, what’s wrong with me?” In medicine, we say they are seeking a diagnosis. And then there were the stories of persons struggling to find care. They begin with challenges as fundamental as lacking even a language to talk about what they need and why they need it.
I wanted to tell this story. I wanted to show how it would transform how we live with and make sense of disabling cognitive
When I explain to a caregiver how a person living with dementia needs a day that is safe, social and engaged, and how a caregiver is the
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