June 1st is the start of Brain Health Awareness Month and WAM decided to interview Dr. Jason Karlawish, author of The Problem of Alzheimer’s, about the history of Alzheimer’s and what it means for families everywhere.
Read WAM’s Q&A with Dr. Jason Karlawish below.
WAM: You are a doctor, but your new book, The Problem with Alzheimer’s, is less a look at Alzheimer’s through a medical lens than a fascinating cultural, social and political viewpoint. What is it about the nature of the disease that made you take on this very large perspective?
Dr. Karlawish: As common as Alzheimer’s is – an estimated 5 to 6 million Americans have it and 13.8 million by 2050 – it is a very unusual disease. I say “unusual” because unlike all the many other diseases of adulthood, this one distinctly and early on relentlessly chips away at a person’s ability to self-determine her life, to live as she chooses. Cognitive problems such as with memory, multi-tasking and putting together a sentence cause troubles making decisions about how to live one’s life, such as picking out a restaurant for dinner, traveling to it and then ordering off the menu. Other people have to help complete these seemingly ordinary tasks. We call them caregivers, often they’re adult children and typically they’re women. So this isn’t just a brain disease. It’s a disease of our self-determination, autonomy, and the family. What struck me as I wrote this book is how these are enmeshed in culture and politics and played out in society. To understand Alzheimer’s, you have to dive into the stories of the 20th century.
WAM: You say that Alzheimer’s is in many ways a national crisis we have created ourselves. Where did we go wrong to end up with a disease that has the capacity to bankrupt so many millions of people on every level—physically, financially and spiritually?
Dr. Karlawish: Once upon a time, Alzheimer’s disease was a rare disease, and then science and culture transformed it into a common disease. Two events happened in the last quarter of the 20th century. First, science showed that persons with “senile dementia” didn’t have extreme aging but distinct and visible pathologies in their brain. Second, culture and society finally recognized that autonomy is a universal value for all adults – men, women, person of color, LGBTQ – and so to lose that is harmful. Put these point together: if something we can see in the brain is causing the loss of autonomy, we ought to call it a disease, and then set out to diagnose and treat it. So why the crisis? At the same time as this revolution, a political revolution was unfolding as well. In 1980, Ronald Reagan was elected president. His message was the federal government is the problem. He famously said that the nine most frightening words in the English language are “I’m here from the government and I’m here to help.” This was not a political philosophy to champion the expansion of Medicare to cover long-term care services and supports, train a workforce or grow a billion-dollar research infrastructure. The result? The American family was left to figure out Alzheimer’s disease on its own.
WAM: What do we have to do now to fix this crisis–and do you come at your suggestions wearing your hat of doctor and or medical ethicist?
Dr. Karlawish: Both hats. Because fully tackling the problem of Alzheimer’s requires seeing this as a humanitarian problem. This kind of problem requires integrating excellent biomedical, political, economic and cultural efforts. Six stand out. (1) a national long term care social insurance program to reduce the devastating financial risks facing the American family; (2) a network of dementia centers to serve as the hubs for diagnosis, treatment and especially training the workforce; (3) all hospitals and health care systems must be dementia friendly with attention to delirium reduction and multi-disciplinary teams to care for older adults; (4) use the internet of things and artificial intelligence to create a network to detect and monitor our aging brains as we live our lives; (5) discover blood tests and brain scans together with effective drugs to transform the diagnosis and treatment to resemble what we do for cardiovascular disease; (6) revise our laws and culture to eliminate the risks of discrimination and stigmas in the workplace and community.
WAM: You believe a key component in creating and perpetuating stigma around Alzheimer’s is the language we use when talking about the disease. Can you give us an example of one thing we could change in how we speak about Alzheimer’s that might help?
Dr. Karlawish: Once upon a time, but not too long ago, I referred to my patients as “demented,” as in “Mr. Karlawish is demented.” This adjectival referent collapsed what was unique about the person into a label of a dreaded disease. I came to see how this reduced the person to a diagnosis. I’d never say, “Mr. Karlawish is cancer” or hypertension. So I change my language. Now, I say “he’s a person living with dementia” or mild cognitive impairment. This turning in my language in turn has led me to change how I think about persons with this disease. I’m keen to tease out the mind and how it is interconnected with others, such as the mind of their caregiver.
WAM: When we spoke, you said that women have played a central role in the story of Alzheimer’s. At WAM, we focus on women because 2/3 brains that develop Alzheimer’s belong to women, as do 2 out of 3 caregivers. But you see women as woven into the story of Alzheimer’s in even more ways. Can you expand on that?
Dr. Karlawish: The late 20th-century history of Alzheimer’s disease is the history of women. Their political and cultural struggle to gain the rights and freedoms owed to adults animates why this disease is a disease. It takes away self-determination. For a woman, Alzheimer’s is like that 1970’s admissions officer who says “we don’t think a woman can be doctor or lawyer.” Women are at ground zero for the caregiving role, advocating for the rights and interests of person who can’t do so for themselves. They founded the organization that would come to be known as the Alzheimer’s Association. One of the forgotten heroes of that movement was Hilda Pridgeon. Her story is the story of the American woman who rises up from a world that says to her “no, you can’t” beginning when she was denied the valedictorian spot at her high school, to saying back “Yes, I can.” She persisted to raise her family, care for her disabled husband, make a career and to help others so that they did not suffer as she and her family did.
WAM: Do you see any basis for hope in the story of Alzheimer’s, and if so, where?
Dr. Karlawish: I do. I see great promise for tests of the blood or the brain that will identify persons at heightened risk of disabling cognitive problems and treatments that slow down the onset and pace of those problems. I’m also optimistic that the events of the awful pandemic have taught all America – left, right and center — the necessity of care and caregiving. For the past year, we all lived a surreal life. As we struggled to find help, support, and companionship, we were like persons with dementia and their caregivers who have faced these struggles for decades. The lockouts of visitors to residential long-term care and hospitals showed that many family members who visit aren’t just dropping off some magazines and saying “hi.” Instead, they’re providing care, very personal care. America is woke to caregiving. Now, we need to support them. The spotlight is on Washington, D.C.
Learn more about Dr. Jason Karlawish and his new book HERE.
You can purchase The Problem of Alzheimer’s HERE.