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Discovering treatments for Alzheimer’s disease

The Strange Story of Aducanumab

On June 7, 2021, the FDA granted accelerated approval to aducanumab (Aduhelm) for the treatment of Alzheimer disease, the first approval of an Alzheimer’s drug in decades. But Karlawish didn’t celebrate the approval. Biogen’s case was based on questionable science, and yet the FDA approved Aduhelm with an overly broad label. Through a series of academic and public writings, Karlawish warned the FDA against approval, reacted to the controversial decision, and documented the resulting turmoil.

 

 

Living with cognitive impairments or the risk of them

All diseases are “bad,” or at least unpleasant. A disease that isn’t ought to prompt serious questioning about why we labeled a set of signs and symptoms a disease. Some diseases are, of course, worse than others, and of all the diseases of aging, Alzheimer’s, and other causes of dementia stand out as distinctly distressing. Why? 

Over a series of writings, Karlawish has probed narratives of the patient and caregiver experiences, and the mixed fortunes of researchers, clinicians, and policy makers’ efforts to tackle the problem of dementia (he wrote several of these as a columnist for Forbes). One of his conclusions is that early on, and relentlessly, these diseases chip away at a person’s ability to self-determine her life. Alzheimer’s is best thought of as a disease of our autonomy.

This work has also included innovative scholarship to develop novel methods to assess decisional abilities, including the ground-breaking Assessment of Capacity for Everyday Decision-making, or ACED, an instrument that assists a professional in deciding whether a person can solve an everyday functional problem, such as managing mistakes with financial matters. 

Writings on decisional capacity:

Lucidity in persons with dementia

 
 

Once upon a time, I cared little about reports of (paradoxical) lucidity in persons with dementia, and then in June 2017, the NIA invited me to a small two day conference on the topic. Slowly, but then all at once, I began to change. I decided, this is something I need to pay attention to. (Paradoxical) lucidity describes an episode of connected communication in a person who has been thought to have lost that aspect of consciousness. I place the word “paradoxical” within parentheses because of what that word means. Something is “paradoxical” because it doesn’t conform to a theory. Here, the theory is persons with advanced dementia have lost their capacity for meaningful communication. A paradox is an aberrancy that ought to be dismissed. But what if episodes of lucidity were part of the experience of advanced dementia? Well, they wouldn’t be paradoxical. Research will answer that question. With funding from the NIA, my colleagues and I are deep into a study of the minds of persons with dementia.

Whealthcare

A person living with dementia is, to one degree or another, disabled. She’s developed problems performing her routine activities of daily living. Someone (or perhaps some robot or other clever device) needs to assist her to assure she has reasonable accommodations. There are many activities of daily living — preparing a meal, taking medications, traveling from one place to another, and so on. Through these activities, we express ourselves. We pursue what we desire. We enjoy what we like. This is the essence of that over used, perhaps abused, term “quality of life.” 

For persons living with dementia, one of these activities stands out: managing finances. Problems managing finances are among the earliest signs of disabling cognitive impairments, and these problems can cause notable harms that include being a victim of abuse or exploitation, and costly mistakes. 

Whealthcare isn’t just a clever play on words. In a word, this neologism assembles a truth. Health and wealth are intertwined in a twisted circle of causes and effects. In free-market, liberal democracies such as the United States, the banking and financial services industry ought to be on the front lines of detecting cognitive impairments, monitoring them, and intervening to assist their aging clients. Whealthcare challenges society not simply to think outside the metaphorical box, but to build new boxes, or something else entirely.

 

Voting Rights

To maintain and make more perfect our union, we the people vote. The act of voting is perhaps among the most essential expressions of self-determination and being counted as person. Sadly, since the beginnings of the United States, the right to vote has been a contested right. Just 100 years have passed since women were allowed the right. Even today, it remains contested. The voting rights of persons who live in long-term care facilities, and particularly those living with cognitive impairment, are easily ignored and consistently at risk. In a series of essays and studies, Karlawish has examined why and proposed and tested solutions. 

 

Desktop Medicine

In 2010, Karlawish published a short essay in the Journal of the American Medical Association, commonly known as JAMA. He argued something revolutionary is happening in medicine. Social forces, technologies and ways of thinking about numbers and risk have converged and changed how medicine and society think about what’s a disease and therefore who’s a patient and what care she’s owed. The space where these activities unfolded is transforming from the bedside of the sick patient to the desktop of the person at risk. 

He coined the phrase “desktop medicine” to juxtapose this actuarial model of disease naming, diagnosis and treatment with the practice of “bedside medicine.” In that centuries-old practice, the patient’s narrative of his personal illness experience, often told while in bed because of illness, was the physician’s entre into diagnosis and treatment. The physician makes a diagnosis by matching the patient’s history of illness and findings from physical exam to the results of pathological studies of tissues. This practice is called “clinical pathological correlation.”

Desktop medicine replaces “clinical pathological correlation” with “clinical actuarial correlation.” Stethoscopes and reflex hammers are being replaced by fast networked computers, algorithms and biomarkers. The desktop doctor works like a kind of actuary who assesses a patient’s risks.

Hypertension, osteoporosis, diabetes. For these diseases, numbers rule how we think about our health. They offer the great promise of prevention but also the perils of prevention. We live at risk and are taken up in a vast private enterprise that effectively owns the genes, algorithms, drugs and biomarkers that define disease. 

What about our desktop medicine for the diseases of the brain?  The answers to that question reveal the opportunities and challenges of whealthcare and precision medicine for the brain.   

 

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