The biomarker revolution has changed the way we view Alzheimer’s disease, and that has its drawbacks, says Jason Karlawish, MD, co-director of the Penn Memory Center at the University of Pennsylvania in Philadelphia.
“Over a fairly short period of time, we’ve had a revolutionary redefinition of what we’re talking about when we talk about Alzheimer’s,” Karlawish said in an interview with MedPage Today. “This is really possible thanks to two events: one is the discovery of biomarkers and the other is the discovery of the idea of mild cognitive impairment.”
In the field of Alzheimer’s disease, science often clashes with politics. Battle lines are drawn about care and care. More than six million Americans live with Alzheimer’s and many more offer unpaid patient care. And decades after scientists first realized they could clean the brain of amyloid plaques (a hallmark of the disease, along with tau messes), people with Alzheimer’s have no effective treatments.
This is the backdrop for Karlawish’s new book, The problem of Alzheimer’s: how science, culture and politics turned a rare disease into a crisis and what we can do about it. MedPage today chief staff writer Judy George spoke with Karlawish to learn more about the complexity of Alzheimer’s disease in today’s society.
George: Let’s start with the biomarker revolution. We can now imagine amyloid and tau in people’s brains, and blood tests for Alzheimer’s are on the horizon.
Karlawish: When I started, patients had to have dementia to be diagnosed with Alzheimer’s. It was a kind of Gothic horror story; I couldn’t tell you what happened to you until you died and until then it was, at most, a probable diagnosis.
Biomarkers have made visible what was invisible. But the biomarker revolution will not be without challenges. One is to push the diagnosis of Alzheimer’s to states of being softer and even more intact: people who are not impaired or, at most, have mild cognitive impairment.
This certainly creates opportunities for early diagnosis and treatment. But it presents real challenges for people in terms of their identity, autonomy, and threats that come from stigma and the need for supervision and therefore intrusion into their privacy.
George: What kind of stigma?
Karlawish: There are three types of stigma with Alzheimer’s disease. There is a personal stigma: the stigma that a person feels when he cannot do things. There is public stigma: the world around them thinks less of it. And there is a stigma that can be felt by the people around the patient or relatives, a distance from others.
I quote a story in the book about Ronald Reagan. His ambassador to the White House and the United Kingdom, Walter Annenberg, was quoted as saying he preferred to remember Reagan as a vigorous comrade. She didn’t want to see him with Alzheimer’s because he was just “out of it.” Essentially, he said, “I stay away from Ronald Reagan, I distance myself from him,” which meant he also distanced himself from Nancy Reagan, I guess. To me, this is a very poignant example of stigma.
The zero point of stigma expression in Alzheimer’s disease is what I call the word “z,” meaning that we cultivate this rhetoric of death before death or the living dead, that people they become zombies.
George: You mentioned that the field of Alzheimer’s has a “strange cure versus cure disorder.” How did this come about?
Karlawish: He is involved in various events. The Alzheimer’s camp struggled to gain legitimacy and focus on issues other than “finding out how to diagnose and cure this disease” was perceived as a distraction from this mission.
When the Alzheimer’s Association was founded in 1980, it was not debated that cancer was a disease; cancer had been recognized for centuries. It was not debated that cardiovascular disease was a disease. However, in 1980, there was immense ignorance about the legitimacy of Alzheimer’s as a disease.
We support research to discover a cure, but we disagree on how to care for people with Alzheimer’s disease. Attention has been caught up in debatable political conflicts over the role of the state for long-term care services and ideological support and battles over the role of the family.
In the 1990s, a party in the United States said absolutely no tax increases, no expansion of federal programs beyond advocacy and some related things, and had a deep skepticism about feminism and the creation of equality. of opportunities for women. While none of these positions were articulated to specifically hurt or otherwise harm people living with dementia or their caregivers, they did so precisely because they thwarted a coherent national conversation about how we should provide care. .
You need to build infrastructure for care: long-term services and support, not just diagnosis and treatment. I consider it a basic infrastructure that allows the American family to function, such as roads and traffic lights – let’s not question that they are what we need.
George: The FDA will soon decide the fate of aducanumab. What can we expect from drugs like aducanumab?
Karlawish: Aducanumab is part of the history of amyloid, which is interesting. Towards the turn of the century, studies first appeared with a very new method that cleaned transgenic amyloid mice. The researchers thought they might have to find a new line of work for Alzheimer’s to resolve.
Well, here we are 21 years later and it is unresolved and at best we have a controversial treatment. Even the most optimistic acquisition of aducanumab is that the drug has some effect in slowing the rate of progression.
One word that whispers at meetings is “heterogeneity,” which we really should think about not so much in Alzheimer’s disease, but in Alzheimer’s. diseases. I think a very plausible future is that there will be drugable forms, not so drugged forms, and potentially untreatable forms of Alzheimer’s. Stories of multiple sclerosis tell us this; the stories of many cancers tell us.
The implication is that we really need to think about how we will live with this disease. We are not going to drug our way out of the problem. Having a cure for all the causes of late-life disabling cognitive impairments is like planning retirement with lottery tickets: you can win and win a lot, but chances are you don’t.
George: Given the many dimensions of Alzheimer’s, what should we pay attention to next?
Karlawish: We begin to face enormous irony in the field of Alzheimer’s. The reason why Alzheimer’s is a disease is due to its relentless attack on our autonomy and self-determination. Alzheimer’s prevents people from living their lives the way they want to live. This is what makes it a disease altogether, along with amyloid, tau and neurodegeneration.
The irony is that the transformation of the biomarker jeopardizes the very autonomy we try to preserve. We can deal with these threats, but we must organize ourselves as a society to do so.
Our approach to treating this disease must emphasize helping people living it maintain autonomy and identity, even in the face of disabling cognitive disabilities.
This must be the way we frame our strategy as a country in terms of the support we provide to the people, the way we talk about the disease and the language and images we use.