The biomarker revolution has changed the way people 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.
“In 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 due 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. It draws battle lines over healing versus care. More than six million Americans live with Alzheimer’s and many more provide unpaid care to patients. And decades after scientists first realized that it could clean the brain of amyloid plaques – a hallmark of the disease, along with your confusion – people with Alzheimer’s do not have effective treatments.
This is the background for Karlawish’s new book, The Alzheimer’s Problem: How Science, Culture, and Politics Have Turned a Rare Disease into a Crisis, and What We Can Do About It. MedPage Today lead 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. Now we can imagine amyloid and tau in people’s brains, and blood tests for Alzheimer’s are on the horizon.
Karlawish: When we 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 made visible what was invisible. But the biomarker revolution will not be without its challenges. One is to push the diagnosis of Alzheimer’s into lighter and milder states and even unfounded – people who are not affected or at most are slightly cognitively affected.
This certainly creates opportunities for early diagnosis and treatment. But it presents real challenges to people in terms of their identity, autonomy and threats that come from stigma and the need to monitor and therefore intrude on their privacy.
George: What kind of stigma?
Karlawish: There are three types of stigma with Alzheimer’s disease. There is the stigma of self – the stigma that an individual feels when he cannot do things. There is a public stigma – the world around them thinks less of them. And there is the stigma that people around the patient or family members can feel, a distance from others.
I’m quoting a story in the book about Ronald Reagan. His ambassador to the White House and Britain, Walter Annenberg, was quoted as saying that he preferred to remember Reagan as a strong man. He didn’t want to see him with Alzheimer’s because he was just “coming out of it.” In essence, he said, “I stay away from Ronald Reagan, I distance myself from him,” which meant he distanced himself from Nancy Reagan, I suppose. For me, this is an extremely stigmatized example.
The zero point of the expression of stigma in Alzheimer’s disease is what I call the word “z” – namely, that we cultivate this rhetoric of death before death or the living dead, that people become zombies.
George: You mentioned that the field of Alzheimer’s has a “strange problem of care versus healing.” How did this come about?
Karlawish: It is wrapped in a series of events. The Alzheimer’s field has struggled to gain legitimacy, and focusing on topics other than “figuring out how to diagnose and cure this disease” has been seen as a distraction from that mission.
When the Alzheimer’s Association was founded in 1980, there was no debate that cancer is a disease; Cancer has been recognized for centuries. There was no debate that cardiovascular disease was a disease. However, in 1980, there was widespread ignorance about the legitimacy of Alzheimer’s disease.
We support research to find a cure, but we do not agree on how to care for people with Alzheimer’s disease. Care has become embroiled in controversial political debates over the role of the state for long-term care and support services and ideological battles over the role of the family.
In the 1990s, a party in America said there was no tax increase, no expansion of federal programs beyond defense and some related things, and was deeply skeptical of feminism and created equal opportunities for women. While none of these positions were articulated to specifically harm or otherwise harm people living with dementia or their carers, they did just that because they thwarted a coherent national conversation about how they should be treated. to provide care.
You need to build infrastructure for care – for long-term services and assistance, not just for diagnosis and treatment. I think it’s a basic infrastructure that allows the American family to function, like roads and traffic lights: we don’t question them as what we need.
George: The FDA will soon decide the fate of adducanumab. What can we expect from drugs like addanumab?
Karlawish: Aducanumab is part of the amyloid story, which is interesting. Right around the turn of the century, studies first appeared using a very new method that eliminated transgenic amyloid mice. The researchers thought they should find a new line of work because Alzheimer’s would be solved.
Well, here we are 21 years later and it is not resolved and, at best, we have a controversial treatment. Even the most optimistic approach to addanumab is that the drug has a certain effect on slowing the rate of progression.
One word whispered at meetings is “heterogeneity” – that we should really think about this not so much Alzheimer’s disease as Alzheimer’s. disease. I think a very plausible future is that there will be drug forms, not so drug forms and potentially untreatable forms of Alzheimer’s. Stories of multiple sclerosis tell us this; the stories of many types of cancer tell us that.
The implication is that we need to think about how we will live with this disease. We’re not going to get out of trouble. Providing a remedy for all the causes of the debilitating cognitive impairments of later life is like planning a retirement with lottery tickets: you might win and win big, but chances are not.
George: Given the many dimensions of Alzheimer’s, what should we look for next?
Karlawish: We are beginning to face an enormous irony in the field of Alzheimer’s. The reason Alzheimer’s is a disease is because of its relentless assault on our autonomy and self-determination. Alzheimer’s prevents people from living their lives the way they want to live their lives. This is what makes a disease, fully, completely – along with amyloid, tau and neurodegeneration.
The irony is that the transformation of the biomarker poses threats to the same autonomy we are trying to maintain. We can address these threats, but we must organize ourselves as a society to do so.
Our approach to treating this disease must emphasize that we help people living with it to maintain their autonomy and identity, even in the face of disabling cognitive impairments.
This must be the way we frame our strategy as a country in terms of the support we provide to people, the way we talk about the disease and the language and images we use.