Jason Karlawish, MD, co-director of the Memory Center at the University of Pennsylvania in Philadelphia, said that the biomarker revolution has changed the way people view Alzheimer’s disease, and it has its drawbacks.
Karlawish said in an interview: “In a fairly short period of time, we have revolutionized the topics we talk about when we talk about Alzheimer’s.” Medical webpage Today. “This was actually achieved through two events: one was the discovery of biomarkers, and the other was the discovery of the idea of mild cognitive impairment.”
In the field of Alzheimer̵
This is the background of Karlawish’s new book, The problem of Alzheimer’s disease: how science, culture, and politics can turn rare diseases into crises, and what we can do. MedPage today Senior staff writer Judy George spoke with Karlawish to learn more about the complexities of Alzheimer’s disease in today’s society.
George: Let’s start with the biomarker revolution. Now, we can image amyloid and tau in people’s brains, and blood tests for Alzheimer’s disease are about to appear.
Karlawish: When I first started, patients had to have dementia to be diagnosed with Alzheimer’s disease. This is a gothic horror story. Until you die, until then, I will tell you what happened to you, and until then, this is at best a possible diagnosis.
Biomarkers make invisible things visible. But the biomarker revolution will be unchallenged. One is to push the diagnosis of Alzheimer’s disease to a less and less severe state, even an unimpaired state-unimpaired people, or at most people with mild cognitive impairment.
This undoubtedly creates opportunities for early diagnosis and treatment. But this poses real challenges for people, including identity, autonomy, and threats from stigma and the need for surveillance, thereby infringing on their privacy.
George: What kind of stigma?
Karlawish: There are three types of stigma associated with Alzheimer’s disease. There is self-stigma-the stigma that an individual feels when he is unable to do something. There is public shame-the world around them thinks less of them. The patient or the people around the family may feel stigmatized and distanced from others.
I quoted Ronald Reagan’s story in the book. Someone quoted his ambassador to the White House and Britain, Walter Annenberg, as saying that he preferred to remember that Reagan was a vigorous fellow. He didn’t want to meet with Alzheimer’s because he just “don’t care”. He was essentially saying: “I want to stay away from Ronald Reagan, I want to keep away from him”, which means I also want him to keep away from Nancy Reagan. To me, this is a very abhorrent example of stigmatization.
I call the base expression of the shame of Alzheimer’s disease zero, and I call it the word “z”-that is, we cultivate this kind of death wording before dying or living dead, making people a zombie.
George: You have mentioned that the field of Alzheimer’s disease is “a little troublesome in care and treatment.” How did this happen?
Karlawish: It contains many events. The Alzheimer’s field strives for legitimacy, and focusing on other topics besides “let us figure out how to diagnose and cure this disease” is considered an interference with this task.
When the Alzheimer’s Association was formed in 1980, there was no debate about cancer as a disease. Cancer has been known for centuries. There is no controversy about cardiovascular disease as a disease. However, in 1980, people were ignorant of the legality of Alzheimer’s disease.
We support research to find treatments, but we have not reached a consensus on how to care for patients with Alzheimer’s disease. In the long-term nursing service and support, the ideological struggle about the role of the family, the debate about the role of the state has attracted people’s attention.
In the 1990s, a political party in the United States stated that it would absolutely not increase taxes, did not expand federal programs beyond defense and other related fields, and expressed deep doubts about feminism and the creation of equal opportunities for women. Although none of these positions clearly states that people with dementia or their caregivers will be specifically harmed or otherwise harmed, they do so because they hinder national dialogue on how we should provide care.
You must build the infrastructure for care-to get long-term services and support, not just diagnosis and treatment. I think this is the basic infrastructure that enables American families to function normally, such as roads and traffic lights: we don’t ask if these are what we need.
George: The FDA will soon decide the fate of aducanumab. What do we expect from a drug like Adunazumab?
Karlawish: Aducanumab is part of the amyloid story, which is very interesting. Around the beginning of this century, research first used a very novel method to eliminate genetically modified mice with amyloid. Researchers think they may have to find new ways of working because Alzheimer’s disease will be resolved.
Well, this is 21 years later, but it has not been resolved yet, at best we have a controversial treatment. Even the most optimistic view of Adunazumab is that the drug has a certain effect on slowing the rate of progress.
One thing whispered in the meeting was “heterogeneity”-what we should really consider is not just Alzheimer’s disease, but Alzheimer’s disease disease. I think a very reasonable future is that there will be pharmacologically treatable forms instead of such abuseable forms and potentially incurable forms of Alzheimer’s disease. The story of multiple sclerosis tells us; the story of many cancers tells us.
The implication is that we do need to consider how to deal with this disease. We will not work hard to solve the problem. Relying on the cure for advanced disability and cognitive impairment caused by all causes is like planning retirement with a lottery: you may win and win, but you won’t.
George: Considering the many aspects of Alzheimer’s disease, what do we need to pay attention to next?
Karlawish: We are beginning to face great irony in the field of Alzheimer’s disease. Alzheimer’s disease has become a disease because of its relentless attack on our autonomy and self-determination. Alzheimer’s disease prevents people from living the way they want. This is what makes it completely, completely a disease with amyloid, tau and neurodegeneration.
Ironically, the transformation of biomarkers poses a threat to the autonomy we are trying to maintain. We can deal with these threats, but we must organize ourselves as a society to do this.
Our approach to this disease needs to emphasize helping people with this disease maintain autonomy and a sense of identity, even in the face of disability and cognitive impairment.
This must be our national strategy in terms of the support we provide to the people, the way we talk about diseases, and the language and images used.