It’s funny what sticks with you after someone is gone. When I was a bored teenager reading Shakespeare in English class, many years ago now, I remember my dad lecturing me about dramatic irony – the way the bard turned his characters’ greatest strengths into their greatest weaknesses. My father was a philosophy professor, with a professor’s tendency to pontificate, and he would use his daughters as an outlet if no more willing subject presented itself. The memory of his monologue sat, coiled somewhere in the back of my brain, until years later, when my father was diagnosed with early-onset dementia. The philosopher lives by his brain. For my father, his brain was what wound up killing him too.
I followed my parents into academia by becoming a data librarian employed by a medical school. In my role, I follow the news of research fraud cases across the country – often fertile ground for examples when teaching on the consequences of poor data management.
However, the recent parade of prominent Alzheimer’s researchers whose work has been retracted after credible accusations of research misconduct or fraud – Marc Tessier-Lavigne, Sylvain Lesne, Hoau-Yan Wang, Eliezer Masliah, Berislav Zlokovic, and Domenico Pratico – has often left me so angry and upset that I have to skip the articles about their cases. I’m sure these men, safe in their labs, had some tidy excuses for what they were doing: their experiment had failed, but science would ultimately bear them out… or whatever. What they were really doing, whether they realised it or not, is taking advantage of a million small family tragedies like mine by peddling false hope to the ill or capitalising on the fears of those who know they have a genetic likelihood to be stricken with dementia.
You can see the rationalisation of bad science at work in a New York Times article on the fraught clinical trials for Leqembi, which caused sometimes fatal side effects for participants:
[M]any researchers argue that the risk of side effects is a small price to pay for slowing, even temporarily, a devastating disease that afflicts nearly seven million Americans.
Bogdanich W, Kessler C. What Drugmakers Did Not Tell Volunteers in Alzheimer’s Trials. The New York Times, October 23, 2024. Accessed December 17, 2024.
“People are robbed of everything that makes us human,” said Dr. Howard Fillit, a professor at the Icahn School of Medicine at Mount Sinai in New York and a prominent voice in Alzheimer’s research. “Can’t dress yourselves. Can’t go to the bathroom. Forget how to walk. Forget how to swallow. They’re like infants in a human body.”
The overwhelming view of research science towards dementia assumes that a person’s life ends at diagnosis, or even, as indicated in the quote above, that those with severe dementia are no longer human. But that’s not true. My father survived seven years after his diagnosis, which is about average. Because he had early-onset dementia, he had dementia for over 10% of his life. I cannot dismiss that time as worthless.
In the early years of his diagnosis, after he stopped working, he did volunteer work and took saxophone lessons. Throughout his illness, many of his close friends stuck by him and continued to arrange to see him socially, picking him up when he could no longer drive. My father had always been a hard-charging and perfectionist academic, whose exacting standards drove a wedge between him and his daughters. Dementia softened that side of him. In some ways, I felt closer to him after his diagnosis than before.
I recognise that my family was extremely lucky, as far as one can be lucky in this situation. My father’s personality changed after his diagnosis, but he did not become paranoid or angry the way some people do. He never resisted the choices my family made for him. We were also lucky financially: my parents had invested in long-term care insurance that allowed us to place my father in a small nursing home where he got excellent one-on-one care when he needed it. We also had health insurance that allowed my sister, my mother and I to get the mental health care needed to cope. My father’s illness was extremely hard, but we made it through.
When I think of Alzheimer’s research fraud, I can’t help but think about how the money wasted on these pointless studies could have improved the lives of families who were not as lucky as mine. We have spent so much money, effort and time on finding a cure for Alzheimer’s, and we have yet to better the life of a single person affected by it. Rather than the sole focus on the magical cure, I would rather see money go towards researching how to improve the quality of life for people living with dementia.
Is there a way to improve the anger or paranoia that are such damaging symptoms of the illness? How can we build better nursing homes? However, to support these kinds of studies, we first need a fundamental cultural shift in the way we see the worth of those with dementia.
To me, the controversy over research fraud in Alzheimer’s has been a stark illustration of how we, as a society, assign value to people and their lives. Because our society does not value the lives of people with dementia, we are fine with treating them as little more than lab rats to sacrifice in the pursuit of scientific glory. Over our history, science has had to reckon with similar controversies after infamous experiments like the Tuskegee Syphilis Study – which also could not have happened if the scientists involved understood their subjects as full humans worthy of the same amount of respect and dignity as anyone else. We are due for another reckoning. This time, in recognition of the value of good quality of life for these people, we need to change the incentives for scientists so that they are not only looking for a “cure” for dementia, but also for ways to better the lives of those with the disease.
When I have made this argument to others, they are astonished that I am not more worried, as the daughter of someone who died of early-onset dementia, that I will also die of the disease. Personally, I have been able to make my peace with this possibility. We all have to die some way after all, and having experienced more than my share of physical pain in my life, I think I would prefer dying of a disease that involves less of it. If we assume that I become ill around the same age as my father, I have around 25 years. Given the track record of Alzheimer’s research over the last 25 years, and the amount of fraud, I think I would rather know that my years of illness will be significantly improved rather than relying on a cure being found before then.
The last time I saw my father, shortly before he was put on hospice, he was in the hospital. He was doing well that day, and he recognised me when I came into his room. My father and I shared a love of music, and I was playing some music for him on my phone when two women from the hospital’s nutrition unit came in to give him lunch. One was a trainee, who looked nervous about this strange middle-aged man, and the other woman began giving her instruction. My father, who recognised the situation, if not the content, from his years of teaching students, perked up. He listened to the lecture, and afterwards attempted to say something reassuring to the young trainee.
After my father died, multiple people would write to my family telling us how encouraging he had been when they presented their first philosophy paper at a conference – this kind part of his personality had persisted through the dementia. I tried to explain on his behalf, and I saw the trainee relax, just a little bit. A bit of light had been thrown on my dad the person, not just the disease that afflicted him. I wish the men who committed this fraud could have had a similar experience.
