An online notebook — unfinished, evolving, honest.
by Yatan
About six years ago I started noticing that my mother was changing. She wasn’t just forgetting certain things — she had also become afraid of things that had never frightened her before. After years of living by herself, she started getting afraid somebody was going to break in and wanted to be in company. I started getting worried. Others brushed it off as a normal sign of aging, I didnt.
As I often do when confronted with uncertainty, I started reading everything I could find.
Very quickly I discovered that there is no cure for Alzheimer’s, and no medication that meaningfully stops the disease. What studies — and neurologists — will tell you is that you could take certain medications and they might help. But they might also do nothing at all, and they often come with side effects.
I am not a medical doctor. My perspective is that of an informed patient-caretaker.
In practice, it is a deeply frustrating situation. Your loved one is degenerating beyond what should be expected from normal aging — forgetting is not a normal part of aging — and there is very little you can do about it.
I found some hope in functional medicine. I read The End of Alzheimer’s by Dale Bredesen and had my mother undergo a long list of tests.
Her overall health improved significantly, which improved her quality of life. But I can’t say that it meaningfully affected her cognitive decline.
So after the failure of the amyloid hypothesis, and with the limited treatment options available today, the question becomes: where do we go from here?
I became deeply involved in managing my mother’s health. In fact, I have probably tracked her health more carefully than I have ever tracked my own.
Over the years I accumulated a surprising amount of data: blood tests, stool tests, MoCA scores, and many other measurements.
Apart from doctors being impressed by how prepared I am as a son, there is almost nothing I can do with this data.
So I started wondering:
What if caregivers like me could share this data in a structured way?
And what if millions of other caregivers could do the same?
Wouldn’t that help science?
This question eventually led me to decentralized science.
A few years ago I stumbled upon an event called DeSci Berlin and decided to attend. The idea was intriguing: decentralizing science.
But decentralizing it from what?
Today, many parts of the scientific system are highly concentrated:
| Dimension | Concentration |
|---|---|
| Funding source | ~40% from one agency (NIH) |
| Research geography | ~75% in US + EU + China |
| Institutions | ~100 universities produce ~50% of papers |
| Clinical trials | ~5 pharma companies run almost all trials |
| Hypothesis focus | >70% of papers focus on amyloid |
At the same time, the disease burden of dementia is enormous.
Key numbers:
In economic terms:
(data gathered from pubmed via chatgpt)
The societal burden is massive and growing fast.
In the past few years DeSci has made some headlines. Vitalik from Ethereum and CZ from Binance have both highlighted it as a promising application of crypto.
But today what is decentralized is mostly funding.
What if data collection could also be decentralized?
What if caregivers around the world could contribute structured data about their loved ones?
What if we could test promising OTC supplements that already have anecdotal support?
What if caregivers could be incentivized to participate in research?
With millions of caregivers contributing data, we could run far more experiments, test far more hypotheses, and take many more scientific shots on goal.
Caregivers already do enormous invisible work.
Perhaps one day they could also help drive the science.
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