My mother suffered from early onset Alzheimers disease, and died at 73 from complications due to Alzheimers (though she was completely gone as a person well before that). My sisters and I were all part of the AHEAD study (https://ancillary-proxy.atarimworker.io?url=https%3A%2F%2Fwww.aheadstudy.org%2F) and we all carry the APOE4 gene, but were kicked out because we did not show evidence of amyloid proteins in our head. My sisters continued to get testing privately, but because I have amyloid proteins in my blood, I was admitted to a side study of AHEAD called APEX (https://ancillary-proxy.atarimworker.io?url=https%3A%2F%2Fwww.actcinfo.org%2Falzheimers-plasma-extension-apex-study%2F). A month ago one of my sisters showed marked decline in cognitive testing, and a subsequent PET scan showed amyloid plaques in her brain. She is 60. They have started her on lacanamab, but from what I read it is a really uncertain treatment, with risks of brain bleeds as a side effect and only the promise of some reduction in the progress of the disease as the best possible outcome.
It's a really scary time.