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Comment by ggm

14 hours ago

Do we yet have any good avoidance or mitigation regimes, be they drug or otherwise for people who show positive on a test like this? The alternative is that it lets you put things in place for when you lose agency.

Good as in scientifically proven. Not speculative fantasy.

We don’t currently have any data that shows any clear way to halt or slow Alzheimer’s.

As someone with family affected by this disease, it’s a very personal choice whether you want to know or not, but I wish people understood that there are many things you can do with it, particularly for those who will be there for you if/when it hits.

Taking care of a loved one with this disease is extremely hard, and it’s even harder when they haven’t had any chance to prepare for this eventuality. Stuff like written records of your history (health, life, etc.), clear powers of attorney, and so on.

It also makes things much easier for healthcare professionals.

  • Just lost my aunt to Alzheimer's this last week. +1 on the hard to take care of bit. They turn into toddlers, then animals, then nothing. It's heartbreaking.

    • I lost my grandma because of this. She was taken care of by my uncle and my father, and deep in my heart, part of me blames them for not doing their best. At the same time, I know they did way more than I ever could have done. It’s just so hard to take care of someone like that.

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    • I've lost my aunt and now losing my mother to it. It's a garbage diseases and such a burden on the loved ones, mental, physical and financial.

  • One other piece of advice I would offer is: find a class at your local hospital or similar. I attended a once-a-week for six weeks thing and it made a huge difference in my perception of dealing with someone suffering from dementia and gave me so much more patience/ grace than I would have had otherwise.

    • Sometimes the majority of the suffering is had by the people around the dementia patient.

The article doesn't explicitly say but presumably you can start taking the anti-amyloid drugs to slow down the progression immediately, there's also lifestyle changes that can be made (most of those would likely benefit most people)

https://www.nih.gov/news-events/news-releases/combination-he...

> Early detection of Alzheimer’s disease is important since the first treatments capable of slowing the progression of the neurodegenerative disease recently became available to patients, and these drugs are more effective when started sooner rather than later.

  • Not a doctor or medical scientist, but my understanding is a) the effectiveness of those anti-amyloid drugs as a preventative tool is unclear, and b) they have a pretty scary safety profile.

    Clearly the goal is to be able to prevent the disease from progressing or slow it significantly, but are we really there yet even if we have a test?

    • As someone with a family member taking one of the newest drugs, I can attest that it does seem to meaningfully slow progression — from rapid decline nearly to a halt in my loved one’s case.

      The risk of dangerous side effects seems to be much higher for those with APOE4 — before approving the treatment they required among other things a genetic test ruling that out. (There are several other genetic variants that predispose to Alzheimer’s, fwiw.) We were lucky and saw none of the concerning side effects.

      Are we “there” yet? Where’s there?

      The prognosis after this treatment is a massive improvement over what it would have been at this stage of progression if it had been reached even 5 years ago.

      If you can detect the disease even earlier and halt progress at a point where you retain more cognitive function, that’s a huge win — and gives you time to wait it out a bit longer in hope that we’re able to develop a treatment that doesn’t just pause but can reverse progression.

      Yeah, I doubt we’re ready yet to administer these drugs to people who are asymptomatic (not to mention how pricey they currently are). But for someone who likely has the genes for it, just _knowing_ would in some ways be a relief.

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Yes, there is the FINGERS method. See e.g. https://fbhi.se For Alzheimer is particular, there are also some drugs now (e.g. Leqembi) that slow down the process, but no cure yet.