Hacker News

> the medication she's on stopped its progression

what medication is that?

Creatine supplementation is showing some promising indications of being a low cost, mild to moderate intervention https://www.psychologytoday.com/us/blog/the-modern-brain/202...

what? there aren't any treatments that stop alzheimers, there are some that help manage symptoms

> anti-amyloid drugs

Isn’t the viewpoint in the last decade that amyloid plaques are likely a finding rather than the underlying cause of Alzheimer’s Disease?

if cholesterol predicted future cognitive health we wouldn’t need dedicated tests, do we?

You can do all that without an expensive blood test.

I know it’s a joke but then you’ll leave your family bearing the burden of your care. As someone whose parents had dementia, finding a place that treats your parents with dignity is extremely expensive and very rare. We were spending 12k/month and even we needed to set up camera’s and my sister slept with my mom and took care of her like a nurse. When the pandemic hit my sister couldn’t enter so every morning they took my mom, clothed her and sat her facing the bathroom all day long.

The only other alternative is some sort of mental hospital which is more like a prison than anything else.

The sad fact is that some people really should. Many people find it far easier to be or become indigent and fall on Medicaid services. If you do not qualify for Medicaid, then there is a real possibility that your insurance carrier will help put you or your caregivers into massive debt for a long-term illness like this.

If you do go into long-term care, Medicaid will probably seize your assets to help pay for everything. For example, a house in your name. They'll use those to pay back what they paid for your care.

So if you're gonna get sick and you're gonna be a burden in your old age, best to plan for leaving this world the way you came in: naked and penniless.

I do think telling you to get your affairs in order and to arrange for hospice care is probably good for the doctors. They don't want a family coming in with a sudden decline case and all the information about how to pay for it lost, at minimum

While I’ve nothing to say about these research scientists in particular, knowing precisely nothing about them, it wouldn’t be the first time that so-called ‘bonafide’ research scientists made a statistical boo-boo, even one structural to the research thesis than any sort of math error.

Given the widely-reported extent of p-hacking in the biomedical literature over the decades, I’m surprised anyone would float an avid ‘but how could research scientists ever be wrong’ default reflex.

thanks!

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.

I'm so sorry you went through that.

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

The also have an abnormally short lifespan of something like 67 years. I wonder if the two are related?

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.

> "If there's no potential harm from the procedure itself"

There is potential harm from the procedure itself because of https://en.wikipedia.org/wiki/Opportunity_cost and https://en.wikipedia.org/wiki/Budget_constraint and because sticking needles in people and drawing blood carries inherent medical risks.

So we should just let companies flood doctors with potential treatments and then hope they have enough time to figure out whats relevant for their patients?

Seems much better use of time and money to have people developing tests meet a pre-defined standard and after that point they're allowed to flood doctors with marketing for the tests.

What use is future medical advancements if it can't meet low bars like proving it works?

There is potential harm. That's the point.