How long it too long to be untreated (YOA)

AlekoW · July 27

We're rolling on 7 months now since Dx & probably two more months out from getting actual treatment. How long is too long for a 60 yo YOA patient to go without treatment? Are the infusions going to be too late to be effective?

I feel like I can't press providers and health plans harder than I have been. I didn't sleep last night thinking about this. Figure I better ask.

Ed's mom · July 27

Good luck AlekoW, I too lose sleep over how much more can I push? Keep a journal and notes of your observations, it cut out months for us that I was prepared with that. I make sure she gets every test and blood work, usually driving her there. It has taken me a year to finally get her into a testing and evaluation program. Don't give up, nag.

harshedbuzz · July 27

@AlekoW

I am sorry for the struggles you and your DW have had in coming this far.

This is pretty much verbatim from a press release for researchers who looked into the gains in specific ADLs (self-care) for those with "mild" and "very mild" Alzheimer's. This study did not consider these individuals independent in that they no longer had the capacity to manage their IADLs like driving or personal finances.

https://www.cnn.com/2025/02/13/health/independent-living-new-alzheimers-drugs-wellness

There is also some thought that these medications seem to have a greater benefit for male brains vs female ones.

https://www.sciencealert.com/men-and-women-may-respond-differently-to-latest-alzheimers-drugs

Wishing you the best.
HB

Maru · July 27

https://alzconnected.org/discussion/76667/how-long-it-too-long-to-be-untreated-yoa

The first thing to remember is that ALZ is generally very slow…years and years not months and months. Assuming that your LO is still somewhere in the early stages, 2 months is not a long time to wait. In the meantime, read about the infusions because there are risks. The two of you will need to understand those risks and you need to understand that the infusions are not a cure. At best, they only slow things down. We opted not but then my DH was 90 when they were offered. Just as an aside to this question, DH's neurologist totally blew off our concerns about the risks of brain bleeds, which led me to wonder if he was just blind to them or if he was getting a "reward" from the drug company.

AlekoW · July 27

Just to clarify, we're rolling on 7 months untreated, longer depending how fast we can clear the final bits of redtape & appointment availability. I keep reading the infusions need to be done ASAP to get the best result if the patient is Early stage (She's across Stage 2 & 3 in the 7 stage/DBAT system). Since this Beast doesn't roll month to month but symptom to symptom, I just want to get her going ASAP so she can stave off whatever she can & extend her… ya, know. (I still can't say it).

AlekoW · July 27

https://alzconnected.org/discussion/comment/278446#Comment_278446

Thanks for the articles I'm jumping on them this evening.

dayn2nite2 · July 28

What sort of treatment and to what end? There is no effective treatment for this. You can read all about infusions and pills and…it's a terminal disease. Nothing will stop it from progressing. Maybe you'll get a few months' stable function. The disease always wins. I say this so you aren't beating yourself up for not advocating for your LO - there is nothing to be done that is effective at all. All you can do is learn about the stages and try to be prepared for the inevitable.

How long it too long to be untreated (YOA)

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