Julie G, it is very much appreciated that there is an internet forum that any day any time that the dementia community can talk dementia. Dementia 24/7. All Dementia; All the time.
Big Tent society is no longer plausible. I have contacted extended family through the online genotypers and when I asked about any AD in the family all they could reply was: What is dementia?
OK Yeah, whatever, What's the point? What's the point of a broad society when we are all on different flight plans?
Nevertheless I still found it quite impressive that not only had you seen the JAMA article but that you were likewise unimpressed with "the answer". This is considered an "expert level answer"? I have arrived at the conclusion that if I need expert level help, I should consult the experts like those on this forum (you, floramaria etc.). The authorized answer: Do nothing is abysmal. In one of trips to the hospital one of the nurses explained how much she truly hated her medical education and only got through her training because at the end of it she knew she had a 70k job for life. Extrinsic motivation will never make you happy and it will never make you a true expert. When the exam are over you need to want to keep searching out for answers. Apparently, that nurse never did find happiness in what she was doing. Find something that you love doing and then find a way to be paid for it. This seems to be the recipe of life success more than starting at the end and working forward.
Having an internet cafe where one serves and others return volley is enormously appreciated. I also agree that there is much that can be done in the early stages that apparently current medical training does not recognize.
Of the answers given "Refer for genetic counseling" seems the most sensible.
We know that the genetics of Alzheimer's is much more complicated than simply APOE epsilon 4 positive or not.
Establishing the AD polygenic score would be a great place to start.
Next move would be to go full genome and look out for rare variants that look risky.
The especially worrisome variants that were not reported in the GWAS could then be followed up with
contacting extended family on GEDmatch etc..
It appears that a super-rare variant could be at play in my family.
There then a wide range of possible interventions that could then be tried as discussed on this forum.
Remarkably it is this very patient advocacy and participation that has helped "invent" an early intervention for AD.
I regret not being more bold when taurx announced methylene blue at the 2008 ICAD. https://www.alzforum.org/news/conferenc ... eatment-ad
I saw this item at that time and yet it is always so confusing to know what to do.
Here we are 13 years later and the final headline is still yet to be published, though methylene blue clearly now does appear to be a breakthrough treatment.
It is all of this uncertainty that makes it so confusing. When everything is sorted out, preventative/curative AD treatment might only require a one paragraph entry in the Merck Manual, though we have been struggling for years to try and anticipate what the recipe might be.
I actually went to medical school. Er, by that mean I loitered in the hallways of a medical school before security was able to locate me. I developed the impression that medicine was not for me. My impression was that medical schools really did not understand what 21st Century was going to be about. Medicine needs to constantly reinvent itself to stay relevant, though what I absorbed osmotically in my trespass was that this would not happen. Medicine would not find its way to the leading edge of modernity. Surprisingly, I am unclear whether even now there is a title such as MD of Alzheimer Medicine. Yet, AD is the pandemic of the 21st Century. This for some reason is a somewhat obscure observation.
Instead of focusing on reality, medicine largely has continued to understand the world in terms of infectious illness. COVId might seem to be a validation for this perspective, yet upon further reflection this is not entirely true. For the full sequence of COVID was found within ~ the first month of the pandemic; an RNA vaccine for COVID was rapidly produced (within ~ 1 month). Emergent infectious illnesses (such as COVID) should not be thought of the future of medicine, but the past. If another infection like COVID were to arise, it is possible that vaccination could begin even before the first wave hit.
It is very disappointing that medicine has embraced the action movie vision of reality (epitomized by COVID) and not the more mundane yet truthful reality of dementing illness.
The JAMA suggested response to the skill testing question further highlights for me how out of touch the mainstream really is from the leading frontier of AD thinking.
Education according to the plan of:
"Repeat after me." "Repeat after me."
"I state your name." "I state your name."
I am glad I missed out.
It seemed so out of tune and it still does.
If I had to do it again I am now leaning to the model that you and Stavia have embraced.
Go all over the world and attend extremely interesting lectures by the thought leaders in your field.
This would be fantastic!
Basically blow a million dollars and have the best time of your life. (though mouching the million from your parents, the government or the banks might need some finesse.)
Admittedly, the girls having fun model would be more psychologically difficult to replicate in the other gender.