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Did The Math On Young Onset In The United States
Posted: Friday, September 4, 2015 8:32 PM
Joined: 7/24/2015
Posts: 3020

Hi Everyone,

I took a few days and I did the math on just how many people there are with young onset dementia. It took a while to figure this all out.

So in 2012 the study put forward by the Alzheimer's Association estimated that there are approximately 5.3 million people in the USA aged 65 and up with Alzheimer's.

It is estimated that only 60%-80% of dementia cases are Alzheimer's. So we need to tack on another 20%-40% to the 5.3 million people. Which adds an additional 1.06 million - 2.12 million people with dementia that is not Alzheimer's. For a total of 6.36 million - 7.42 million people (over the age 65) with dementia (including Alzheimer's).

It is then also estimated that of those people, between 5%-10% are young onset (although never officially counted (seemingly anywhere)). That is approximately and additional 636,000-742,000 people in the USA with young onset dementia (including Alzheimer's).

Broken down, that is 12,000-14,000 people with young onset dementia in each state in the USA.

While my math might be faulty in preciseness, the premise is sound.

There are certainly more than a few of us...and certainly enough to warrant services, at least in the capitol cities of each state.

Posted: Saturday, September 5, 2015 4:25 AM
Joined: 9/12/2013
Posts: 3560

seems low. however thank you for calculating. I would not even try to figure out something like that.

because I am a recluse but type, people assume I am doing well enough to not need any comfort or help.

I will guess double that number have it and do not have access or means to get a diagnosis, or are lost in MAYBE land.

good to see you here again.

Posted: Saturday, September 5, 2015 8:20 AM
Joined: 5/20/2014
Posts: 4405

Thanks Sun!
Posted: Saturday, September 5, 2015 9:28 AM
Joined: 7/24/2015
Posts: 3020

Yes, I too guess that it would be much, much more. No one has ever counted us. And the counts that are there and woefully incomplete. And there is no allowances for those not reported cases.

My guess is that is more reflective of ages 55-65.

However, 12,000-14,000 per state is enough to warrant a staffed support group in each capitol city (at the very least). And it is enough to warrant those staff making the meetings engaging enough for people to want to come back.

In another group, someone suggested we infiltrate their CG groups.

And, I hear that Iowa has a ton of good groups.

Michael Ellenbogen
Posted: Saturday, September 5, 2015 12:00 PM
Joined: 11/30/2011
Posts: 3468

They claim that there is 200,000 in the US. Keep in mind just over 50 % are not diagnosed. But it gets more complicated when you break down by state. For example my state is one of the highest states for people with dementia. Not sure why. So when trying to figure out recourses that will have a major role in were people provide services. On real interesting fact is healthcare cost in Philadelphia is one of the highest. One would make you wonder why when you would think it should be lower. Its weird how things work out.

Posted: Saturday, September 5, 2015 12:14 PM
Joined: 7/24/2015
Posts: 3020

Hi Michael,

Most people misinterpret the numbers. The original 5.3 million people with Alz, refers to Alz proper...and then only those 65 and older.

Then they go about doing %'s...but then people mistake thinking it means that % of the 5.3 million. Instead we have to add. Only 60%-80% of people with dementia have we have to add 20%-40% more people...again, now only those over 65.

They say 5%-10% have young again we have to add this figure to the 5.3 million. In total it makes 6-7+ million with dementia (including those with Alz) over age 65.

My figure suggests 636,000-742,000 people in the USA with young onset dementia (including Alzheimer's). Not merely 200,000.

Divided by 50 gives us 12,000 to 14,000 per state.

Considering that there are only 1.2 million people living with AIDs in the USA (according to the CDC).

Or that globally only 14 million people have cancer, whereas globally 47.5 million people have dementia.

Michael Ellenbogen
Posted: Saturday, September 5, 2015 2:22 PM
Joined: 11/30/2011
Posts: 3468

I will tell you the numbers are hard to figure out and not even sure they can be trusted based on what AA has. In the UK when they really focused on the numbers they had more than doubled from their previous statics and they are still growing. The bottom line is there are so many of us and we need a dam cure already. There is absolutely no excuse on the part of government or anyone else to not treat us the same as the folks who have cancer or HIV.

Posted: Saturday, September 5, 2015 3:53 PM
Joined: 7/24/2015
Posts: 3020


Dare I be blasphemous, but once any association is created to raise tons of money for a cure, you can pretty much bank on the fact that there will never be a cure.

Look at cancer, they raise more money than anyone - no cure.

Look at AIDs, less money...some great trials - no cure. Well, there is a cure, found accidentally with a bone marrow transplant of someone who was immune to AIDs, cured the guy's AIDs. Are they studying that? Nope. In fact, they outlawed advertising and selling to transplant...otherwise the few who are immune would make millions.

Look at autism, no cure.

Look at Alzheimer's, no cure. They are likely not even looking down the right avenues. That said, there is a book, maybe you care to digest called Neuropsychology & The Dementias that goes over all the studies and exactly the way the brain works to greater detail than most humans (excepts us geeks) care to know. Why do we only treat 1 neurotransmitter??? Why not all of them???

What I liked about the AIDs movement, is that they re-wrote how one should trial drugs...that was accepted by the researchers. I think there was a documentary or docudrama on it called The Normal Heart or something like that. Although they got the use of the 3 drugs approved, after a while it was shown that they did not work.

Maybe my perspective is a bit different than most people's since I came in from the autoimmune arena...where even doctors are clueless what to do.

A cure would be nice. A better treatment would be nice too. Support would be great. Training and educating the public would be phenominal. Getting services for people under 55, that is just necessary.

Anyways, may we one day have a cure.