Something I have never seen discussed here

Ed1937

We all know there are conditions that mimic dementia, and when caught early can cause the symptoms to be a thing of the past. But one thing I've always wondered is what percentage of people being tested for dementia are found to have a condition that is treatable, and therefore dementia can be avoided? I've never seen any numbers at all on that? Does anyone have an idea? If so, are there any links you can provide?

I understand that the numbers are low, but if you find something that is treatable -- what a huge payoff!

M1

Ed I'll dig around tomorrow and see what I can find. But you're right, it's going to be a pretty low number.

Ed1937

Thanks, M1. I hope you find something.

Iris L.

I read about ten percent of dementia signs and symptoms is due to treatable causes, such as thyroid disease or vitamin B12 deficiency or other medical cause. This is low, but it's worth a shot.

Iris

Ed1937

If it's 10%, that's more than I thought. Whatever percentage it is, it's worth checking for. How many people play the lottery all the time, but might not think the tests are worth it?

harshedbuzz

Mayor @Ed1937 --

That's a really interesting question.

To my recollection, I am generally the only person around these parts who writes about IRL experience around a PWD who was treated and regained considerable cognition and function. My father has Wernicke-Korsakoff's which is a deficiency of B1/Thiamine. In his case it was caused by alcohol abuse but it can also be triggered by HIV/AIDS, certain cancers, eating disorders, bariatric surgery, extreme morning sickness. There is a thought that this happens in those with a genetic predisposition to the condition. I know for certain that my dad's nephew was diagnosed with it, treated and did ok-ish for a time before he started drinking again and died in his mid-50s. I suspect my sister had it in the year before she died of complications of AIDS.

I suspect those folks whose LOs had a deficiency around B12 or thyroid hormones have no need to stick around for help with the kind of caregiving the rest of us do. Had dad not also had Alzheimer's in addition to his WKS I probably wouldn't have had a need to be here.

HB

M5M

About 6-8 years ago….totally before any Alz ….DH was diagnosed with B12 deficiency. He had mental confusion, memory loss, several of “ the usual” symptoms of Alz. Doctor started him on B12 injections, now tablets daily. A very alert on-call in ER figured it out and tested for B12, his level was zero!

ButterflyWings

I have a younger family member who experienced what they feared was EO. Turned out to be a B12 deficiency and was treated with apparently 100% return to full capacity. No signs of confusion, cognitive loss at all that I can tell.

Quilting brings calm

Step-dad was diagnosed with a B12 deficiency a couple years ago. It’s being treated with monthly shots. Levels are now acceptable. Doctors feel he cannot absorb the vitamin through the tablets. However, he was diagnosed last fall with state 4 dementia via neuropsych testing. I never noticed much improvement in his symptoms once he started taking the shots. I’d be interested in how many people are found to have something treatable, are treated for that and are later also diagnosed with dementia.

ghphotog

Our insurance wouldn't approve the MRI until a B-12 test was done. If only the percentages were the other way around and dementia from non-treatable causes was uncommon.

M1

Found a pretty comprehensive review that had the following interesting statistics: among 33 studies reviewed, "The reported frequency of dementia due to potentially reversible causes varies from 0 to 23%. Commonest among these causes are alcohol and medication related dementia, depression induced cognitive impairment, surgical brain lesions such as normal pressure hydrocephalus [NPH], tumors and chronic subdural hematomas, metabolic disorders such as hypothyroidism, hypoparathyroidism, vitamin B12 deficiency and central nervous system (CNS) infections such as neurosyphilis and HIV." Couldn't reproduce the table, but taking the 33 studies collectively, median rate of potentially reversible causes was 9%. However, many of these (in fact the majority) were not completely reversed, for various reasons, a lot having to do with damage already done. Here's the citation:

Tripathi M, Vibha D. Reversible dementias. Indian J Psychiatry. 2009 Jan;51 Suppl 1(Suppl1):S52-5. PMID: 21416018; PMCID: PMC3038529.

Iris L.

I always say the medical dementia mimics may be treatable if caught in time.

Regarding vitamin B12, absorption decreases markedly after age 50. I'm surprised that more adults are not tested for it. Vitamin pills won't help. B12 injections or possibly sublingual tabs may be absorbed.

Iris

Ed1937

Very interesting. Thank you!

Mint

Thank you, also found this interesting

Ossom

Hey Ed1937,

Thankyou for the thought-provoking question! While our situation is a bit different because our father's Neurosyphilis and related dementia symptoms weren't caught early, the information you're after is still super important for stopping dementia before it starts.

Syphilis is a bacterial infection that can mess up your whole body if you don't get treated. It can even cause neurosyphilis, which is a big problem if it gets into your brain and causes dementia-like symptoms. As in our father's case.

But here's the good news: if you catch syphilis early and get the right antibiotics, you can stop it from causing all those nasty complications.

Unfortunately we reside in the state of California where he has the right to refuse treatment. Which is what he did for some reason. There was nothing we could do to get him the help he needed in time.

The only issue is that a lot of people don't get tested or get diagnosed too late, so they end up with really bad outcomes, like what's happening with my father.

As for the exact numbers of dementia cases that could've been prevented, well, it might vary a bit. But the main thing is that we all need to be on top of our check-ups, screenings, and staying informed. Syphilis is no joke.

The more we know and the more we get tested, the fewer people will have to deal with dementia unnecessarily.

Hope this helps give a little more context to your question! And keep up the great work on spreading the word about early detection and prevention. It's a topic that needs way more love and attention.

https://alzconnected.org/group/50-nuro-syphilis-dementia