"Early Onset Dementia" - How to search forum?

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johnseed
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"Early Onset Dementia" - How to search forum?

Postby johnseed » Fri Sep 24, 2021 4:19 pm

Not sure if there's a more appropriate place to ask this question than starting a new topic...

A friend's mother just died with early onset dementia and her GP told her that she has one chance in 2 of the same. He must be convinced its genetic though I'm pretty sure my friend hasn't had her genome sequenced. I was wondering if there was any discussion on this site so I searched on early onset and got 570 hits with "early" and "onset". So I tried searching on "early onset" (in inverted commas) hoping to weed out those posts that contained "early" and "onset" not adjacent to each other. However, I still got 570 hits.

Is there any way to search for "early onset"?

And do any of you know where I can get reliable information about early onset dementia?

Thanks

John

Tincup
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Re: "Early Onset Dementia" - How to search forum?

Postby Tincup » Fri Sep 24, 2021 8:15 pm

johnseed wrote:Is there any way to search for "early onset"?


Hi John,

One way to search would be a Google search of the site.

This link puts these search terms in Google (as we are indexed by Google):
"early onset" site:apoe4.info

There are 6 pages + 1 entry on the 7th page.
Tincup
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johnseed
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Re: "Early Onset Dementia" - How to search forum?

Postby johnseed » Sat Sep 25, 2021 3:16 am

[quote="Tincup"]

Thanks so much Tincup, very handy to know this for the current search and no doubt others to come

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TheresaB
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Re: "Early Onset Dementia" - How to search forum?

Postby TheresaB » Sat Sep 25, 2021 6:19 am

Searching for a phrase is explained in our wiki Searching for phrases in discussions

This is under the main subject in our wiki "How-To" Get the most out of the ApoE4.info website
-Theresa
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floramaria
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Re: "Early Onset Dementia" - How to search forum?

Postby floramaria » Sat Sep 25, 2021 10:48 am

johnseed wrote:Not sure if there's a more appropriate place to ask this question than starting a new topic...

A friend's mother just died with early onset dementia and her GP told her that she has one chance in 2 of the same. He must be convinced its genetic though I'm pretty sure my friend hasn't had her genome sequenced. I was wondering if there was any discussion on this site so I searched on early onset and got 570 hits with "early" and "onset". So I tried searching on "early onset" (in inverted commas) hoping to weed out those posts that contained "early" and "onset" not adjacent to each other. However, I still got 570 hits.

Is there any way to search for "early onset"?

And do any of you know where I can get reliable information about early onset dementia?

Thanks

John

Hi John, The most well-known (to me anyway) mutations for familial early onset Alzheimer’s disease are PSEN1, PSEN2 and APP. You might try looking for those instead. By searching for one (or all) of those, you’ll get a lot fewer results. I looked for posts on PSEN1 and there are 71.
Searching these will eliminate all of the posts that refer to sporadic Alzheimer’s Disease that begins early.
And just so you can pass this to your friend, I personally know someone who has one of these EOAD mutations. This person is following Dr. Bredesen’s protocol and is doing much better than others in the family.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
Qualified ReCODE Practitioner

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Re: "Early Onset Dementia" - How to search forum?

Postby NF52 » Sat Sep 25, 2021 4:35 pm

johnseed wrote:Not sure if there's a more appropriate place to ask this question than starting a new topic...

A friend's mother just died with early onset dementia and her GP told her that she has one chance in 2 of the same....

And do any of you know where I can get reliable information about early onset dementia?...
John
Hi John,

Please let your friend know that we are deeply sorry for the recent loss of her mother due to early onset Alzheimer's dementia (EOAD). The loss of a mother at any age is hard; at what was presumably an age younger than 65 it must be especially hard.

I am wondering if the GP actually knew from genetic testing that her mother had one of the dominantly inherited genes for EAOD. Here is some info from the NIA/NIH Fact Sheet: Early-Onset Alzheimer's disease on these mutations. EOAD would usually be seen in multiple family members (the mom and one of her parents, or extended family members), because each child has a 50% chance of inheriting the "dominant" gene mutation from the affected parent.
Early-Onset Alzheimer's Disease
Early-onset Alzheimer’s disease is rare, representing less than 10 percent of all people with Alzheimer’s. It typically occurs between a person’s 30s and mid-60s. Some cases are caused by an inherited change in one of three genes.

The three single-gene mutations associated with early-onset Alzheimer’s disease are:

Amyloid precursor protein (APP) on chromosome 21
Presenilin 1 (PSEN1) on chromosome 14
Presenilin 2 (PSEN2) on chromosome 1
Mutations in these genes result in the production of abnormal proteins that are associated with the disease. Each of these mutations plays a role in the breakdown of APP, a protein whose precise function is not yet fully understood. This breakdown is part of a process that generates harmful forms of amyloid plaques, a hallmark of Alzheimer’s disease.

A child whose biological mother or father carries a genetic mutation for one of these three genes has a 50/50 chance of inheriting that mutation. If the mutation is in fact inherited, the child has a very strong probability of developing early-onset Alzheimer’s disease.

For other cases of early-onset Alzheimer’s, research has shown that other genetic components are involved. Studies are ongoing to identify additional genetic risk variants.
Below is an important fact from the Alzheimer's Association about how few cases of EAOD are caused by familial, dominant genes: [Emphasis added.]
Causes of early-onset including genetics

Doctors do not understand why most cases of early-onset Alzheimer's appear at such a young age. But in a few hundred families worldwide, scientists have pinpointed several rare genes that directly cause Alzheimer's. People who inherit these rare genes tend to develop symptoms in their 30s, 40s and 50s. When Alzheimer's disease is caused by deterministic genes, it is called “familial Alzheimer's disease,” and many family members in multiple generations are affected.
https://www.alz.org/alzheimers-dementia/what-is-alzheimers/younger-early-onset

If your friend's mother developed Alzheimer's in her 50's or even early 60's, it's possible it was "Young-Onset" Alzheimer's--meaning it had the same biomarkers of amyloid plaque and tau tangles as "late-onset" AD, but happened at a younger age. Lots of research is looking at what factors cause young-onset AD, but it's clear that one family member can have that in the 50's and others may never develop AD, or not until decades later. Suspected factors include repetitive mild traumatic brain injury, exposure to toxins in large amounts (farms, wells, factories), cardio-vascular disease, smoking, or the influence of many small-effect genetic risk genes.

She may want to see if the doctor who treated her mother (not her own GP) can provide more information on whether the mother had formal cognitive testing and imaging (MRI/PET) at an Alzheimer's memory clinic to rule out other dementias, such as Lewy body dementia or frontal-temporal dementia (FTD), which can occur at young ages and sometimes mimic features of Alzheimer's. Even in research studies, it's been found that about 20% of people diagnosed by specialists with "Alzheimer’s" before PET scans and MRIs became common for research did not have AD when they later studied their donated brain tissue. So if the GP was basing your friend's risk solely on her mother's age of onset, that would make me look further.

She may want to consider genetic testing, although I don't know what insurance in Australia covers for EAOD. I wish her well--she is lucky to have such a caring friend.
4/4 and still an optimist!

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Re: "Early Onset Dementia" - How to search forum?

Postby johnseed » Sat Sep 25, 2021 5:15 pm

NF52 wrote:
johnseed wrote:

Thanks so much NF52, I'll follow up on your suggestions


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