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Dementia and Alzheimer's

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Anyone had genetic testing for early onset Alzheimer's in the family?

31 replies

GeneticTestingYesNo · 14/08/2026 13:48

Hi all

Regular user but have name changed for this board.

My father was diagnosed with early onset alzheimers at 60, and at 66 is now in end stages. He was apparently showing signs/symptoms for several years prior to diagnosis.

The relationship between his partner/him and I has been a little strained over the years however since the diagnosis I have been making the effort to visit more, be as involved as I can and so on.

His partner casually mentioned very recently that his early onset alzheimers is the genetic version, and given that his grand mother died of what was then called senile dementia, and his mother was showing signs of dementia before dying of an unrelated condition, it seems that it does run the family.

She mentioned that I would be eligible for the testing to see if I have the faulty gene, but couldn't really give me any further info.

I have a called booked with someone from the Alzheimers Society next week, and I understand that there is a course of pre and post testing counselling surrounding being tested.

But I wanted to know if anyone has done this testing themselves, and can give an insight into how long the process took, briefly what it involved and if there is anything specific I should ask about when I speak to them next week?

For context, I am male, late 40s, in reasonable health, but am a smoker and always suffered from poor sleep which I understand both can be risks for developing Alzheimers/Dementia.

I also have a teenage son, who is aware of his grandfather's diagnosis, but for various reasons does not really see him now, although will ask how he is doing and shows a brief interest in what his symptoms are. Obviously I will need to have a conversation about this with him at some point in the near future.

Thank you

OP posts:
CarpeVitam · 18/08/2026 11:19

Americanstyle · 15/08/2026 15:38

I have a copy of the Apoe4 gene, which I found out through 23and me - great 50th birthday present!

For me it’s been an absolute curse finding it out, and it has had a devastating effect on how I live my life. It all just feels a bit futile, and its rare that a day goes by that I don’t think about it, its certainly caused me depression, and yes, I know that theres no guarantee that I’ll go onto to develop it, but I’ve also had some significant health issues, a rare autoimmune disease that caused widespread vascular inflammation, certainly not what you need when you have a copy of the Apoe4 gene.

And this is precisely why I won’t get tested or do 23&me

GeneticTestingYesNo · 18/08/2026 11:22

Imdunfer · 18/08/2026 10:11

This directly conflicts with what my friend was told about the genes her mother passed on. I think, though, hers was the FTD gene which does appear to be 100% risk.

Do you know what genes are involved in your family?

I don't yet, but will find out.

OP posts:
Americanstyle · 18/08/2026 11:27

CarpeVitam · 18/08/2026 11:19

And this is precisely why I won’t get tested or do 23&me

Very wise!

underthehawthorntree · 19/08/2026 14:11

OP i would ask some questions on AI mode on Google. I've found it very helpful with understanding the different genes.

Basically there is either a predictive gene or a determinative gene. The predictive gene tells you what your risk may be of developing alzheimers but it is interlinked with other risk factors. The determinative gene is where, if it is passed onto you be a parent, you will 100% get alzheimers. However this is extremely rare and you're likely to already be aware of it because you would have a very strong family history with many members of the same family getting alzheimers, mostly at a young age.

Unless you have an extremely strong family history or a hidden family history (such as no family members on one side) then you're unlikely to have the gene which is predictive.

It seems most likely that my family has a gene which is strongly linked to heart disease and alzheimers but this appears to mean that if I am able to improve and maintain my cardiovascular health then I may be able to minimise this risk. I also need to try and hope alzheimers rewards will offer hope to me over the next 20 years or so.

underthehawthorntree · 19/08/2026 14:12

Sorry that should read "unlikely to have the gene which is determanistic"

GeneticTestingYesNo · 19/08/2026 14:27

Thanks @underthehawthorntree

I tend to try avoiding AI on Google and so on especially for health issues, as its not always so good and often needs double checking. I will be making an appointment with my GP to try and take this forward and see what I can find out.

I know my father's grandmother had dementia but I do not know what age this started, as we can no longer ask him. His mother also had symptoms until not much later.

All the info I have been given by his partner was "his alzheimers is genetic and you are eligible to be tested to see if you have the gene, if you want it".

I do need to find out more from her, the comment came out of the blue and I wasn't expecting it, so didn't really think to ask her anymore at the time, but I now have an idea of somethings to talk to her about.

OP posts:
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