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Share your dilemmas and get honest opinions from other Mumsnetters.

to tell my parents that one of them has the dementia gene?

59 replies

coatlessinspokane · 17/07/2019 18:56

Am early 50s.. Recently went for an MRI scan for unrelated thing. It came back normal with "some shading which could be related to age".

As I feel more forgetful than usual, this freaked me out a bit so I got a genetic test done which came back with one variant of the Apoe4 gene which means a "slightly increased risk of late onset Alzheimer's"

After freaking out some more I researched the hell out of it and have decided to do what I can in terms of lifestyle changes. The most recommended remedies are: coconut oil, turmeric, cutting out gluten, and increasing exercise.

I've started to implement all of these but now I've gotten to thinking about my parents, who are in their 80's, and whether I should tell them or not. I'm pretty sure it's my dad who has the gene as his ancestry is from a population that has an extremely high incidence of this gene. He also drinks a fair bit and was considered earlier in the year to be pre-diabetic which also elevates the risk.

I really don't know what to do. To tell them would be to drop a bombshell when at this age they've come far enough and would be quite a selfish thing to do. To not tell them would mean that he can't benefit from the preventative measures that may help him in the long run. He is slightly forgetful but pretty good for his age. He's extremely clever and keeps his mind active but I worry about his diet which is full of carbs and gluten.

Please tell me what would be the right thing to do.To be honest, I wish I could undo this knowledge that I have.

OP posts:
user87382294757 · 18/07/2019 13:36

Here is the site I mentioned APOE4 info www.apoe4.info/wp/

Sakura7 · 18/07/2019 14:13

Agree with a PP, it's if you have two copies of the Apoe4 gene that your risk is much higher. If it's just one, you have a higher risk than the general population, but it's still a less significant risk factor than age (obviously), high cholesterol and high blood pressure.

I read that there have been some studies done which indicate that the genetic risk of getting Alzheimer's is higher for people who had a mother with the disease. Where the father has the disease, the risk factor is similar to the general population. Obviously it can't be taken as gospel and much more research would need to be conducted, but I found it interesting as my father and his mother had it.

I'm glad you have decided not to tell your parents. No good would have come of it.

coatlessinspokane · 18/07/2019 16:32

Thanks @user87382294757 just sitting down to have a look now.

@Sakura7 I would love it if the father theory were true (well for me obviously) as I’m pretty certain he is the gene-bearer. He is part Nigerian and they have the highest incidence of Apoe4 in the world although low rates of AD due to low cholesterol.

I’m going to learn how to keep mine down. I hope it’s not too late as I haven’t been the most exerciseful to date.

OP posts:
user87382294757 · 18/07/2019 17:09

Yes there is some interesting stuff about ethnicity, as you mention Nigerians have lesser incidence maybe due to their other genes, also men have a lower risk than women, with one copy too. Maybe that helps a bit! There is so much written on the gene but actually quite a lot of speculation.

Sorryisntgoodenough · 18/07/2019 17:31

Did you read the link I posted earlier about the man that 23andme told had a dementia gene but when he finally persuaded his dr to re test it turned out he didn’t?

user87382294757 · 18/07/2019 17:53

If you wanted to you could run your data through something like Promethease to check. I did this, tells you some interesting stuff as well.

isogg.org/wiki/Promethease

icelollies · 18/07/2019 18:07

i also agree with not telling them, if anything, stress and worry can contribute to memory problems, and maybe dementia. If they are happy and healthy they are probably doing the right things for them already!
But you are doing the right things for you - diet, and physical and mental health are the key things you can change, everything else is chance. Having the gene does not mean you will get a dementia, but i wish you all the best x

coatlessinspokane · 18/07/2019 18:50

Oh gosh will the Promethease report tell me more terrible stuff?

I’m enjoying the apoe4.info website. Lots of useful info.

OP posts:
user87382294757 · 18/07/2019 20:29

For me it confirmed the one copy of APOE4 and then there is a bit under dementia which showed other genes were good so it helped a bit. But it labels snps, good and bad and sometimes when you read further it isn't that simple. It said I had the good version of the longevity snp, FOXO3 which is interesting, and helped me feel there were more that just APOE to think of. I take it all with a bit of a pinch of salt though

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