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

[coatlessinspokane]

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.

I would suggest the preventative changes but under the guise of something else, maybe the avoiding diabetes thing. You could easily attribute exercise, gluten etc to that. Even if you don't mention it you have the knowledge to be aware of things and can spot symptoms earlier which could mean getting treatment earlier which is more effective.

If they're already in the 80's, I'm not sure it would be worth the worry? Your dad may or may not get it? I guess it depends on how they think about things. For example, would they be constantly worrying about every possible symptom? On the other hand, it does sound like your dad could do a bit more to actually look after himself.

I would make suggestions based on a lifestyle improvement/adaption suggestion. I would not tell him. I think the worry might be too much.

Out of interest, where and how did you get the genetic test done? I have similar concerns due to family history.

I think cognitive exercise is also preventative?

I would do as the other posters suggest. At his age, I would be concerned you would worry him unduly, when he has limited time to do anything about it. I think finding out about genetic risk has to be a decision for the individual, though I totally understand your concern and wish to help him prevent dementia.

They're doing well if they're in their 80s. I can't see much point worrying them now.

At 80, I would mention nothing

They got this far in good health, so they must be doing something right, and a lot of people in their 80s would struggle to change habits

I would not want to worry them

Oh please don't! Like you say they're in their 80s and okay so far. Would you want to put them through the worry that you're going through? And the guilt in case they've "passed it on" to you.

But I'm so sorry you have had those results. Hopefully it will come to naught

I dont think gluten causes dementia I dont think coconut oil prevents it either I think its to do with keeping your mind and body active and healthy

I wouldn't worry them now, I think it's unlikely they would be keen to make significant lifestyle changes at their ages anyway, even knowing the risk (which after all is only a"slight increase").

He's already in his 80s. There is literally nothing to be gained by being told this now.

The biggest risk factor for dementia is old age so I wouldn’t say much at all other than to keep as active and interested in life as possible.

I’m sure they already know that the likelihood of this awful disease is there. It’s not something they will want to dwell on.

Nah. They are 80. Why tell them?

@DoneLikeAKipper from 23andme

Ok, the general consensus seems to be not. It's such a hard thing to keep in but I shall. I love my Dad so much and would hate to worry him.

The thing is he went through a period of cutting down on beer due to his doctor's recommendation but that swiftly went to the wayside. He even had a glucometer thing which he doesn't use anymore.

But he has such a nice lifestyle with his beer, daily bread, and wine (sounds very biblical!) that maybe you're right, it's not worth it.

@StCharlotte thanks for your kindness, I've been pretty anxious but am consoling myself with the thought that I only have one of the genes and that I'm hopefully young enough to implement some changes that might stave it off.

I agree with the other posters saying there’s absolutely no point in telling them.

Don't say or do anything. They're in their 80s. Any changes now will have minimal effect compared to the rest of their lifetime habits, and they'll feel they are to blame for passing it on to you. Plus they'll then worry about getting dementia, and they may as well have peace of mind while they can if it's going to strike them later - don't rob them of this.

Is this research from peer reviewed medical journals that is telling you that about gluten and coconut oil? I have to say I'm sceptical. If nothing else, the Daily Express would have printed a headline about it by now as they love stories about treating dementia.

Was the test done on the nhs? I've had genetic testing to find out if I'm the carrier of a specific medical condition DD has and although the implications weren't that serious (it's not a fatal illness) there was a lot of discussion, counselling etc before we went ahead (and turns out I am the carrier of the gene)

I do worry about the reliability and consequences of genetic testing, especially if done by a private company. You can't undo the information when you've got it and it could cause a lot of unnecessary worry

and they'll feel they are to blame for passing it on to you.

I hadn't thought about that. It's genes after all which can't be helped. To be honest I'm so scared of them eventually dying and being left to cope with this on my own. We're super close and I tell them everything. But this one thing I can't. It's killing me but I know that to do so would be selfish in a way. Thanks so much for your advice everyone.

They told this bloke he had the gene for early onset and they were wrong. I have 3 family members with Alzheimer’s so I was looking into test and the reviews I read about their testing in general made me not want to bother.

www.nytimes.com/2018/09/15/opinion/sunday/23andme-ancestry-alzheimers-genetic-testing.html

From the Alzheimer's Society website:

'Routine testing for risk genes like APOE is not available on the NHS and is not generally recommended....

This is why predictive testing is only done with expert genetic counselling - both before and after testing - over several months.'

As others have said, lifestyle changes at this stage, when he’s already in his eighties, aren’t going to make a difference to his chances of developing dementia.

The worry it would cause him to know - anytime he forgets something he’ll wonder if it’s starting - far outweighs any potential benefit of telling him.

This is why predictive testing is only done with expert genetic counselling - both before and after testing - over several months.

i had to watch a couple of videos and that was all.

I wouldn’t tell them, but if you become aware of symptoms encourage them to go to the GP ASAP - I understand drugs are most effective when started early.

I would also make sure they have Powers of Attorney in place, just in case. That could one day make your life an awful lot easier.

Who did you have the genetic testing done with?
What's their reliability like?

Dear OP,
I do think you are likely to be worrying unnecessarily and urge you to make an appointment with your GP to discuss the results. This is why I am strongly against genetic testing without expert medical advice as interpreting the results and the impact they will have on an individual is a task that requires expertise. Most genes do not work in the way genes for conditions such as Huntington’s work where having the gene means you will inevitably get the condition. How most genes express themselves depends on a combination of genes and the environment in which they work (your overall health, lifestyle and exposure to other factors).

The lifetime risk of developing dementia in the UK is approximately 15-20%. Even if this gene increased the risk by itself by 10% (which is unlikely and as I said usually relates upon other genes and environmental factors as well) then the lifetime would only increase to 16.5-22%.

I would also be wary about claims for things like turmeric and coconut oil as the evidence is poor to non existent. Evidence shows that a healthy balanced diet, regular exercise and keeping your brain active are the most effective ways of reducing the risk of dementia and other conditions as well.

Make an appointment with your GP, discuss the findings, ask for advice on how to reduce the risk and no don’t inform you parents.