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.

In their 80s any number of other medical conditions could carry them off long before dementia. You can give health related advice that isn't connected to it at all. Also it's great news for you that it hasn't affected them yet, if I tell you that your late onset dementia won't kick in until age 120 do you feel better about it?

I wouldn’t tell either of them. If it is your dad, it could potentially be as much of an unwanted bombshell of worry for your mum if she thinks she will outlive him.

This is the reason why genetic counsellors spend a lot of time with people going through things like this and whether they really want the tests done. Largely it’s the impact on other family members - parents, siblings, children etc.

DO NOT TELL THEM!

I also have one variant of the Apoe4 gene which means a "slightly increased risk of late onset Alzheimer's

I am 65 and my parents both died not long ago.

My dad just over a yr ago and my mother this year. My dad was 86 and my mum was 88 when they died.

It was my mum that had the dementia and it didn't show up until she was 83 or 84. I first noticed it when she'd laugh at a cartoon in the newspaper and read the paper again shortly after and laugh again as if she was seeing it for the first time. I figured she was having twice as much fun and she was also reading the same books twice not realizing it sometimes until she was well into it. (Saved trips to the library). When she was about 85/86 she had trouble paying her bills, they confused her, but she was still enjoying life and noticed nothing wrong or didn't admitted it.

At the end when she was 87/88 and ill from something else she was confused as to where my dad had gone. Why wasn't he visiting her? Then she thought he was in the kitchen and she was okay with that. Sometimes she was mentally transported back to 1970 when I was a teenager had a pony. But her confusion would pass and she'd be back in 2019 again.

It never occurred to me to tell her she was losing her mind. I would consider that cruel. When she talked about my long dead pony I say something like, "Mum do you remember that time Jim thought Misty was going to attack him and he screamed like a girl and climbed into the rafters and then lost his grip fell into the hay?" She hadn't lost her long term memory and we'd have such a laugh about the old days.

When she was 65 she had a few moments of forgetfulness which I thought was funny at the time, now I don't because I'm doing the same thing.

I think slightly increased risk of late onset is not that bad a result tbh. Especially if it makes you adopt a markedly healthier lifestyle.

There would be no point burdening your parents with this. (I feed my parents green vegetable and turmeric soup when I see them: It's ridiculous really but it helps me feel better!)

This sounds like it's causing you some stress OP, and I'm sorry about that. You've been left to process this alone, and it's irresponsible.

Firstly, you really shouldn't tell your parents about the gene, for all the reasons everyone above has said. Genetic testing is complicated and the relative risks need to be properly explained by professionals.

But maybe there is no reason for you not to discuss your own health fears with your parents, under the guise of talking about the MRI scan, the feelings of forgetfulness you have been having and concerns you personally have for your own health.

Again, I would not mention the gene testing to them as without real understanding it only causes worry.

I wouldn't mention it. He's probably not going to suffer from dementia now, but he'll also know that you've got the increased risk, and he'll blame himself.
It's not worth upsetting them.

This is the reason why genetic counsellors spend a lot of time with people going through things like this and whether they really want the tests done. Largely it’s the impact on other family members - parents, siblings, children etc

I'm so surprised then that it was so easy. I literally had to watch some videos and that was it. I have talked it over a little bit, with my GP and she said the same as a PP, that I should turn it into a positive by increasing my exercise ( I walk a lot but that's it) and changing my diet.

It was 23 and me and my original intent was just to know my ancestry, the health part came later after I'd had an MRI done. I was so worried.

Do U actually know which apoe mix you have?

I thought the Apoe thing is a mix of genes, you need to know the exact combo in order to figure out the Apoe-indicated risk. OP said "slight"; just by in their 80s your parents' risk is already well above "slight".

There are three types of the APOE gene, called alleles: APOE2, E3 and E4. Everyone has two copies of the gene and the combination determines your APOE "genotype"—E2/E2, E2/E3, E2/E4, E3/E3, E3/E4, or E4/E4.

The raised blood pressure and subsequent anxiety of being given that information is likely far more damaging to health in terms of increasing stroke and heart attack risk, and with elevated glucose levels your DF already has significantly an increased risk of those.
Say nothing.

Please don’t tell them, OP. It will probably make them guilty when they’ve done nothing wrong. I don’t really think there’s much they can do at this age, just let them enjoy themselves.

I’ve heard that these companies are not always very reliable. Please try not to worry about it. The fact that your parents have reached their 80s in good health is great and hopefully they will have many more healthy years, as will you.

No one likes to think about their parents being gone. Perhaps it’s worth expanding your support network if you don’t have many friends at the moment?

No one likes to think about their parents being gone. Perhaps it’s worth expanding your support network if you don’t have many friends at the moment?

I am fortunate enough to have lots of lovely friends, but no OH which perhaps plays on my mind, as who will share my old age with me?

Mostly though I hate to think of life without my parents as we're extremely close and they're great company.

Was the MRI done privately? Was it ‘aged related atrophy’?

@Hairyfairy01 no it was NHS and it just said “no abnormalities but some shading which could be age-related”

Why? Does that make a difference?

To be quite honest, OP, I would be toddling off to the GP for a chat if I was you, if your memory gets any worse.

Having worked with dementia patients for years, there are measures which prevent decline: cognitive activity, good exercise and healthy diet. Also, some drugs which, if they catch the dementia early enough can slow down its progression.

I have never heard of the coconut oil and turmeric thing, and would imagine the evidence base for their efficacy is shaky.

There is no point in telling your parents now. If they start to show memory loss then get them to the GP asap. Then they can be referred to the memory clinic and be properly and extensively tested.

As it is you who is struggling with memory and has had this genetic test thing, plus scan anomalies, I think maybe focusing on yourself and getting your GP to refer you to memory clinic would be more helpful than worrying about your parents in their 80s.

Genetic testing through a private company is dodgy as hell IMO. You have minimal support, which has led to distress for you re your parents. Plus, a genetic database owned by a private company who can flog the data to whomever, could have frightening implications in the wrong hands.

TLDR: don't tell them, change your own lifestyle with evidence based recommendations, and see your GP re your own memory and scan. And DON'T worry.

Oh and age related atrophy is the brain shrinking as we age. Shading could be down to various things including plaques, which are protein build ups. My exH has had them since his 20s as he has benign MS (so no flare ups in 20 years or so). He has MRIs every few years and they haven't got any worse in 20 years.

Plaques can be evident when a person has dementia BUT even though, from my understanding, most people with dementia will have plaques, NOT everyone who has plaques will get dementia. They are the brain just doing its thing as we age.

Seriously, speak to the GP, ask for a referral to memory clinic, and put your mind at rest.

I agree with not telling them. My grandma is 99 with Alzheimer's. It was diagnosed within the last 7 years. When it became painfully obvious that she couldn't manage her own medication etc.

At their age, there would be little benefit to them to know. Knowledge may worry them and increase the speed of decline if they think it is inevitable anyway.

All you can do is watch out for symptoms in them and take action accordingly, encourage lifestyle changes according to other, known, needs and continue to care for yourself and make arrangements in case of the worst for your own future.

Hi OP I also had the test and have one copy as well. I have not said anything to my parents who are in late 70s and seem Ok cognitively. Like your dad mine is not the healthiest in diet. But then again general health and dementia risk etc, can be reduced in people in general not just with this genetic risk.

I wonder if you have any siblings. I told my brother, but mentioned he may not have it and anyway one copy is not usually as much of a risk in men as in women. He has not been tested.

My GP said similar to yours, 'lifestyle changes could help'. There is a website online APOE4 info - but I find it a bit USA centric and a bit too into lots of testing and supplements. I'm just trying a bed type diet, some intermittent fasting and lots of exercise. The GP tested me at 40 yrs check and cholesterol and blood sugars ok. I have cut drinking to a single small glass of wine at weekends.

My granny had dementia and I remember that but so far other family seem OK. I had my test with 23andme also

I'd be assuming that your DDad is the one without the gene, as he's stillfine despite poor lifestyle.

The gene is an association, not sure-fire thing, and your parents are in their 80s and asymptomatic. Lifestyle changes might not make much difference to them (as it can take a few years to reap much benefit) but could be important for you.

But I'd tell them. They're adults and can take it. And can decide for themselves whether to make changes or not.

Ao important to tell siblings and idc DC

I'm assuming mine is from my mum's side as her mum had it, but then not sure about dads as his parents died quite young of other things. Around a quarter of people have it so quite common

And also people without it still get dementia too so it isn't simple.

I'm glad to read you've decided not to tell them. It would be very unfair to drop this on them without their consent. Also, some people respond negatively to news like this and make it a self fulfilling prophecy by thinking, 'fuck it, if I'm doomed anyway, might as well enjoy the ride' and drink/eat/smoke themselves into oblivion.

If it helps, there is a school of thought that people aren't really meant to live as long as they do now and we'll all get dementia eventually if we live long enough. For some people that age is lower than others, but not all related genes have been identified, so even if you did not have any of the dementia-related gene variants we currently know about, that wouldn't mean you won't develop it, you just wouldn't have suspected it was going to happen until it did.

Your parents haven't chosen to know this information, unlike you. I think, ethically, you can't tell them. They may not want to know and you shouldn't take that choice away from them, particularly as as PPs have said they would gain minimal benefit from such information anyway.

Echo what PPs have said about the pitfalls of genetic testing in the absence of genetic counselling. It really shouldn't be allowed. OP, you haven't mentioned if you have a family history of late- onset dementia. If not, I really wouldn't give this a second thought. Exercise and healthy lifestyle is good but I also wouldn't get hung up on the turmeric/ coconut oil etc, it just won't be evidence-based.

Thanks so much everyone for your advice. It means a lot to me that so many have responded.

I have categorically decided not to tell them. It’s very hard as I tell them everything but I couldn’t bear to hurt them. Probably the reason my dad is still ok is down to him being male and the fact that he plays the keyboards daily (albeit very badly!)

Regarding my own worries I’m not sure if my memory lapses are anything to worry about. It takes me a few seconds longer to remember shopping lists, actors’ names that kind of thing. It may be the peri menopause , it may be the worry, it may be something worse. I will go back to the doctor though as she offered to do a test on me if I felt worried.

User87 I will check out that website. Sorry to hear you’re in the same boat. We can only do what we can do and in a way it’s a positive thing to find out early so we can do something to help ourselves.

Thank you lovely mumsnetters. You are terrific.

Agreed- there can be conflicting info anyway (e.g. coconut oil is high in saturated fat) and it gets really confusing- it is easy to get bogged down in it all.