Watching your loved one suffer from dementia are there any changes you make to your lifestyle which you think might help minimise your chances of getting it?

[millymog11]

Do you do anything?/have you given up anything?

My mother has had chronic dementia for 10 years now,her own mother (my grandmother) had it. If like me your loved one's dementia runs in the family is there anything you have tried to do to minimise your chances of getting it?

Angrymum22 · Today 14:28

Thank you for your post that is incredibly interesting.
I was treated for (and put through early menopause) oestrogen positive breast cancer. I was put on letrozole then anestrozole the effect of which is (I understand) to eliminate oestrogen from your body and I could not take it, it was so brutal, I felt like I was 85 years old (I am 45). Eventually my oncologist put me on tamoxifen instead which works in a different way and lets some oestrogen to circulate in your body.

My mother (and her mother before) have/had sever dementia (my mother onset about 65) and I asked my oncologist about HRT and he looked at me like I was the most stupid person on the planet so that was the end of that conversation. Its ok, I can suck up the side effects of early menopause without HRT but if someone proves you can delay/prevent the onset of dementia by taking HRT I will be mighty pissed off.
Its all a balancing act tho isnt it and its about quality of life in your later years. Having been through cancer treatment I really do understand people who, for whatever personal reason, listen to their consultant/oncologist and say "no, I am not doing that treatment, I would rather have the quality of life instead of the brutal nature of that treatment". it is a very personal decision tho so I do respect any decision anyone makes on that kind of thing.

crimsonlake · Yesterday 10:37

that is very interesting thank you for posting.

Do you get to understand your patient's life history much in your role? Do you think periods of extreme stress in their life history has any bearing on whether someone gets it or not (following on from a previous poster commenting about the brain wearing out, i.e. if you endure a period of very extreme stress at some point in your life that has a long term bearing on the brain).

Possibly about the same - 3 of her siblings succumbed in their late 70s or early 80s, and one of those was male.

I’m convinced there was some common factor from when they were growing up, but that former official theory has been discounted now - it was to do with aluminium. Their mother had all aluminium saucepans and there was a huge garden with loads of fruit, so there was always some sort of (acid) fruit, e.g, rhubarb or gooseberries, stewing in a aluminium pan.

A much younger sibling who moved from that house to live with an elder sister while still a child, is now 90 or 91, and still hasn’t succumbed.

millymog11, I personally do not think stress in a persons's life has any bearing on who gets dementia. I meet people from all walks of life, I think it is the luck of the draw and simply random. It is worrying that people are presenting with symptoms of dementia in their 50's and as I said a high percentage of dementia sufferers are women. Possibly this is because women life longer, whatever the reason it is no way to life.

crimsonlake · Yesterday 18:37

thats very interesting thank you for your update.
I accept that a lot of "lifestyle" factors including stress might be a myth.
However as both my mother and my grandmother had advanced and prolonged dementia I do wonder whether there is a genetic element to it.

Definitely, it’s a very strong link.

Having said that, it isn’t as easy as just getting a hearing aid. Hearing aids are incredibly difficult to get used to. Your brain has to learn hearing all over again because the sound you hear through hearing aids is nothing like natural sound. It’s absolutely miserable at first. It must be even harder for elderly people.

People seem to think it’s like getting glasses - I have glasses which give me 20/20 vision and there are few downsides and little discomfort from wearing them. Hearing aids aren’t like that, they don’t restore normal hearing, ever. They can only improve hearing somewhat, hopefully enough for the wearer to cope better with daily life. I have a severe hearing loss, have two powerful digital hearing aids, and still can’t hear conversations very well. Music is horribly distorted, and loud noises are excruciating. Earmoulds can be very uncomfortable and hard to wear for long periods even if they’re properly fitted. When people on MN say “tell them to get a hearing aid!” or get frustrated that their relative won’t use one, I’d like them to experience what it’s like for themselves so that they can be more empathetic.

Given that untreated hearing loss is proven to be a factor in dementia, I’d hope that hearing aid services would be improved. My experience is that they give you the aids and send you on your way, and are very bad at dealing with subsequent problems. If they can’t sort the issue by tweaking the programming, they just seem to shrug and tell you nothing can be done.

I did a course by Dr Nancy Lonsdorf on how to prevent Alzheimer’s. All her recommendations are backed by science (DH is a scientist and he did the course with me). Her advice owes a lot to Dale Bredesen. A PP summed up the advice well — avoid heavily processed food, cut out sugar, get plenty of sleep, maximise nutrition (includes taking supplements), exercise.

Of course there will always be people who do lots of things right but still get Alzheimer’s and people who do lots of things wrong and don’t get it, just as there are Great Aunt Mabels who smoke 80 cigs a day and live into their 90s, but lonsdorf and bredesen’s advice is about lowering your risk.

Oh yes, as a PP mentioned, intermittent fasting seems great as a preventative but also as a mitigating treatment for those who have cognitive decline.

There is a correlation between cardiac arrhythmias and vascular dementia. Atrial Fibrillation is very common yet there is no national screening program

Yes I was just coming on to say exactly that.

I will be making plans for Dignitas as soon as I am diagnosed with dementia or any other illness that I do not want to live with.

It is so sad that we can't decide when we want to die and that we have to die before we really want to by going to Dignitas.

Although it is from the daily mail and is annoyingly simplistic in it's write up, this is an interesting article.
My own mother who was incredibly fit and had noticable lower end of the range blood pressure suddenly developed high blood pressure and shortly after was diagnosed with dementia. Its still difficult to know whether things like that are a cause or a symptom tho, and if it is a cause it can only be one of many causes in any one patient

https://www.dailymail.co.uk/health/article-12690041/PROFESSOR-ROB-GALLOWAY-Like-people-greatest-fear-dementia-PROVEN-way-help-prevent-it.html

Massively misunderstanding hearing loss there!!

It's not just tv/radio, yes, you can turn up volume on those, but they're artificial.

You can't turn up the volume on birdsong, or trees/leaves rustling, or a dog barking or a dripping tap

Good hearing send all kinds of impulses to the brain, keeps the brain active by trying to identify and make sense of all the diverse signals it's receiving, particularly signals it's not expecting, such as a paper dropping through your letterbox or kids shouting playing outside.

By simply turning up the TV, you're making things worse, because the brain can lazily concentrate on the TV sounds because the TV is now drowning out everything else, so the brain does even less work.

That's why hearing tests and properly set quality hearing aids make a massive difference. They don't just "make everything louder" (well the cheap nasty ones do!), but quality ones are set to different frequencies to try to improve ALL kinds of sound, so they amplify some frequencies but not others, to get your hearing back to as near "natural" as possible, which enables you to still hear a bird tweeting outside at the same time as having your TV on a normal volume.

My grandmother didn’t get hearing aids till she was in her 80s and never really got used to them. My dm got hearing aids in her 60s as soon as told she might benefit from them. Dm wanted them early so she could adapt. I think there is maybe still a stigma about hearing aids, it’s not the same as getting glasses. My glasses fix my vision but hearing aids are not a perfect fix for dm’s hearing.

Apparently there is also a link between walking speed and dementia risk. Presumably exercise helps but also if you’re in poor health for other reasons that doesn’t help.

Like PP have said we maybe need to think of what we can do to delay getting dementia as opposed to reducing the risk of ever getting it.

@FictionalCharacter

Given that untreated hearing loss is proven to be a factor in dementia, I’d hope that hearing aid services would be improved. My experience is that they give you the aids and send you on your way, and are very bad at dealing with subsequent problems. If they can’t sort the issue by tweaking the programming, they just seem to shrug and tell you nothing can be done.

Better to go private and get properly fitted/adjusted hearing aids that are better quality.

I tried twice with the NHS. First time I tried, had to go back several times to get them to adjust the settings, etc., but gave up with them after a year or so. A few years later, hearing had got worse so I tried the NHS again. Same story, several appointments but they just faffed around with the settings, - if anything, the second, more modern, pair were worse. Both times, couldn't tolerate them for longer than a few hours, tried and tried to wear them all day, but they caused awful headaches due to random sounds, high pitch squeals, etc, so best I managed was a full morning or afternoon.

About a decade later, I bit the bullet and went private. What a difference! For a start, there was consistency with the audiologist - not having to see someone different every time and having to go through the whole explanation/experience every time. Also, all done in one appointment, i.e. hearing test, history taken, and able to walk out with a set of hearing aids, properly set - no need to keep going back as they were set correctly and I could wear them all day, every day, from that first consultation. I think it was a combination of better quality aids, together with an audiologist who listened to my experience/history and actually set them up correctly. Only need to go back yearly, always the same audiologist, happy to make slight tweaks as my hearing changes.

I'd never go back to the NHS. Staff simply didn't seem to know what they were doing - just forever "tweaking" the settings and often made things worse rather than better.

@user1497207191 I get what you’re saying about better service if you go private. But the hearing aids themselves are they same ones that the NHS buy. They are just given different names. Private gives you more choice of models, but most of them are for mild to moderate hearing loss- mine is very severe and there is much less choice. Which? did an interesting review of NHS vs private provision.

I think it’s dreadful that someone with a severe disability, who is completely dependent on these things to be able to function at work and socially, should have to think about paying thousands of pounds for what’s likely to be the same aids as the NHS provides (possibly a model behind in terms of features, but same performance) to get a sensible level of service. And to be treated in a decent way.

"paying thousands of pounds for what’s likely to be the same aids as the NHS provides (possibly a model behind in terms of features, but same performance) to get a sensible level of service"

user149 do you mind giving a ballpark figure of how much you had to pay to go private for your hearing consultation?

@FictionalCharacter

I get what you’re saying about better service if you go private. But the hearing aids themselves are they same ones that the NHS buy. They are just given different names.

No, they're really not the same at all. The private ones are a lot more modern with far improved tech etc.

The private ones are the "latest" generation, and the ones sold to the NHS are a "previous" generation. A bit like an iphone. With private you'd get the iphone 15, but with the NHS you'd get maybe an iphone 12.

I've had both - the difference is quite noticeable.

It's a bit like people who think the Heinz factory produces baked beans for Aldi too! Or that because your M&S sandwich comes from the same factory that makes sandwiches for Tesco, they've used the same quality of ingredients.

People buying private hearing aids aren't idiots. If there wasn't a significant difference, they wouldn't pay for private ones!

The consultation was £60, and if you bought hearing aids, the £60 was deducted from the price of the hearing aids.

My grandad had dementia so my Nan was determined she would not get it.. to the point of obsession.
Unfortunately she did get vascular dementia & as she'd always tended towards paranoia she got psychosis with it so she was far more unwell than my grandad who'd just been pleasantly forgetful for 11 years then passed away before he needed a care home.

I don't think you can actually prevent dementia as such but you can make some lifestyle changes that make it less likely.. eg my grandad had been a very heavy drinker until his 60s & smoked until his 50s so although he never got a proper diagnosis (too long ago) I suspect he had vascular dementia, which started at about age 78 although he was always very outspoken before that.

My gran never drank alcohol or smoked but ate a lot of fatty sugary food all her life, even during the war she was lucky to live in a grocers. She rarely exercised.
Her blood pressure was never high though & she never had diabetes.

She got diagnosed with dementia at 89 / 90 & got psychosis at 90.

My other nana got dementia too aged about 89 but it was basically pleasant forgetfulness.
She had been a heavy smoker until her 70s & was very overweight too, & had some COPD.

Her ex, my other grandfather (who I never knew) apparently died tormented with Alzheimer's aged 87. He had it for 10 years. He'd also smoked until his 40s, and drank but not too heavily.

So all 4 grandparents have had dementia!!
I'm 47 & forgetful but I have a serious mental illness & been on anti psychotics for 10 years which causes memory loss, also got epilepsy which again causes memory loss & am peri menopausal.