Anxious about getting dementia when I’m older

[Stumpedasatree]

Does anyone else feel like this? I am currently fit and healthy, nearing 50, but feel a massive dread of developing dementia when I’m older. I don't know how to minimise my risk either, apart from trying to keep healthy and active.

My nan had it and recently passed away, my dad now has early stages of it. Both had b12 deficiency and some say there is a link with that too.

I hope we start being allowed better choices about how we choose to leave this world more than what we have now cos I wouldnt want to go through it.

My nan died because of a uti infection, she was in pain no matter what they tried to make her comfortable and all the talk they made about she went peacefully was bs cos I saw her in hospital and she was in pain. I dont want that for myself.

I'm listening to Michael Mosley podcast on bbc sounds. It has some very good suggestions about how to make a few positive changes to improve health. Vascular dementia is more of a lifestyle problem whereas Alzheimer's is a more gradual decline over a longer time and you can make adjustments to have more help S you need it.
Live well is all you can do really

Also genes OP.

• The NHS offers genetic testing for people believed to be at risk of an inherited form of dementia, for example frontotemporal dementia or some forms of younger-onset Alzheimer's disease.

This. Just hit the kill switch.

Sorry to be really stupid but how does that help with dementia?

See the link posted by ICouldEat on page 2.

Having watched my DM go on to 97 with advanced dementia, I have a horror of it, too.
So (apart from lifestyle factors*) one practical thing dh and I have done, is to put our Powers of Attorney in place, with an addition to the Health and Welfare one, which states roughly,
‘If I should develop dementia, or any other condition where I’m unable both to care for myself, and speak (with full mental capacity) for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

Others may disagree, but IMO there’s far too much ‘striving to keep alive’ of people with dementia and a very poor - and utterly undignified - quality of life. If I ever get to anything like the kind of stage my mother was at, FGS please just let Nature take its course.

*I would just add that I’ve known people with very healthy lifestyles and active social lives, develop dementia, so I do think a lot of it’s down to genes/luck of the draw. But IMO some people like to blame ‘lifestyle’ etc., in order to make out that it must be the person’s own fault. I certainly have an aunt who has said as much re my DM - but then she’s always been very outspokenly judgemental (the old bitch!)

Yes. My mum has it. Healthy, active. Did mental stuff. Did everything she should have done. Nearly 87 and being looked after by my nearly 84 year old dad. Three other relatives had it.
I'm healthy, eat well, do exercise including weights, can't bear the thought of retiring (am 50).

I just how they will make more breakthroughs before too long.

I could have written that. Whenever I read the recommendations to avoid it I just think that's what my mum did and she still got it.

Apparently your risk of developing dementia is around 5050 genetics/lifestyle. So definitely possible to do everything right and still get it, unfortunately.

I still feel it’s worth doing though, not least because everything they think protects you from dementia is also good for your health generally.

I agree with @GETTINGLIKEMYMOTHER about not prolonging life when all quality of life is gone.

My uncle feared it and did cross words, guzzled cod liver oil and vitamin d, ran, cycled, played instruments... He's got it.

I think energy better into getting legislation in that we can say, if I get dementia and get to a bed bound point where I can't self care at all and don't recognise any one... Very easy to prove... Then finish me off and put me and my family out of our misery.

Leave them with nice memories of me and my money for the next generation to live and enjoy!

@GETTINGLIKEMYMOTHER

I know others who have lived for years, feutol, bed bound in nappies, limbs curled in, unable to move, barely able to speak, didn't recognise anyone.

The small mercy was being bed bound after years of going out getting lost, setting fire to things and so on.

Why not help nature along.. It's heart breaking all around..

This is so ridiculous. What about the period where you realise you're getting dementia? How terrifying must that be? And how terrifying once you have full blown dementia and can't make sense of things any more? My mum had dementia for about 3 years before she died and for about 2 of those years she was very distressed for most of the time. Eventually of course she became an empty shell and just sat in a chair/lay in bed all day.

I find the concept of losing my mind terrifying. And equally terrifying is the thought of my loved ones seeing me that way.

Yeah my understanding is that dementia is like having permanent Hangxiety/ beer fear. No thanks. You’re not blissfully unaware.

My uncle died from dementia recently. He was slim, a high ranking academic, non smoker, non drinker, sporty. I think talk of prevention is not that straight forward. My dad, on the other hand died fairly young from vascular dementia related to smoking, so an obvious link there. Of the two, my uncle was 20 years older at time of death. Natural ageing is a factor in a lot of disease.

As others have mentioned, lifestyle may not make much difference. My mum worked, by choice, until she was 74. She walked everywhere, visited her sisters and socialised regularly and went on holiday with one of them. She was a whizz at the maths in Countdown (no writing it down either😆) and did puzzles every day. In fact one of the last photos I took of her (at 89), she was sitting on the sofa with her head bent over a magazine and a dictionary doing a crossword. Everything else had gone - she had even lost interest in eating. She was, it turned out, about a fortnight from death, and she was still doing puzzles. It's weirdly fascinating how it affects everyone in different ways. She never forgot me or DP. DP made her laugh and she still loved his crap jokes right up to the end! My aunt is 6 years younger and has Alzheimer's and she thinks her daughter is just some nice helpful woman who comes in to cook dinner and give her pills.

Mum was diagnosed with Alzheimer's in 2018, but the symptoms became apparent in 2010, the year my dad died. I reckon he was propping her up, so to speak, for some time. It took about 5 of those intervening years to persuade her to visit her GP. Most people are so scared and in denial when they get symptoms that there is a huge delay in seeking help and this makes things even worse.

Natural ageing is a factor in a lot of disease.

I reckon this is true. My mum and two of her sisters were diagnosed with Alzheimer's. Their mother died of cancer at 72, so quite a bit younger than my mum and aunts were when dementia symptoms started to show.

Good grief. I'm 62 and have got enough to be anxious about now without being anxious about something that might never happen in the years to come. I live my life for today. I could get run over by a bus tomorrow.

I have a neurodegenerative condition so I know my older years will be shit.

Take any actions you can now to plan for/mitigate (e.g. power of attorney, advance directives, talk to relatives about what you would want) and then....forget about it.

Best advice I had was if it's going to happen then there's no point worrying about it as you'll live it twice, and if it doesn't happen then you'll have wasted all that time and energy with worry.

@Boomboom22 , you’ve evidently never seen a dementia sufferer in acute distress - because of something that’s entirely in their own head.

Like the poor lady (80 odd) in my mother’s care home, who was often crying and terribly upset, ‘because my mother doesn’t know where I am!’ Or because she had to get home to ‘look after the baby’.
The staff were extremely kind, but nothing anyone said or did could comfort her.

Ditto my mother, who once dreamt that she and her cleaning lady had taken my father’s dead body in the CL’s car many miles away and just dumped it in a graveyard. She was in acute distress for over 48 hours, and nothing I or the cleaning lady said could reassure her that it was just a dream - triggered incidentally by something on TV the night before.

Such happenings are not uncommon with dementia.

I agree. I've heard this a lot lately. My gorgeous aunt knew about it. Even up to losing her speech.

It’s not simple is it? I don’t think doing puzzles makes much difference surely. My father was several years into dementia and he was doing a crossword every day no problems at all. A friend’s parent was the same.

The person I knew who had dementia relatively young (died aged 60) was very well-educated, intellectual and active. The other person was very clever in a practical way, always helping people fix things and cycled every day. It’s definitely (bad) luck of the draw.

Eat well, exercise, keep mentally active - aside from that it’s probably better to live your life free from as much worry as possible.

I have no worries about getting dementia. As my family members get cancer, so I’ll be got by that first. But even so - still the only things to do are eat well and exercise.

Avoid air pollution - a risk factor!

https://www.theguardian.com/environment/2024/jan/12/evidence-grows-of-air-pollution-link-with-dementia-and-stroke-risk

My dad had mixed dementia. When he was first diagnosed 7 years ago ( he died 2 years later) I panicked and thought I was doomed to go that way too. I signed up to be part of dementia research (called Join Dementia Research). I have been part of many different studies including a ten year one. I have chatted to so many researchers about their studies that I feel quite well informed now.. I have had a full medical check, two brain MRIs and follow up checks. Obviously it depends on the studies you choose to be on - you pick what you want to do.
Can't recommend it enough