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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To find dementia statistics frightening

208 replies

Collins567 · 19/07/2023 08:24

Having done some reading yesterday , it was stated that approx 1 in 1000 under 65s will develop it. That's really quite a high number, pretty much one pupil from each high school roughly.
After 65, that number shoots up, I think it was 1 in 20, which is terrifying.
65 is really no age at all.
I am thinking about Fiona Phillips who has recently revealed her diagnosis, and I have known of a 56 year old lady with late-stage dementia.
I have worked in dementia care homes so know exactly what it is, I have seen a lot of things that wouldn't be very pleasant to describe.
It just seems like a bit of a lottery. My Grandma currently has it and my other grandma who is no longer with us was starting with it before she died at 84, she became vey paranoid.
As it's in the family, it makes me even more worried.
I don't smoke, don't drink, exercise and so on.
Does anyone else worry about this a lot? I know there are now treatments which are supposed to really slow the prognosis but still no cure.

OP posts:
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Sugarfree23 · 19/07/2023 22:11

RudsyFarmer · 19/07/2023 09:13

I honestly think we should have the right to be put down once we get a diagnosis of dementia/Alzheimer’s.

Couldn't agree more.

You'd be jailed if you had a dog who was doubly incontinent, who could barely move out their bed, and who was being spoon fed.

Sad but true, their care costs an absolute fortune too, whats the point?

Divinericepudding · 19/07/2023 22:16

TotalllyTireddd · 19/07/2023 17:45

I used to be really scared of dementia. But when my mum died of heart trouble (and went from bright and chatty and v alert to dead v quickly etc..) I realised then that actually dementia gives children a chance to gradually let go, to prepare for death, to loose their parent over time and in the end, maybe even be grateful for death.

For that reason I'm now no longer fearful of it because I know it would mean my death wasn't a shock for my children and they would loose me gradually. Obviously dementia in a loved one is hard to watch, but it's no longer a fear of mine.

Honestly can't believe you actually typed that out.....

echt · 19/07/2023 22:17

Sad but true, their care costs an absolute fortune too, whats the point?

FFS.

echt · 19/07/2023 22:18

Divinericepudding · 19/07/2023 22:16

Honestly can't believe you actually typed that out.....

It's her perfectly valid view point.

Divinericepudding · 19/07/2023 22:23

illiterato · 19/07/2023 20:43

There's a newish book called Longevity which talks about the Four Horsemen of Old Age- Cancer, Heart Disease, Diabetes, Alzheimers. Basically, the advice is to do a fuck tonne of exercise as that massively impacts all cause mortality more than pretty much anything else you do.

Any chance of a link to the book please? Search comes up with many books referencing the Four horsemen, thank you

illiterato · 19/07/2023 22:27

Divinericepudding · 19/07/2023 22:23

Any chance of a link to the book please? Search comes up with many books referencing the Four horsemen, thank you

sorry - it's this one and it's actually called Outlive. It is somewhat US centric so makes certain assumptions about healthcare (like annual medicals being a thing) but a lot of what it says makes a lot of sense in terms of if you want to thrive rather than just survive in your final decade, you need to start investing in maintaining your infrastructure Grin. It scared me into going back to the squat rack.

https://www.amazon.co.uk/Outlive-Longevity-Peter-Attia-MD-ebook/dp/B0BLBYCBQ9/ref=sr_1_3?crid=1PM2H7A202C5X&keywords=longevity&qid=1689801886&sprefix=longevity%2Caps%2C93&sr=8-3

Amazon link but I have it on good authority from my dad that you can get this at the library.

Farmageddon · 19/07/2023 22:27

echt · 19/07/2023 22:18

It's her perfectly valid view point.

Ni, it's vile and offensive considering she has no actual idea of having to care for someone they love who has dementia.
Dementia isn't the 'better option' for children just because we have to witness the awfulness for a more prolonged time, or just because it isn't a quick or shocking death.

Divinericepudding · 19/07/2023 22:28

echt · 19/07/2023 22:18

It's her perfectly valid view point.

I guess so but does seem incredibly naive as so many posters on here have outlined their awful experiences with Alzheimer's 😞

Farmageddon · 19/07/2023 22:30

Sugarfree23 · 19/07/2023 22:11

Couldn't agree more.

You'd be jailed if you had a dog who was doubly incontinent, who could barely move out their bed, and who was being spoon fed.

Sad but true, their care costs an absolute fortune too, whats the point?

Yes, we wouldn't allow animals to suffer in this way, for 'humane' reasons.

And yet we are expected to sit by while our very much love family members' lives are prolonged month by month, year by year for what? For them to keep suffering and to have no idea what is happening to them or why. It's barbaric.

echt · 19/07/2023 22:31

Divinericepudding · 19/07/2023 22:28

I guess so but does seem incredibly naive as so many posters on here have outlined their awful experiences with Alzheimer's 😞

She might change her mind should the time come, but equally those who'd like to take their own way, and I'd be one of them, might change their minds too.

Farmageddon · 19/07/2023 22:31

illiterato · 19/07/2023 22:27

sorry - it's this one and it's actually called Outlive. It is somewhat US centric so makes certain assumptions about healthcare (like annual medicals being a thing) but a lot of what it says makes a lot of sense in terms of if you want to thrive rather than just survive in your final decade, you need to start investing in maintaining your infrastructure Grin. It scared me into going back to the squat rack.

https://www.amazon.co.uk/Outlive-Longevity-Peter-Attia-MD-ebook/dp/B0BLBYCBQ9/ref=sr_1_3?crid=1PM2H7A202C5X&keywords=longevity&qid=1689801886&sprefix=longevity%2Caps%2C93&sr=8-3

Amazon link but I have it on good authority from my dad that you can get this at the library.

The author, Dr. Peter Atilla also has a good podcast on youtube.

bamboonights · 19/07/2023 22:36

Carpediem15 · 19/07/2023 20:27

My husband has Lewys body dementia with Parkinsons and is banging on the upstairs floor for me to go to him now. Just as I was going to start to read this. Might be back in 10 mins or tomorrow.

You have my every sympathy. At one point my mum was up 18 times in a night with exactly this. We're at the end stages now and it's the cruelest combination as my dad still understands what is going on around him when he can hear and is not in the confused state or hallucinating. Sending you hugs and strength as you'll need it. If it gets too much, tell social services you cannot cope any more. If they think they can get away with you doing any caring whatsoever, they'll let you carry on and offer minimal/not enough help. Seek help from someone with knowledge if you apply for CHC. They do everything they can NOT to pay out for this as they know it's a potential long term cost and even get bonuses when they don't pass someone for it by illegally scoring them too low on the assessment. The whole system is corrupt.

bamboonights · 19/07/2023 22:41

EffortlessDesmond · 19/07/2023 20:55

As things stand, I am unlikely to die from any of those, but almost everyone else I know (at 67) has a condition on that list.

Which is precisely why I'm going to use the equity in my home, one way or another, before I get to the ridiculous new pension age of 67. I appreciate it had to go up, but why wasn't it staggered instead of a massive jump from 60 to 67. I have chronic back pain now and will possibly be worse by then.

picturethispatsy · 19/07/2023 22:48

I have this in my family so I have an interest in keeping my brain as healthy as possible for as long as possible.

I’m currently reading How To Build A Healthy Brain by Kimberley Wilson. I’d highly recommend for those who are worried.

She says (as others have said in here) that’s it’s ‘type 3 diabetes’ ie an insulin disorder and that brain health is misunderstood even today. She talks about how it’s perfectly possible to look after the brain as an organ in the same way you’d look after your heart ie exercise, nutrition, (avoid those crappy UPFs) low stress, avoid alcohol, drugs, smoking etc. She also discusses the research around how poor mental health and stress affect brain health which is eye opening.

I’m understanding from it that thinking it’s a genetic condition you can’t do much about is wrong which gives me a lot of hope.

Collins567 · 19/07/2023 22:52

Well we value human life more than animal life, but it's the whole issue of capacity and consent which is tricky. I don't think Dignitas would accept someone who lacked any capacity.

OP posts:
TheWayoftheLeaf · 19/07/2023 23:04

If we get it we get it. All my grandparents did bar the one that died young. I'll probably get it.

It's a horrifying disease. But not much you can do about it.

GulfCoastBeachGirl · 19/07/2023 23:08

jeaux90 · 19/07/2023 10:58

For women the latest research indicates that HRT can reduce your chances of getting it by up to 50%.

This statistic gets quoted a lot on Mumsnet, but the actual impact of HRT on dementia risk has been the subject of many high quality studies with varying results. Some show decreased risk, some show increased risk, some are neutral.

Believe me, as a woman I'd like to believe that HRT is protective, but as it stands right now there is no consensus on this. Perhaps future studies will offer more clarity.

https://www.alzheimers.org.uk/about-dementia/risk-factors-and-prevention/hormones-and-dementia

Hormones and dementia

Learn about hormones and other reasons women may be more likely to develop dementia than men.

https://www.alzheimers.org.uk/about-dementia/risk-factors-and-prevention/hormones-and-dementia

HvalaALot · 19/07/2023 23:15

If you are worried then read about the Bredesen Protocol. A mixture of low carb, fasting and exercise amongst other things has shown to be effective

Moneynewpence · 19/07/2023 23:30

tescocreditcard · 19/07/2023 09:21

I'm off to Switzerland if i'm still alive at 80. I'll have a great big party for my 80th and a lovely day and then just quietly go a few days later, thinking about the party and my loved ones who were with me that day.

Yes. That's what i'm gonna do. The thought of lingering on for years with dementia is horrifying. I work in that industry.

What, even if you don't have dementia? How ridiculous. I've known active 90 year old getting fun from life still...

lilacsinbloom · 19/07/2023 23:38

Dementia rates have actually massively reduced over the last 20 years. However the large population group of the Boomers will increase case numbers, by the sheer vastness of the number of Boomers worldwide.

picturethispatsy · 19/07/2023 23:45

TheWayoftheLeaf · 19/07/2023 23:04

If we get it we get it. All my grandparents did bar the one that died young. I'll probably get it.

It's a horrifying disease. But not much you can do about it.

Actually evidence points to the fact that you can do something about it (in terms of prevention).
The brain is an organ just like the heart or lungs and we can look after it in a similar way with lifestyle/mental adjustments.

As a starting point I recommend the book How to Build a Healthy Brain by Kimberley Wilson.

Titsywoo · 19/07/2023 23:46

Another great book to read when it comes to preventing dementia is Why We Sleep by Matthew Walker. I found it fascinating and the science certainly seems to back it up.

milkyaqua · 20/07/2023 00:29

The University of Tasmania's Wicking Dementia Research and Eductation Centre regularly runs free online MOOCs (Massive Open Online Courses) on Dementia.

The Understanding Dementia course is available to do online now:

Understanding Dementia (2023-07) | The Wicking Dementia Centre (utas.edu.au)

Preventing Dementia is next running this October:

Preventing Dementia (2023-10) | The Wicking Dementia Centre (utas.edu.au)

EarringsandLipstick · 20/07/2023 00:38

pharmachameleon · 19/07/2023 11:00

Yep it's frightening. I've recently found out that as I have hypothyroidism I'm at a much bigger risk of dementia. I work in hospital so see patients daily with dementia and it really scares me.

www.alzheimersresearchuk.org/thyroid-problems-in-later-life-linked-to-increased-risk-of-dementia/

That is not what the link says - it has not established correlation or causation as a result of the findings. It was just a survey - more research would be needed to make the claim you state.

Nat6999 · 20/07/2023 02:59

My Godmother died of dementia age 66, she had it for 10 years, it was awful to watch her fade from the lovely person she was. It is worrying to see how many younger people are starting with it, especially as in years gone by it was essentially an old person's disease.