To find dementia statistics frightening

[Collins567]

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.

My grandmother spent the last...I'd say 5-6 years of her life veering between terror and rage, spitting venomous accusations at everyone, having visual hallucinations, doubly incontinent. She forgot to eat, she must have weighed 5st by the end. She broke several bones, each of which required a hospital stay which made her worse, getting more immobile each time. She finally died of aspiration pneumonia over about a week.

About the same time, our very old German Shepherd lost the use of her back legs and became incontinent. She spent her last day in her own bed, being spoiled and loved, having all her favourite treats and told what a wonderful girl she was. In the evening, the vet she liked came to the house and painlessly euthanised her whilst we stroked and loved on her.

Something has gone terribly wrong here.

I cannot agree with this more!
My mum has huge issues with her memory. Most of the decline has happened as she refused to wear a hearing aid. She zoned out of conversations, meaning her brain was just not being stimulated.

@milkyaqua Thank you for the links. I've signed up.

This thread is really helpful. Thank you to everyone who has contributed.
I'm off to make myself some keto breakfast.

I'm screwed though. I've never managed much more sleep than four hours a night.

I'm on lifelong anti depressants and wonder if that raises my risk 😪

I didn't know that about Down's Syndrome, that's very sad :(

Make sure you make every day the best you can. Today is all we have.

Yes, but I realised recently that with something plugged into your ear you can here yourself eat - so eg at meals you won't hear the conversation so well. Also they can pick up and increase background noise eg traffic so people aren't just being difficult there are actually problems with hearing aids. So if they don't think they need them in the first place they may not wear them.

Oh dear. She did complain of this. I thought it was just because it was uncomfortable. I think with time surely you zone out of this heightened sense of hearing? I hope so. My hearing isn't what it should be!

I'm so worried about my Dad showing more and more signs of dementia, he's 80 and his memory loss and confusion seemed to accelerate after he had a major op for bowel cancer last year.

Can anyone recommend any resources like websites, books, organisations that can help inform me on what I can do for him? Dm says "there's nothing the doctors can do", and df just denies that he's confused and forgetting more and more. Is taking to a GP any use, can my df be assessed for dementia / how would we get a formal diagnosis? And can anything be done after diagnosis to actually help or treat the symptoms? Dm thinks not but hasn't even spoken to any doctors, I just want to know if there's any way we can help, rather than assume there isn't and then down the line things worsen when we could have done more for my Dad :(

From what I’ve read a keto/low carb diet could help to alleviate symptoms (not cure though), so if he’ll tolerate it that might be a good idea?

@TotalllyTireddd , if you’d actually seen a parent decline with dementia, you might well feel differently. My Dm was doubly incontinent for her last few years, no clue about anything, unable to hold any sort of conversation, not recognising any of her own family, every last shred of dignity stripped away. Especially in a person who’d been intensely private and fastidious, it was awful to witness. It’s true that she wasn’t aware and didn’t care, but we cared for her, because we knew how horrified her former self would have been.

An earlier death would have been much more merciful. Before a move to a care home was looking inevitable, I often wished I could give her a nice dinner and a glass of her favourite sherry, and tuck her up in bed - and have her never wake up again. Instead of which there were another 8 years of it, just getting worse, and often fretful, unhappy or distressed by things she couldn’t even name. And at first in the care home, quite unable to understand why she couldn’t go home, and angry with us for putting her there.

I have often envied a sister in law, whose parents died instantly, one of a heart attack, one of a stroke, both of a good age, without even having been at all seriously ill or lacking in marbles beforehand.

Many thanks!

My mum won't wear her hearing aids because she doesn't think they are hers. She threw them away after dad died as he wouldn't need them anymore. Poor dad had to take his out when they were watching TV as mum had the volume turned up so loud. Goodness knows how her neighbours cope.
She often doesn't answer the phone because she can't hear it over the tv. Has gone out and bought a new phone (landlines, doesn't see the point of mobiles) several times because it must be a problem with the phone stopping it ringing. Not good when I'm checking she hasn't gone out before driving for an hour to fill her pivotell.

I have often envied a sister in law, whose parents died instantly, one of a heart attack, one of a stroke, both of a good age, without even having been at all seriously ill or lacking in marbles beforehand.

I completely relate to this and, indeed, much of the rest of your post @GETTINGLIKEMYMOTHER Dementia is such a long, drawn out, progressive illness. My mum used to complain about the carers coming in and treating her 'like a toddler' and I would get a bit irritated by her complaints, especially when she refused care. Now she has the awareness of it not being quite right that people are washing and changing her, but none of the spirit left to complain. It's almost worse now that she endures it meekly.

💐💐

(I think I'm just trying to protect myself from my own fear)

I can relate to this with mil. She's on different hearing aids now waiting for them to arrive. Hopefully she'll use them. She keeps saying next doors dog is yapping all the time. It isn't it's in her head. She's starting to fall and really hurting herself. Refusing physio. Let's nurses in. We're at that awful crossroads of not knowing what's for the best? I even said we could buy a bungalow for us all but that takes so long who knows what state she'll be in? Our house isn't suitable for her. It's terrible.

That's my plan too. But we should be able to pass in our own country, in our own homes, with family, or a trusted friend (maybe two), who has medical power of attorney a doctor or GP's involvement and legal representative ensuring it's all above board.

Yes this dignified end should be available. My dog got a better more comfortable and comforting end than my parent.

Will Dignitas accept you if you are deemed to be lacking capacity in any way? Even if you've only just recently been diagnosed.

@Collins567 Yes, under certain circumstances. British people with dementia have ended their lives at Dignitas, but often sooner than they would ideally have liked, because you're up against the clock in terms of demonstrating capacity. If we had sane laws in this country, we'd be able to specify in advance at exactly what point we wish to be euthanised, so that those of us (like me!) who enjoy life very much but are staring down the barrel of a shitty genetic inheritance can get as much living out of it as possible.

This author's husband used Dignitas shortly after receiving his AD diagnosis:

https://www.npr.org/sections/health-shots/2022/03/08/1084912553/alzheimers-assisted-suicide-amy-bloom-in-love

So yes, he had a small window of time to go ahead with it.

I don’t know the answer to this, but a diagnosis of dementia doesn’t automatically mean you lack capacity, it’s actually quite complex in that you can be deemed to have capacity for some things but not others. My dad’s health/welfare POA only kicked in once a psychiatrist deemed him to have lost capacity. Fortunately we knew what his wishes were and he’d already made them clear both to us, and officially with his GP, who had put into place a document about his ceiling of care (there’s a name for this but it’s name escapes me right now-how ironic) 💔

Thank you for that - I will look into it.

Thank you for that - much appreciated as I had no idea about that and will follow it up tomorrow. 1.30 am and had one incident - 3 am another one and 6.45 another one. It wears me do ThaThankwn but there is not much I can do about it. Thank you again.

For all those of you whose parents are verging on diagnosis, please tell your local council as soon as you have a dementia diagnosis, because there's no council tax to pay once dementia is diagnosed. DMIL got a refund of £8k in council tax once DSIL connected the dots. I had no idea, but it meant two months free care home charges... which absorbed £150k over the three years she needed caring for.