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.

We are hearing much more about it now than we ever did in the past.

Yeah, I think in a way it’s good that as a society we are almost there in terms of being able to talk about death. I always recommend a book called “Being Mortal” by a doctor who talks about how even doctors find it very hard to basically say “ sorry you’re gonna die” and therefore ( probably more in US because of insurance) offer treatments that don’t really add much to lifespan and may actually damage QOL. I think we also put pressure on people to “fight to the end” when maybe we’d be better giving them support to make peace with it and focus on pain management/ spending time with family, which possibly takes more courage. It’s made me think a lot about what I’d do if I got a poor prognosis.

We had no idea that he’d be up in the night, banging and shouting and demanding to go out at 2 am, or that he’d hide things and then go mad because he couldn’t find them, or that he’d ask the same question over and over (I once counted 35 times in one hour!) or that he’d refuse to bath or shower or wear clean clothes, or (worst) that the tiniest thing could precipitate a truly terrifying rage - he was still physically fit - so bad that I would have to leave the house and take the petrified dog with me. (I could go on.)

This is all very familiar. My grandmother wasn't physically fit by the end, because she refused food and drink - she was always about 8st her whole life but must have been 5st by the end. Yet she still managed to lash out physically with surprising strength, and would use anything she could reach as a weapon.

I am in my seventies and I think death was talked about much more openly when I was young. People did not expect longevity and three score years and ten was a commonly voiced expectation, even though many were living longer by then.
My grandmother and her sisters all got dementia and used to have amazingly long, circular discussions.
It was hard to manage the cognitive decline of my grandmother at home as my father was disabled and my mother worked full time.

I wonder what the decisions will be if we have another covid. it was a mix of not providing enough protection for the careworkers so they spread it (which was definitely wrong) and not allowing anyone to visit 'to keep them safe'.
I don't think I've heard anyone saying what the policies might be if it happened again. DB was in a care home, he got covid twice, once recovered fine, latterly speeded his demise (possibly, it was on his death certificate, with several other things). But being shut in a care home and prior to that a hospital with no visitors for months and months I'm sure speeded up his dementia.
I think allowing visitors and taking the risk of the 'most frail and vulnerable' dying earlier would have been kinder.

Speaking of covid, personally I'm scared that we may get massively more dementia as a long term consequence of almost everyone having had covid. It's too soon to know, I think, but it wouldn't be surprising, given what we do know about the effect of covid and other infections on the brain. Somehow most people seem to assume that if almost everyone gets a thing it can't have long term consequences - but that's backwards; if we grow up with almost everyone getting a thing then the long term consequences are normal to us (if having some particular kind of common cold some time in your life doubles your chance of dementia, we wouldn't really know, because we don't have a population of people who've never had that common cold to compare with). Covid is new, though, and may have new long term consequences we haven't seen yet.

Totally agree. Their mental health must have been shot. It was horrendous. I'm so sorry about your db.

I wonder how much vit D has to do with dementia and health in general? I know they're now encouraging people to take supplements. Does anyone know the statistics for people in hot countries vs countries with less sunlight?
Two of my relatives, let's call them J and K. Both female more or less like twins to look at. Similar age. J sun worshiper, had occasional drink, didn't smoke, except occasionally. Diet was ok but pretty poor last few years.
K kept out of sun, strong sunscreen. Very active ate low fat. Didn't drink or smoke.

J lived late 80s had health problems but no dementia died of old age. K died early 70s got Parkinson's had a horrible ending.

I just wonder what was the point? She was so careful. It was horrific to see her like that. Haunts me now years later.

Probably nothing to do with it but I wonder about vit D. Fat helps vitamin D absorb. J never avoided fat though stayed slim. K was obsessed with low fat and became extremely slim at times. Plus avoided sun. Neither took extra vit D as it wasn't known about as much then (a few years ago)

One thing we can all do is at least to put a power of attorney in place in plenty of time, and add a paragraph about your wishes re no ‘striving to keep alive’.
Dh and I have added this to ours, as well as making sure that dds are well aware:

‘If I should develop dementia, or any other condition where I am 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.’

@IncognitoMam , TBH I wouldn’t be surprised if a lack of Vitamin D is eventually found to be linked to various diseases. This is from personal experience of different diseases in people who I’ve known to be long-term avoiders of sun.
My DM was certainly one such - being very fair and prone to burning, she’d always kept out of it, but it was more marked after my DF died and she became almost agoraphobic too, not to mention sociophobic - unless someone was with her she avoided leaving the house as much as possible.

HRT might protect women against dementia and yet the research is so slow in this area. It is happening. What shocks me is that the dementia charities seem to be very slow to engage with the conversation around this. Yet more women get dementia than men - even taking out the longer life expectancy. HRT protects brain cells. More women need to know this and there need to be HRT products that all women feel safe to take.

Did your DM get dementia? Sorry to hear that she didn't go out, she must have been very unhappy.

https://ucalgary.ca/news/taking-vitamin-d-could-help-prevent-dementia-study-finds

Just googled and Canada has already been studying the link between vitamin D and dementia.

I think with HRT (and I am currently on it) it's the issue with disentangling whether it's the actual oestrogen or progesterone which has any effect, or the fact that many women feel that HRT gives them their "oomph" back and gives them the energy to exercise, the confidence to create a good social life etc etc.

I had to come off hrt as got silent migraines. They went when off it. I'm at the menopause clinic next month but doubt they'll have any alternative? I'm taking natural supplements and doing ok. It's good you're being helped.

HRT helps with all sorts of cell protection (hair, mucous membranes etc) so I can see the logic why it helps brain cells and the various brain protective sheaths. If it helps with ‘oomph’ and getting outside that’s definitely a good thing.

Interesting that some have posted about the link between sunlight and dementia. I’ve seen this talked about too in relation to Parkinson’s. There are several studies that show a link between low Vitamin D and lack of sunlight and higher risk of Parkinson’s. See this one for example:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4808871/

I think our indoor sedentary lives under artificial lights is having a detrimental effect on us all in terms of health in general as well as brain health. I believe we are so far removed from our natural environment but it’s so normal now we have forgotten what normal for a human actually is.

That's really interesting echt. Thanks for sharing the links.

@IncognitoMam , yes, she did, but it wasn’t the not going out that made her unhappy. TBH she’d never really been happy ever since my father died. He was the jolly, sociable one - she was happy to go out with him because she could ‘hide behind him’, so to speak.

But she lasted over 25 years after he died - to 97. 🙁

Just to add, my DM was on HRT literally for decades, so in her case that was certainly not a dementia-preventive factor.

How awful. Just no life is it 😞

In my family the women who did take it lived longer and didn’t get dementia so hard to know. Genetics etc will be a factor too and other lifestyle factors.

I was suprised when I had vit D tested as part of full bloods. It was 44 which isn't terrible but is sub par. I had also taken multi vits 4 or 5 times a week. I have since used the mouth spray daily and was up to 76 at beginning of June (so 5 months) - when I saw the neurologist back in December she stressed to take high level vit D daily post menopause

Previous dementia drugs have just treated symptoms.

The new drugs that have been approved in the US are disease modifying, removing amyloid from the brain, significantly slowly down the progress of the disease.

These are just the first generation of the new drugs. Better ones will be developed.

The drugs work best if started early and blood tests are being developed for early detection.

In 10 years time annual blood tests for Alzheimer’s could be standard for people over a certain age and then treatment could be started so the disease never really becomes symptomatic.

That's fantastic though. Being tested could have saved you from allsorts of problems later on?

Such great news!