to be terrified of dementia

[calmseeker]

I am in my mid fifties and my short term memory has deteriorated. Sometimes, possibly like people of my age I go to get something in another room and think 'what was it I wanted?' or I open the fridge instead or a cupboard then realise what I've done. I look it up and the internet (reliable sites) say its a normal part of aging. But every other day there seems to be 'new' things that predispose one to dementia - antihistamines (older versions), concussion, lack of sleep, solitariness and so the list goes on, Is anybody else terrified........ The worse thing is there is no cure and the disease is very scary.....

So anyone know how you tell if it's the start of dementia or just menopause/natural ageing? Are there specific tests to differentiate this? Can you chart your own deterioration by taking and re-taking specific tests and can you know that it's something more than ordinary senior moments?

If you knew you were in the very early stages of dementia and you believed in taking control of ending your life, when would you decide to do it?

I'm another one who had a parent die horribly of dementia and it was by far worse than the quick death from cancer of my other parent. I'm now in my 50s and forget stuff all the time - recently put a packet of cheese in the bread bin instead of the fridge and the bread in a carrier bag full of rubbish and loads of other things like this. There are chunks of my most recent decades that I've forgotten that I've actually forgotten about - yet my memory of being 3 years old, 6 years old, 11 years old, is really clear.

If I had to choose, I'd rather die in physical pain - but still being me - than gradually lose my self little by little.

That's an interesting question. Are there any specific tests?

Spinstar there are a number of research projects going on which are looking into this - not just looking at having participants take cognitive tests, but also taking blood samples to look at physical changes. One of these studies has been running since 1985 and is still ongoing. The participants in these studies also agree to donate their brain after they die so that researchers can look at changes on a cellular level. The problem with this research is that it requires very large numbers of people and a lot of time, so it will be a while yet until results are forthcoming, and then longer still before predictive tests can be developed.

And once we have the possibility of predicting who will and won't get dementia, there's the ethical minefield to consider - will people be made to disclose to the insurance industry, will they be able to get mortgages and other loans?

(My work involves study support in dementia research as well as mental health research btw)

My mum is 59 and has Parkinson's dementia. We were best friends, and now i can't bear to be around her because it's like a giant, fuck off great reminder every single second of what I've lost. She's existing, not living. She's said herself if she could actually manage to kill herself she would. She's at the point where she knows what is happening to her, she hasn't reached the oblivious point yet. My dad has lost any hope of the retirement they were going to have together. My son will never know his Nanny.

Mum devoured books like no one I know, did crosswords and word puzzles, knitted, sang and did all the things they reckon keep your brain going. Didn't help her. Im convinced I will get it too, and every time i struggle for a word i think "this is it". I'm 35. And i am planning to get my plans made now for what i want to happen when i get ill.

YANBU. How do you plan for dementia care?

YANBU but try not to worry too much. I've been doing the things you describe all my life and I'm only in my 30s now.x

flumpy. My Dad did all the right things too and still got bastarding Parkinsons and dementia.

My mum did all the right things too - never smoked, drank maybe a glass of wine a year, had thousands of books, ate healthily.

She can't read, knit, have a conversation, choose food, or recognise me now. For her birthday, she was delighted to have a toddler 'press the buttons for music' book .

So if one more person says about 'keeping your brain active' I shall scream. And possibly have a tantrum to get out the unfairness of it all

My dad also did all the right things. Loved crosswords, gardening, DIY, Was walking everywhere up until 2012. Then he had his first fall and was all downhill from there.
My mum died from cancer and it was all over within weeks.

CMOT, that's what my dad's Parkinson's doctor was telling him at every 6m appointment. Like that really helps ...if your brain is going to go, no amount of "brain activity" will help IMO.

Two questions if anybody can help...

Is dementia linked to smoking?

And, why do people need to save money for Dignitas, roughly how much does it cost?

My mum did all the right things in terms of keeping her brain active too.

I seriously also want to know how much Dignitas costs too.

No, it's not fair

And reducing a risk is sadly not the same as a guarantee that it won't happen

Dementia is FAR more than memory loss; it's such a complex loss of cognitive function and often also personality. It affects the ability to 'organise' your thoughts and memories.

One screening test used in Primary Care is the Mini Mental Score Examination - it is copyrighted, but there might well be a version floating around the interwebz. It is a screening tool so not necessarily diagnostic.
And very often whether somebody going a bit 'dotty' is just their age or the start of dementia becomes only apparent as time passes.

Here's a v simple test of how 'organised' everybody's mind is: take a pen and a piece of paper and draw a clock face.

Smoking has a very strong link to vascular dementia. Not sure about Alzheimer's.

No idea about cost for Dignitas.

I'm sorry I don't have anything valuable to add to this thread other than I'm so so sorry for everyone who has been affected by this awful disease - and at nearly 49 I'm scared too.

I wish everyone luck and good health.

At the same time, it's been found smoking decreases your chance of developing Parkinson's. There's no escaping it. There must be something in your genetic make up that makes you susceptible. I can remember being 10 years old and seeing him do strange things out of the blue like mixing dessert with main dinner...it frustrated my mum. It must have always been developing from age 50+. Probably even earlier.

Apparently about two years ago it cost £5-7K.

That's in addition to taking out membership of Dignitas before making the request.

Someone on Mumsnet (can't remember who) expressed so clearly that medical so-called advances were being applauded whilst the concomitant fallout on society being unable to cope was not being recognised at all.

Watching with interest.
My paternal grandmother got Alzheimers very early.
It scares me a LOT.

I've been out today. Had time to speak to my siblings about my mum as it is a question of what we do next.

Mum believes she is fine. She thinks everyone else is lying when they contradict her. She is upset because she thinks people have stolen from her or that she has lost stuff or that the people have let her down - when it is all in her mind.

She thinks she is coping - but she isn't. She never goes out, isn't eating, the house is dirty, her clothes are not quite clean, she "pesters" her lovely neighbours. She no longer reads or knits and cannot follow a conversation. She is getting very difficult and obstructive.

But I read all your stories and see that we have a long way to go yet - and that is so distressing. I love her and I am trying to look after her as best I can but I know that I won't be able to care for her full time and I dread that. She will hate it and yet be powerless to do anything about it.

Usefull inks on here though - thank you all.

My gran did everything 'right', she had the healthiest diet I know, never smoked or drank, walked everywhere, did cryptic crosswords and read books constantly including dense, academic type books (she was extremely clever). She is now on a locked dementia ward in a care home. She has no idea where she is and how she got there, every day is Groundhog Day to her so it is very frightening for her. She has no memory of me even though she brought me up, I love her dearly and we were really close. She constantly threatens suicide and gets no joy from anything. No-one visits her except me and my husband. However, even this life is 100% better than the previous four years when she lived at home, refused diagnosis or help and accused me of trying to steal from her and harm her. YANBU, dementia is horrific.

I have just lost a good friend he was 81 he had vascular dementia, I used to visit him in hospital he had depression due to it.
I never visited him the last 3 years in the home as I was upset the last hospital visit he was a comic artist and he grabbed my hand and said I can't see the funny anymore
The next time at home he was not him anymore it was heart breaking
My Grandad also had vascular dementia and a total different experience he after a life of being serious and quite frankly cold, although my aunt who is only 6 years older than me said no one made her laugh as much as he did, and yes I saw his humour he could just in a line, crack me up, but it was rare, he was driven, owned a business he sold at 68 to a major company and retired! But he never stopped making money and planning, he was wealthy.
Then he got the dementia he softened he was funny all the time he had insight at times which he would make funny.
Some of my favourites, he used to say in the care home " the oldest living insert surname in captivity" one time he asked me what my name was and I told him, he said oh! I have a granddaughter called that, she's 7, why are you here, "grandad I am x I am your granddaughter!"
" bloody hell how old am I then, because you look OLD!" He then chuckled and said "this is great I am a time traveler you are 7 I saw you yesterday and I am 57 but you are now what 40? I can see its you, this is brilliant, now what age am I?"
Sometimes we would just play along with him as he would sometimes think I was my mum who was long dead.
I am a nurse and dementia is such a Hugh area, we don't know if we will be my Grandad or the lady who at 103 was locked in to the
Groundhog Day of when her husband was stabbed to death as they left the theatre in the 1950's or those that lose every part of who they are

The more you worry about it the more you think you have it. You don't have dementia, but because you're worried about it you just notice absentmindedness (which everyone has, even kids) much more than you normally would, like if you're trying to get pregnant you notice pregnant women or babies more

I'm very interested in the impact of our diet and the onset of disease. I don't think it's considered nearly enough.

There are a lot of theories that wheat/gluten and/or a high carb diet can raise the risks for dementia. Have a look. I eat very little gluten after looking into this (not just in relation to dementia).

Roonerspism - I agree. That's why I mentioned 'grain brain' at the start of the thread.

But it seems you and me are alone on this thread.

I don't know why the NHS is so slow to catch on about diet versus disease.

Lots of recent studies are debunking the high carb/low fat diet. Yet my daughter's school lunches are still high sugar/low fat processed crap.