To think that the reality of Dementia is misunderstood

[TheMustressMhor]

I think that most people cannot understand what the real day-to-day challenges are for relatives of people with dementia.

Until your elderly relative is diagnosed with this, you probably only have a hazy idea of the realities.

It has only been in the recent past that dementia has been given as a cause of death on death certificates.

AIBU to think we need to educate ourselves more?

Sorry Tokenismjest

Of course younger people get dementia.

There was a case in Australia a couple of years ago where a pregnant woman in her thirties had it. She died soon after the baby was born.

The younger you are when it starts, the faster it kills you, on the whole.

My mum has Alzheimer’s. It was awful at first. But with the right combination of medications she is much calmer and has a quality of life. We are nearly 7 years in from diagnosis. I don’t know when that will change. Presumably it can’t go in forever but the disease is not taking the pathway I had expected. Care costs an absolute fortune. Every penny of her pension propped up by savings, every months.

YANBU. It's horrendous. The level of intensive 24/7 care dementia patients need includes managing aggression, incontinence and doing everything for the person. It so often falls on a family member because how many can afford £4,000+ per month for care home fees?

My poor dad (81 years old) did it as long as he could. In the end my mum went into a home.

Every penny my parents earned has gone towards my mum's care, they had to sell their house, spend their entire life savings and only now it's gone is she eligible for any state support. So unfair my dad faces a penniless retirement because of the horrible illness.

I think it's the biggest ticking timebomb facing healthcare in this country.
The number of early onset cases is definitely on the rise but the system is woefully behind on provision for it... I had to hunt far and wide to find any care homes suitable for a mid 50 yr old with frontal lobe dementia. But I've spoken to so many people with experience of a friend or relative being diagnosed before retirement age.

And as for people with both dementia and a physical illness, requiring medical care as well as dementia care, well, to be blunt you're fucked! You can live in a nice dementia unit with specially trained (but not medically qualified) staff who can provide all kinds of props and stimuli for the mental health issue OR you can live in a nursing home where the staff can administer medication. But you can't have both.

It's a horrific disease in more ways than anyone can possibly comprehend until they personally go through it. I saw it when I was very young in my great grandmother, who went from a tough but loving woman to a vicious, nasty shell. My own father died when I was a teenager and due to various reasons I was the one who ended up looking after my nan, who developed severe Alzheimers after he died. My wonderfully, strong nan, reduced to a sack of bones, deficating on herself, asking me why wasn't her son there? Where was her son? Over and over and over, hour after hour, year after year. She remembered me, my dh, but forget almost all else. I can't even begin to describe the state of the council run dementia homes as well, it was utterly heartbreaking.

The problem is that everyone can't know the ins and outs of everything. I can tell you all about dementia and the different kinds, the ins and outs of CHC funding and all that stuff. I couldn't tell you about MND, caring for a child with cancer or other complex conditions.

I'm sure this is true, but it's also true of almost every serious disease or tragic event - nobody will understand the full reality unless it's happened to them or someone they are close to.

. The last stages ive seen are awful and a little boy with downs syndrome and late stage dementia in his 30s

He's not a 'little boy' with Down syndrome. He's a grown man with Down Syndrome.

It’s not only elderly relatives. It can be working age relatives too 😢

I was not allowed to see my great nan before she died as she has severe dementia and got herself into a state if me or my sister appeared.

This was because she thought my dad was still a toddler and she couldn’t comprehend he was grown up with his own children.

She was also nasty to her dil (my Nan) as she thought my grandad was her husband not her son, and was convinced my Nan was trying to steal her husband

It was awful.

I think there was a slight sigh of relief when she was passed as it was so cruel for her

It's a horrific disease. I lost my mum to it earlier this year. Alzheimer's was given as her cause of death. She officially had it for 6 years after diagnosis. She began to forget me about 5 years ago. The effect on the families is awful.

I spent a significant portion of my formative years with a GDM who had Alzheimer's, and who lived with us for years. It was a long time ago, but still my vivid go-to memory of it all is the mixed smell of bleach and shit. :( But honestly, I suspect that experience growing up would be much of a preparation, if one of my parents fell ill with it. It would be a whole new kind of hell, with a whole new set of sorrows and responsibilities.

Arrgh, I suspect that experiences would NOT be much of a preparation. ^^

Most people have definitely not heard of anything other than Alzheimer's. Even my mother, when my father was diagnosed, labelled it as such. It wasn't - it was Parkinson's dementia, which is a form of dementia with Lewy Bodies.

Most people also don't know about Korsakoff's, which is what did for my mum in the end.

I have watched my great-grandmother (Alzheimer's) and my grandfather (vascular) suffer with dementia as well, which is why I'm already making plans for my one way trip to Switzerland should it ever come to that for me. We need a lot more research, funding and support, but until then we also need a way out that allows us some dignity.

However, we also need to get away from this idea that dementia is normal and inevitable - it isn't. It is not the case that most older people get it.

Lastly, I would suggest everyone who is interested look up Join Dementia Research - I have taken part in 6 research studies as a healthy volunteer so far, so there is something you can usefully contribute to the cause.

My father had dementia , the Dr told us you don’t die of dementia , it would be either infection , starvation ( losing the ability to swallow ) or a fall

We were also told the only way to tell which dementia they suffer from , was after death , if there was a post Mortem

Dad died from a chest infection , we suspect he had Lewis Doby , as he had hallucinations, and was very agitated at times

He was in a nursing home for about 3 years , not knowing who any of us were , bed bound and incontinent , he could only eat mush and drink from a sip cup

When I hear people say , mums got Alzheimer’s , yet she lives alone and does her own shopping , I am amazed

That’s the reality we had , his death was a almost a relief , he’d gone long ago

It’s the biggest cause of death in the UK now. We all know about cancer but it’s likely to kill us than dementia. Of course we need to know about it so we can plan for the day we get our diagnosis. Having watched it devour my mum and spit the bones out, I’m completely determined I won’t go the same way.

I have my nan, just 2 weeks she from vascular dementia. It was a relief in many ways as we had grieved her years ago and now she is free from the cruelty of it.

When I worked in elderly medicine one of my colleagues said we need to start thinking of dementia as “brain failure”. The logic was that it’s just as significant a comorbidity and life-limiting as another failing organ (and just as hard, if not worse, to live with).

You would expect someone with kidney failure on dialysis, or liver failure, to be sick, in hospital a lot and to live less long than their well counterparts. This is also true of people with dementia.

When I hear people say , mums got Alzheimer’s , yet she lives alone and does her own shopping , I am amazed

This was my DGM. She lived at least 20 years since her symptoms first started appearing, and it was a slow disease for me, each state lasting years. So there was quite a long time when she still lived in her own home, alone, with a daily carer visiting and at least a daily family visit, with gradually the family taking on more and more life management for her. It was only once it got the stage that she'd wander out and would be confused and lost that that had to end.

I think that many people do not realise that a good many people with dementia develop aggression.

I have been kicked, spat on, punched and screamed at by countless people.

It really is heartbreaking for relatives to see this.

And I know one woman whose husband got vascular dementia, and he was very physically fit.

He would go for walks every day and get lost. Eventually she got to the point where she had to lock him in the house when she popped out to the shops for a few minutes, as she would not have known where he was if he had gone out without her.

She came back one day to find him removing a window frame from the inside. it was at that point that she had to move him into a home as she simply could not cope any longer.

What do PP think of Oliver James' "Contented Dementia" and has anyone tried to put the principles within it into place?

I have - with excellent results.

I think that the consequences of incontinence are often the straw that breaks the camels back for people who are caring for relatives with dementia.

That is probably a huge reason why some people consider nursing home care, even though they may have said that they would never do so.

We dealt with incontinence at home. The straw that broke the camel’s back was the succession of 4am phone calls because Mum had fallen and Dad (98) couldn’t lift her up again. It was clear they both needed 24 hour care.

The reality is definitely misunderstood. My dear Mum had dementia but we never knew what kind. It was heartbreaking to watch her struggle and try desperately to hide it. She was ashamed.

In the end she died of complications from the flu before she became bedridden etc., which I suppose was a blessing.

Resources for family are sorely lacking, even in Canada and the UK where we have publicly funded health care.

Frankly I have difficulty understanding how dementia care is not funded in the UK. Is it not considered a disability like everything else that leaves a person needing care?

I do believe that there is a blame the victim attitude that persists. The poster who mentioned older people having eaten "meat and veg" is an example. With respect, my Mum was extremely health conscious and always followed diet recommendations about cholesterol, heart disease etc. she was an excellent cook and fed her family home cooked and nutritious meals her whole life.

The blame the victim thing leads to apathy and complacency in the younger generations, who believe if they eat this or that, or don't eat this or that they will be immortal. It is too easy to say it won't happen to me, I know better than to eat x,y, or z.

I worry the same is happening with cancer. It is human nature to immediately look for a cause in someone's lifestyle which would explain why they got it and I won't. Sadly, the person with cancer was usually just unlucky enough to get a mutation that became cancer.

Humans have believed diet to be a key to health basically forever. Diet is important of course but it cannot prevent or explain everything.