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?

I doubt, for example, how many people know that dementia is an umbrella term for many conditions. Alzheimer Disease is well known, but many of the other kinds are not.

Yes massively.
We also need to stop forcing people to live with it and other life altering debilitating illnesses.
I had a small taste with DM it turned out to be a massive infection causing her issues but it was extremely difficult to see the fear and confusion across her face for those weeks.

I’m a nurse. Dementia is horrifically cruel for everyone involved.

So many ‘types’ of dementia but each one seems to be equally awful. It’s so hard to manage in a healthcare setting, let alone what it must be like for families who wish to care for their loved ones 😢

Definitely true. I’d heard of dementia obviously, but had no idea of the reality of it until my mam was diagnosed 6 years ago with Alzheimer’s. it’s a nightmare and heartbreaking.
I totally get why it’s called the long goodbye. I still have my mam, but I don’t have her iykwim.

I was aware there were different types, I have heard it is diabetes type 3 brought on by foods and lifestyle. I don't know if it is true I mean most of the elderly grew up on meat and veg dinners.

No, you need to live it to understand it. It is very, very hard and seeing a parent reduced to a stamping feed toddler with no logic, concern or empathy for anyone else is deeply distressing. Thankfully, my mum died 2 years in. Other people aren’t so lucky.

I work in the field and remember talking to my NDN whose mother was in Nursing Home because of dementia.

He would not/could not accept that it was a life-limiting illness.

I also think that many, if not most relatives struggle with the concept of telling lies to their parents in order to keep them happy.

For example - to tell your mother that her parents are still alive and that you'll take her to visit them tomorrow will undoubtedly make your mother happy. She will not remember that you made this promise anyway, so why not just say it, to calm her down?

You're so right. It's an awful, awful disease and I don't think people understand that carers actually work around 23 hours a day. It can rip families apart and the sheer stress looking after a relative is unimaginable.

I am a nurse specialising in dementia care. I agree dementia awareness is quite limited generally a especially common symptoms from specific types of dementia. I can highly recommend the virtual dementia tour as a training experience if you are ever offered the opportunity.

Watching the journey for the family and loved ones can be heart breaking at times.

I wonder if families are aware of the enormous financial cost of caring for a relative with dementia?

Or of Continuing Care Funding?

You're right that most people probably ont understand unless they have direct experience, but that's true of most difficult things in life like having a disability or disabled child, or being widowed, or having cancer or anything really.

I do think dementia is particularly cruel though, both for the sufferer and those around them.

I'm not sure there's a benefit to understanding what all of the terrible things that could happen to us are really like, we'd all end up living in fear.

I found it interesting that Margaret Thatcher's family were embarrassed to admit she had died of dementia.

My own experience is that many GPs are less than helpful when asked to prescribe medication which will help with the severe aggression and anxiety which some people dementia develop.

This is obviously not true for all GPs of course.

There are lots of conditions where people are ignorant of what it's like to live with or look after a family member unfortunately.

I'm a carer in a complex dementia unit. I've learned over the years about dementia but I don't think I would have a clue if I wasn't in this sector.
It is life-limiting, there is limit of around 7-14 years left of life after diagnosis.
It changes people beyond belief. I hear families saying this isn't my 'dad' or 'mum' , we only see a resident trying to hit us or shouting out things that don't make sense.
I think unless you are going through dementia with a family member or a friend, or work in the sector it's not something people know much about.

I work with patients who suffer from demantia. Theres so many different sorts and it presents in so many different ways. The last stages ive seen are awful and a little boy with downs syndrome and late stage dementia in his 30s still sticks with me. A horrible disease thats on the increase due to living longer.

@Currer
I'm yet to come across anyone (besides immediate family) that has heard of lewy body dementia. I've had to explain it so many times.

*I also think that many, if not most relatives struggle with the concept of telling lies to their parents in order to keep them happy.

For example - to tell your mother that her parents are still alive and that you'll take her to visit them tomorrow will undoubtedly make your mother happy. She will not remember that you made this promise anyway, so why not just say it, to calm her down?*

I used to work in a care home. I spent an entire shift once telling one lady that I couldn't land the plane so she could get off, because we weren't at the airport yet. What was the point in distressing her by saying we weren't in a plane?

I do wonder how many people still think it's just an exaggerated kind of absent-mindedness.

Admittedly as more and more people go through the nightmare of trying to find good care, this viewpoint is receding.

Agree that most people have not heard of Lewy Body Dementia.

YABU to state that only elderly people live with it. My Dad was diagnosed at 58. It’s a living hell for anyone touched by it.

Education is important but so is kindness. If I had a pound for every time someone said something awful, judgey or unkind to Dad (especially when he was in hospital) I’d be rich.

I completely agree with the posts on how horrendous dementia can be.

It's also worth saying that some people can have a good quality of life for many years after diagnosis.

As with any condition like that it truly is impossible to know the reality until you live with it. Even family members who aren't in the picture 24/7 never truly understand. It doesn't matter how much people read or try to educate themselves on these things, until you live it, you don't understand.