Elderly care and dementia

[powershowerforanhour]

Thought it deserved a thread of its own; left in FWR for continuity and because elderly care disproportionately affects women.
There are nearly a million people with dementia in the UK. 2 million by mid century. It costs the country twice as much as cancer but research spending is many times lower. There hasn't been an ice bucket challenge for dementia. There aren't heart wrenching ads on TV, at least not often. You're more likely to have heard of a Macmillan nurse than an Admiral nurse.
Why?
Possible reasons:

• People with dementia are usually old and therefore not good for a cute ad campaign
• Depression is quite common and, at the very end, even the physical ability to smile is lost leaving only a grimace. No upbeat "Let's kick dementia's ass!" No plucky heroes "fighting dementia".
• So far, a cure rate of zero. People can be snatched from the jaws of cancer and cured; people with severe spinal injuries sometomes walk again; people with heart disease can occasionally be on the verge of death and get a last minute tissue match, hero pilot flies heart in to be transplanted by heroic surgeons, tea and medals all round. Happy ending stories with "click to donate" at the end. Visits to the memory clinic to document the slow inexorable collapse of a living mind don't make a good story.
• Lack of people with obvious dementia in public. I see physically and mentally disabled people in public all the time, sometimes women with scarves over shaved heads, blind people with gorgeous guide dogs. When you take a relative with dementia out for the afternoon, a lot of effort is spent making the disease as non obvious as possible, and by the time it is well advanced there's no way they're even coming on a supermarket shop with you.
• Shame. When people in the coffee shop in town ask after dad, it's easier to talk about his arthritis and pretend that's what's stopping us bringing him everywhere, rather than the fact that if he recognised them at all, he would just repeat the same few phrases, possibly hug their wife a bit too long, try to stuff a whole slice of cake into his mouth in one go and drop bits out again, then need to be escorted to the loo and helped with his trousers.
• Fear, and denial. Dementia is common, and so could feasibly happen to any of us. You would think this would make all of is more interested in it. I think it does the opposite, because people fear the loss of their mind above all else. I'd rather have cancer and that's saying something (yes I have seen prolonged brutal chemo). I don't think I'd go to Dignitas if I had incurable cancer, probably wouldn't if I was paralysed in an accident. I'm pretty sure I will book my ticket if I get dementia. It is a lot of people's worst nightmare; you can do a bit to reduce your risk of getting it but you can't really predict or control it and if you get it, you're doomed. So easier not to think about it.
• It's mostly women doing the low paid or unpaid care involved, and they just put up with it.

Sorry for the massive post with no conclusion about what we as a society and as individuals should do. I have no answers. I don't hold out much hope for "get men to suddenly volunteer to do loads more of the unpaid care to ease the burden on women" or "use the imaginary money tree to pay the thousands of female care assistants more than peanuts".
I think euthanasia will be legalised in future, but due to financial imperative rather than for reasons of bodily autonomy.

I think the lack of research is because it is assumed that the people will be dead soon, anyway, so it is not considered worth it - that's stupid of course, in the other thread someone mentioned a woman who lived with dementia for 20 years - but I think it is one of the reasons. Closely tied to old people not being cute enough for ad campaigns.

Early onset dementia has been researched a lot more recently because Terry Pratchett was killed by it and donated enormous sums of money to research. That has sparked a greater interest in it as well.

One of the problems with dementia is that because the symptoms are so devastating, we hide it away. There is nothing quite as awful as watching someone you love and who has had an enormous influence on your life disappear before your eyes. I wouldn't wish looking after a relative with it on anyone.

I think there is a lot of stigma and hyperbole around dementia and very little done to combat this.

There is nothing quite as awful as watching someone you love and who has had an enormous influence on your life disappear before your eyes.

While I understand what you are saying I cannot understand why people (because although I am quoting you it is a common sentiment) think this is worse than watching somebody you love be eaten away by cancer, fear and pain.

Buffy

I agree with you and I would go further. We know that women are more likely to live in poverty when they are older, this limits their options for care and especially preventative care which is absolutely vital for coping with dementia.

I'm not sure I did say that though Miffer. I would however say that having seen and cared for people I loved deeply die from both, and if I had a choice, I'd go for cancer over dementia. And this doesn't diminish the horror of watching your loved one die of cancer, more that dementia has an especially awful way of doing things that makes it all worse.

That's what I inferred from the 'nothing quite as awful' part.

I really don't want to seem like I am taking issue with you in particular Xeno because I am not, this sentiment is incredible common. It just so happened you engaged with me. I am very sorry to hear about your loved ones.

As somebody who has also watched loved ones die of both (am actually experiencing this now) I would disagree. I honestly don't see why dementia is 'especially' awful.

There's still a stigma around it, similar to mental health issues. There's usually a big time gap between people suspecting they have a problem and seeking help from the GP. A lot of diagnoses are made after a physical issue pushes people into the path of a HCP (a fall or similar). Relatives tend to cover up for people with dementia and make excuses. These things don't happen with diseases like Cancer.

Work towards making society more dementia friendly is great because it allows people to see that they can still participate in life when they have dementia. I think a lot of people think if you get it then it's off to the home which is, understandably, scary for a lot of older people.

I think it's a feminist issue as it's predominately women who are the carers but I would think also the majority who are living with it as they live longer than men and it is more likely to affect you the older you get.

Just saw this and thought it definitely fits on this thread killing someone with dementia doesn't even get you a prison sentence if you're a middle class male and the victim is your wife

Right, best I don't engage anymore I'll just get angry and upset, and right now, I doubt I could deal with that.

Hyperbole though. Nice.

Hiding this.

Work towards making society more dementia friendly is great because it allows people to see that they can still participate in life when they have dementia. I think a lot of people think if you get it then it's off to the home which is, understandably, scary for a lot of older people.

Definitely, and the narrative of "better off dead" doesn't help. People with dementia are still people, they can still lead fulfilling lives. End stage dementia is devastating but, again, this is the same of a lot of illnesses.

It's a self fulfilling prophecy, the more fear and stigma we have around it the worse it is for everybody involved.

Dementia is a gendered issue for men as well. Men in the caring role, widowed husbands, or widowed husbands who go on to suffer from from dementia themselves, suffer a great deal, in part because of gendered societal expectations and shame when these can no longer be met. One can argue about whether this is a feminist issue or not - it comes under the "patriarchy hurts men too banner" perhaps.

Dementia is less attractive as a sink for research funding because people who have dementia are in some sense not the future, in the way that unborn children, children, and those of reproductive or working age are. In my view, society sells itself short massively by not investing in drawing upon what elderly people have to offer, whether they have dementia or not. My view is that money should be invested less in treatment of the biological processes that underlie dementia symptoms, and more in care, occupational therapy, mobility, memory and communication skills and aids, and so on.

FFS. How dare you call that link hyperbole. A man fucking MURDERED his wife and a judge didn't care because she had dementia. Women who live with abusive men (and there are tons of them) who develop dementia, have that as an added risk factor. Tell that murder victim, that it's hyperbolic to be concerned about the attitude that says if you have dementia, your life is less worthwhile than someone else's.

I have an aunt who has been recently diagnosed and it's a very odd time. OTOH, it's almost like for some of the time, she's escaped his control by simply not mentally being there. She even said so herself to me last time I saw her, when she was laughing about how he had said to her when she was lucid, that he couldn't get through to her the day

oops sorry, don't know why that posted then. Meant to say, he couldn't get through to her the day before. And she was telling me it as though it was some great victory she'd won over him. She's had so little power in her marriage, that she grabs at any small victories that present themselves to her.

But then OTOH as she gets iller, I worry that he'll have what he's always wanted, which is total and complete control over her with absolutely no escape for her physically at least. And all the while, he gets to present himself as her loving, devoted carer. Which of course, he is as well, by his own standards.

He's also finding that he has to learn to do things he's deliberately never learned to (ironing, how to turn on the washing machine etc.) and he's been surprisingly OK about that; I think he feels it's justified as she's ill, but the odd thing is that he still expects her to do the laundry when she's having a good day (and she wants to, because she feels that's her remit and she doesn't want him muscling in on her territory; he claims she gets annoyed with him for doing the laundry and I do believe him, because I think for her, those everyday things are symbolic of her hold on normality).

Anyway, rambling along, the upshot is, it's all very complex and sad even if you have a happy, fulfilling, functional relationship. When you don't, it's a massive can of worms which I'm only seeing a tiny bit of.

Thanks Buffy. I used to have fantasies that my uncle would die and my aunt could have a few years of freedom. Then about 10 years ago, I realised that by now, she couldn't exercise her freedom if he did die, because he'd diminished her so far that she'd probably be helpless without him. And now of course, she'll never be free of him.

"I cannot understand why people (because although I am quoting you it is a common sentiment) think this is worse than watching somebody you love be eaten away by cancer, fear and pain."

I think it's because we're aware that the person themself, as they were, would be so horrified by the loss of self. Cancer, fear, pain, agony etc., doesn't take away the sense of being yourself. Whereas (whether that's accurate or not) we perceive dementia and alzheimers as attacking the very thing that makes someone themselves - their memories, their ideas, their beliefs, everything by which they have previously identified themselves.

Whereas (whether that's accurate or not) we perceive dementia and alzheimers as attacking the very thing that makes someone themselves - their memories, their ideas, their beliefs, everything by which they have previously identified themselves.

To me, you could be describing what emotional abuse does to someone.

Basil I am so sorry for what your aunt is going through.

I am also totally confused as to why anyone thinks it appropriate to start a which-is-perceived-as-worse-watching-someone-suffer-from-cancer-or-watching-someone-suffer-from-dementia conversation on this thread .

Well, I guess it's because it's part of the "why is cancer research so high profile and well supported by fundraising events etc., while alzheimers, mental health problems etc., are the Cinderella services in the NHS " conversation. Why are there such differing attitudes to different diseases. All this is cultural as well, I remember a French friend of mine saying that MS is totally stigmatised in France , you couldn't mention it etc.

I watched my mum die of early onset dementia (brought on by a head injury which we'd initially thought she was recovering from, so specific to where the initial damage was, not Alzheimer's). It really was a living death

She had her memories but didn't care about them any more. She always recognised us but was no longer her. The worst was when you did glimpses of the "old" mum - but they were rare and actually those moments of self-awareness distressed her still more.

I wouldn't wish it on my worst enemy

My dad did make the decision to put her into a home. Fortunately, the fact that it was rapid onset meant that she didn't last long. When she started refusing to eat, we made the decision not to force her

Basil, yes, that makes sense. And yy to cultural differences. I have a vague recollection of reading somewhere [citation needed] that in an Asian country - it might have been Japan, or China perhaps - depression is a differential diagnosis for otherwise unexplained stomach problems, which sounds plausible to me. I have also read that in countries with less westernised attitudes to mental distress, people who experience psychosis are not feared nor excommunicated in the way that they can be here in the UK.

I did not know that about MS and France.