To think this is the most awful thing to say to a parent

I wonder what % of dementia patients would have died from other things 20,30,40 plus years ago? That seems to be the downside of modern medicine that we now survive things that would have killed us to then be struck down with this awful disease.
My relative didn't have dementia but was a frequent flyer at the hospital - the other patients were in a pitiful state, and I do question the morality of treating for pneumonia/cancer etc to go on living with dementia.

That’s one person. They clearly left it too late to tell her.

Ah yes, that reminds me of my Aunt who worked in a shop. She told her daughters she often saw "poor old forgetful ladies coming in" looking dishevelled, unkempt and instructed my cousins to tell her if they ever noticed that in her. When they did she went ballistic and didn't believe them. That's the lack of insight

That’s why so many of us are hyper vigilant of ourselves and have asked our families to tell us if they notice any suspicious signs. There’s also a huge difference between offing yourself and allowing nature to take its course by not treating other illnesses.

Sorry I didn’t read your comment before saying the very same immediately underneath. You’re so right. Why can’t people see that what they say now is very different from the post-diagnosis situation?!

Funny how so many people are saying “here’s what my plan is” in the event of a dementia diagnosis and none of them are wondering why the many many people diagnosed every year (many of whom no doubt said similar things pre diagnosis) haven’t actually booked a cruise and thrown themselves overboard or taken an overdose or gone to Switzerland.

So many people saying they will end things while they are still lucid, this is what my mum said she would do. By the time she was knew, she was no longer capable of following through with it. That is why suicide is extremely rare in dementia patients.

No interest at all in them. My mum had drugs to help, they didn’t. She somehow knew to stop eating and drinking, developed a chest infection and went to hospital with sepsis
my dad hadn’t done POA etc despite me nagging but thankfully the hospital was sensible when we said no more antibiotics or treatment

I am frankly petrified about it as is my cousin due to the family history and we both have done the directive

I basically want to go out at the top and not start down the slope

I heard of a similar case in the Netherlands. Normally, people opting for euthanasia have the opportunity to change their minds right up until the last minute. It makes me very feel very uncomfortable that in some countries, people with dementia don't have that right. Yes, they probably no longer have capacity, but it's not possible to predict at diagnosis exactly how their dementia will affect them.

As other posters have said, some sufferers are usually content and may even experience positive personality changes. Also, as the condition progresses, a sufferer may move from an angry/paranoid/anxious phase into a much calmer one. I have seen this myself.

I have a horrible feeling this exact scenario is waiting somewhere down the line. I read a dystopian fiction series on this topic recently which, although fiction, felt worryingly prescient and believable. I had the feeling the author had spent a lot of time thinking about how society might treat the vulnerable in the future, especially with economic pressures in the mix.

I hear/respect what you're saying. I was curious whether you'd decline drugs like Memantine which can be effective in slowing cognitive decline, but logically I'd assume that counts as life-extending treatment too so I'm guessing not. From what I've seen of dementia in caring for my DM (and she's not even at the sharp end yet) I can totally see why people make this decision - I'm not honestly sure what I'd decide for myself.

And me. I will also be refusing the pneumonia vaccination when I qualify for it

With you all the way @walkingmyway. 💐

I don’t want life extending treatment at all. So if I have a chest infection after a dementia diagnosis then no, I don’t want antibiotics
my Nan and my Mum both had dementia (Nan Alzheimer’s, mum early onset) and I don’t want to end up like that. Would rather go a year or two early

same as if I have a brain injury and am unable to speak/move

Tony Scott had a brain tumor (acc to Wikipedia). That may present differently to dementia.
There are around 1 million dementia sufferers in Uk (google) and around 8000 suicides yearly among the whole population
I do not believe that the dementia sufferers are freely conspiring to inflict themselves upon their carers instead of taking a way out, sorry.

I have no doubt at all that assisted dying would initially have robust safeguards, which would be watered down within a couple of decades. It's terrifying. One comment that you've had enough, off you go

Sadly, I fear it will be introduced. But to save the economy, not to help the sick and vulnerable

It’s expensive, though. And a difficult thing to ask someone to do with you if you aren’t capable of travelling alone. There would be a much bigger uptake if you could do it closer to home.

Very few have the money to go through with it - it’s about £15k isn’t it?

A total of 651 british citizens have travelled to Dignitas since in opened in 1998. A lot of people blather on about making plans, but very few actually go through with it.

Thanks for the condolences. 🙂

In all honesty, I'm cynical enough (or possibly enough of a realist) to think so too re coercion. Depressing thought.

Thing is, though, the moment you're diagnosed with dementia and the moment (if it's even possible to pinpoint a single moment) when you lose capacity are not one and the same. In most cases the outcome of a dementia scenario is going to be starkly different from a massive brain injury, where you might die outright or soon after. Dementia can mean a very slow and gradual decline until the inevitable. Are you saying you wouldn't even accept treatment to maximise your quality of life in the interim?

I think it's personal choice, not resposibility, but i personally would in that situation. I don't want my kids to go through that, again. it's bad enough with their granddad.

I have done an advanced directive. No treatment from the moment I’m diagnosed with dementia and lose capacity, same as if I have a massive brain injury

It’s a huge worry for me. My mum’s family is riddled with it. I’m absolutely determined to avoid it if at all possible. A quick, sharp untreated dose of pneumonia would work.

And where does that end?

In Belgium you can opt for voluntary euthanasia in the event you are diagnosed with dementia, and this is carried out at the point you are no longer capable. There are numerous stories of how patients are held down and then euthanised against their will. In that instance I don’t care what someone has consented to while of sound mind, if you’re not of sound mind you’re not capable of consent, and so if you’re held down and euthanised that is murder as far as I’m concerned.

If you tell a bloke that you want to have sex with him that night and then get too drunk to essentially consent at the time it’s rape, because you didn’t have capacity to consent at the time of the act.

This is no different.

I think there’s a difference between that and giving life prolonging treatment. Too often we enable people to stay alive when they would essentially die naturally of the illnesses they contract, the heart failures etc, and what kind of life are you preserving then?