When is someone with advanced dementia considered end of life?

[NikkiSkyyer]

My dad is 85 and has vascular dementia and Alzheimer’s. He’s been in the care home now for five and a half years. He is unable to walk, talk, or feed himself, totally reliant on staff. At what point would he be considered to be ‘end of life’? Also, if he was at that point, would be need to be moved into a hospice or can he stay where he is?

Hi, my mum was in a similar position for around 4 years before she passed I’m afraid. She had a major stroke and lost ability to swallow then was moved to proper end of life care. She received palliative care from the district nurses in the care home (morphine etc). Despite the horrors of dementia she had a relatively peaceful death. Sending love as it’s a hard path to walk

My DF is in a similar state. 92 with very advanced Alzheimers. He's been in the nursing home for nearly 4 years. He was put on end of life care 2 years ago, but is still living - barely. If he does get to "end of life" stage again, he'll stay in the nursing home.

If you're worried about this, or just want to know what would happen at that stage, it would be worth having a formal chat with the nursing home about it. We did that recently, and it was very helpful.

Your df has end stage dementia but the real
end of life stage doesn’t really begin until people start refusing / being unable to eat and drink, or an infection takes hold.

Does your df have any advance decisions made (by him or whoever holds lpoa for health and welfare)? What about a DNACPR in place?

If he’s already in a nursing home then they should be able to manage end of life care, but it does depend on their staffing levels and skill mix

I’m sorry @NikkiSkyyer it’s far from being an exact science and this stage can go on for far longer than we would wish for our loved ones.

End of life is a bit of a nebulous concept. It often refers to the last 12 months of life but people tend to use it to mean actively dying.

For someone with advanced dementia it can be hard to know how long they might continue. The signs that tend to point to things being more imminent (year - months) tend to be swallowing issues, repeated infections, reduced appetite and increased sleeping.

When someone is moving towards dying (last weeks - days) they may have very limited "awake" periods, refuse food and drinks, and then have changes in things like skin temperature/ colour (hands and feet get cool and can be mottled), eventually breathing changes (and for some people periods of aggitation).

Care homes are usually pretty good at spotting the signs and asking their GP to prescribe "anticipatory medications" - which are meds that help manage symptoms in last days of life. District nurses can come and give these if it is a residential rather than nursing home. There is no reason a person would need to be moved. Hospice care is really only if they have symptoms that are very difficult to manage (unusual) or if they have expressed a preference to die in hospice care.

It might be worth arranging to speak to the GP about a ReSPECT plan if there isn't already one in place and make sure "preferred place of dying" is recorded.You could also ask about the Gold Standards Framework (which is used to identify people who are end of life and colour codes for it the doctor expects someone to live over a year, months, weeks or days).

Take care OP, it is sad and hard at times.

Hospice is usually only for the last couple of weeks, or for a limited time to manage symptoms / meds (usually also 1-2 weeks).

In care homes they will keep treating every small ailment so you have to wait for something big and then the DNR will come into effect.

My mum died of delirium after contracting a uti ironically it all started a year ago today, she was 14 stone & had been capable of managing her own home, cooking & cleaning but within 24 hours she didn't even know where she was. She was in hospital until 26 November when they sent her home with carers 4 times a day, I was staying with her & it was the worst 36 hours of my life, she had become incontinent & came home wearing pads, I couldn't get her out of her chair & on to the commode, a male carer came for her bedtime call & she accused him of trying to rape her. I had to get my brother down to help me calm her down & in to bed, she wasn't eating despite me getting her exactly what she wanted. After 36 hours we had to make the decision to send her back to hospital, she had forgotten how to walk, she was getting aggressive & we had a battle to get her into the ambulance. Yet another uti was diagnosed & she was getting violent in the hospital, throwing a full jug of water at a nurse, they had to put a catheter in & she had skin infections from her incontinence. By Christmas she weighed 5 stone & the most she ate was a couple of spoonfuls of custard when someone fed her at visiting time. The decision was made that she would have to go into a home, it took a month to find her one that would take her, from what we saw she was got up & dressed then dumped in the day room, she had several falls out of her chair & an agreement was reached that if she fell ill she wouldn't be taken to hospital or given more antibiotics, she would just be made comfortable. By now she didn't know anyone & couldn't speak, her swallowing reflex had virtually gone, the day before she died she was asleep in her chair & she was put to bed before teatime, one of the night staff found her dead in the early hours of the morning on March 3rd this year. If assisted dying had been available I would have begged the doctors to help her on her way, she lost all her dignity & it wasn't the way she would have wanted to go.

So sorry to hear of your loss and experiences with your mum. Ive heard of this before how a fit and mobile person deteriorates in hospital. Going in there is a virtual death sentence for an older person.

Similar to most above, my mum drifted away over a few weeks. She was in a nursing home, had very fast vascular dementia. She ate less and less, became hollow-looking, slept more and more, then didn't wake up.

It was clear she was on the final stretch - it felt, instinctively, like she was departing; the staff gently made sure we realised. They were fantastic. It was peaceful for her.

For MIL it was when she couldn't swallow - we initiated DNR and Respect as she had no quality of life - she passed away without any needs for medication or a syringe driver. The staff knew she would pass away that weekend.

My father (with advanced dementia) was admitted to hospital on Thursday with a broken hip and chest infection ( care home hadn’t realised he had an infection, possibly the cause of the fall, possibly not)
Hospital operated yesterday morning, he come out of recovery onto the general trauma ward today. If he makes it out of hospital I can’t see how he will ever walk again, he has spent the last few years pacing the corridors relentlessly, it will be crueler to keep him bed bound.
I just want him to go peacefully.

I am sorry to hear that @1percentbatterylife . I take it hospitals have to operate on people with broken hips even if they do have advanced dementia and zero quality of life? Seems insane really. Why can't they just make people comfortable with palliative drugs and let them slip away?

'End of life' can go on for a long time IME.
My mother had dementia and was in a care home for 7 years. After 5 years she was said to be end of life and the 'just in case' pack was brought in. She lived another two years. During this time she could not feed herself, was doubly incontinent and immobile, but they hoisted her from bed to a chair so she could sit in the lounge.

I agreed with the care home manager and GP that she would not leave the care home. It was not in her interests to go to hospital as she was too frail, and there was no requirement for a hospice. After 7 years, she died in the care home.

We chose not to treat my fathers pneumonia and he died a few weeks later.
It was very distressing for him to receive treatment in hospital for the pneumonia as he didn't understand what was happening or where he was.
It's the right decision when the quality of life no longer exists.

Ime they do. But it is led by relatives.

End of life in healthcare terms tends to mean the point at which death wouldn’t be unexpected.

If a person is bed bound but still able to eat, drink, take medication etc then their death wouldn’t be expected by the team looking after them.

In hospitals it can be the point at which medication, food etc is withdrawn as it’s no longer helping the patient. A sort of recognition that the doctors are saying we’re on the last stage now.

MIL was in a care home for 5.5 years. Parkinson’s, dementia, osteoporosis. Immobile, doubly incontinent, unable to speak or feed herself. Hosted from bed to chair to shower to bed, what a life 🙄.

She got many chest infections. Antibiotics given each time (I don’t think anyone asked FIL / DIL and they probably wouldn’t have said not to). Eventually she got so frail that she couldn’t swallow them orally, and the home said that they were unable to give them intravenously. So they made her comfortable. I guess that was when she moved to end of life. She refused food, took a few sips of water, and slipped away after about 10 days.

My mum spent 6 years in residential dementia care. She was deemed 'end of life' when she stopped eating and drinking. She lasted a week from the doc stating she was at EOL.

If the home could have given IV antibiotics, they would have @Mixymaxymoxy. As you say, what a life. I just don't get it. It's like pro-life rhetoric and zealotry but applied at the end of life, rather than at the beginning.

You’re right, and FIL / SIL would absolutely have wanted her to have them. Because they didn’t want to lose her or deal with the grief. Not a thought of what her life was like, not a thought for her best interests. It’s so selfish. Sorry but it is. Even when the home had clearly told them that there was nothing else that could be done, SIL was still wanting them to give her water etc. She told me at some point that MIL had taken a couple of sips of water, so maybe there was still hope that she’d recover. I’m afraid my face betrayed my thoughts which were basically WTF! Just let her go. Be brave and let her go.

I thought dementia / Alzheimer’s was the one thing actually that you never could be given an official ‘end of life’ status for.
If this is true - which I thought it was - it’s a scandal. If you don’t want to pay for nursing care at end of life, I always thought therefore you needed to be sick with something other than dementia..
I hope I am wrong but my grandma was really at the end of life for years yet never given that status medically. Her care cost hundreds of thousands. At the end, she paid more for her nursing care than it would cost to stay at the Ritz.

Very similar to my grandfather, but he was in a care home for 9 years! Every few months we were called in by the home and told he didn't have long...it was bloody awful to be honest. We were prepared for the worst, then he'd have antibiotics administered, he'd pull through...rinse and repeat for 9 years. I know I sound awful, but it would have been kinder to just "let him go ". He had zero quality of life and was just existing.

I know, we didn’t get a say in it, surgeon told us what needs to happen, said it could go either way, they would have to try, then wait and see…

That's exactly it!

I find it very distressing to see my DF in this state - for years now!

The great push to feed him calorie dense mush was very upsetting for me as my DS was a low birth weight, premature baby who was tube fed, refused to breast feed, and very very very slow to bottle feed (which I got zero help with as bottle feeding = evil ). Basically, I got little to no help to feed a tiny baby at the start of his life, but there was a great effort to feed an elderly, immobile, severely demented and completely incapacitated man at the end of his life!

In their infinite wisdom, the hospital gave my mum a feeding peg. This is now artificially keeping her alive despite basically being bed bound, having no interest in anything even the radio or tv and being completely crackers mentally. It is so upsetting to see and I deeply regret them inserting the peg. I was against it at the time as I could foresee we’d be in this mess. She’d have died by now without it but we’re basically just waiting on a bout of pneumonia to take her out. It is very grim indeed but seemingly older people can live for a bloody long time with a poor quality of life. With my husband’s grandparents, two of them had dementia and it seemed to be the lack of swallow that eventually took them out but they both got to their 90s with dementia.

My mum is booked in for a flu jab. They looked at me like I was mad when I asked why as surely a good bout of flu would be much kinder than living like a bloody zombie.