When is someone with advanced dementia considered end of life?

@NikkiSkyyer My mother was in a residential dementia care home and they routinely did end of life care, including for my mother (as I said above). So I wouldn't worry about your relative needing to be moved. There was never any mention of that at all.

You should be able to talk to the care home staff about this and express your wishes. By the time by mother had advanced dementia it was agreed between the care home, her GP, paramedics and myself that she would not be moved from the care home and would be kept comfortable there.

Many care homes can/will do end of life care if there are no medical needs that need a qualified nurse to be available 24hrs. When my mum was in her last week there was another resident also on her way out, and she was regularly visited by the district nurse to administer then meds she needed. The carers took it all in their stride and were wonderfully kind and sensitive.

my mums needs were still “care” rather than “medical”. Ie hygiene, skin care (repositioning in the bed every few hours to prevent pressure sores) and general monitoring.

The human body has an in-built shut down procedure. Dying is not necessarily a life event needing 24 hrs medical supervision, in the absence of any catastrophic injury, illness or severe pain needs.

The residential home may be able to cope with his needs as things go forward if his area have a good community palliative care team and / or district nursing team. Otherwise their staff may not be able to administer certain medication, particularly if they’re prn rather than regular if that’s what your df needs, ax they’re not qualified nurses.

I’m not trying to worry you unnecessarily, but it might be worth having these conversations in advance so that you know what to expect.

fwiw, my Nan passed away peacefully at a residential home but that was after a very short illness with a fabulous district nursing team.

Not if you gave a ceiling of care in place.

@NikkiSkyyer my mum was in a care home too and in the last few months she was in a very similar state to your dad. I had a good talk with the home and said I didn’t want her actively treated for any future infections and that I wanted her kept out of hospital if at all possible. That the family priority was mums dignity and quality of life. I was also quite firm that I didn’t want them to force mum to eat or drink. I was happy for them to offer and encourage as often as they wanted but I stressed that if she shook her head or turned away then I wanted them to stop. Some carers pushed the encouragement a bit but otherwise the home was totally on board.

Like others on this thread, mum had a stroke and lost her ability to swallow. She stayed in her care home and they took very good care of her and she lasted 8 days without food or drink. Fortunately she wasn’t in pain or agitated so didn’t need any of the end of life meds. End was very peaceful.

i think a lot of doctors go into a treat mode by default and families/next of kin have to be quite strong to push back and say that they disagree that it’s in their elderly relatives best interests. It’s also difficult if the family isn’t all agreed that it’s time to let nature take its course.

So sorry this is happening. Do you have a RESPECT form in place? An agreement on whether you would want your loved one to be actively treated for any illnesses, or only recieve palliative care?

My father had dementia for the last ten years of his life. We were lucky to be able to keep him at home, due to my mom's heroic efforts.

In the last few months he started developing lots of chest infections, having hospital admissions. They would clear up with antibiotics but he would become ill again as soon as he stopped taking them.

We agreed with the HCPs to stop treating the illness and allow him to die at home. At that point he also stopped taking and food or water.

He died at home over a period of around ten days. My mother, my brother and I were able to care for him - we had some support with twice daily visits from carers, and the district nursing team who would administer morphine and Valium when we asked them to.

I felt totally unprepared for the reality of caring for someone while they died, and to some extent still feel quite traumatised by it. (There are complications factors adding to this - I was in some ways the closest personnto my dad emotionally at the end, and feel I led the decision to let him die with dignity, which was of course not an easy one and I still struggle with it 6 months on, tho I fundamentally believe it was the right choice).

Please speak to the care home and g t as much advice as you can. I wish I had understood a lot better what the options were, and just what it would be like generally. For example I had no idea someone could survive for 10 days without drinking any water.

Sending love and strength - it's so difficult. Xxx

They can give nerve blocks and pretty strong opiates for fractured hips. I have seen patients with hip fractures and very advanced dementia who are not mobile not having repairs.

They have to because the pain would be intolerable without it. Your hip would sream with every slight movement

Gosh I have just read this after my post about ceiling of care. I am a HCP myself and this is just cruel. I do think Drs are increasingly not assessing quality of life but there are also many relatives who are in denial who request more aggressive medical management. It’s a very difficult part of medicine but an increasingly common one.

If they are already in a NH they would normally stay there as NH can provide palliative care very well.
My mother is 92 and has been like your father for 4 years. When this final stage started they took her off all prophylactic meds but she’s still here and feels like just waiting to die as she has no quality of life.
it’s very difficult to determine very end of life with dementia and very much depends on their ability to eat, so if they loose their swallow etc that normally pre determines it as the ceiling of care is unlikely to be for any other type of feeding at this stage of dementia.

If still eating and drinking well then normally something like a pneumonia will arise or a stroke that will not give much notice of end or life. It’s really very ambiguous to determine and as others here have said they have had relatives who were classed as end of life for 2 years.

My mother lives with me and she was referred to palliative care 3 years ago, they discharged her 2 years ago with an open access for me to contact them if things change. They have changed many times but each time, mum has bounced back. It’s really such a cruel disease especially at the end when it can be so prolonged.

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.

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!

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…

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 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.

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.

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.

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.

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.

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.

Ime they do. But it is led by relatives.

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.

'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.

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?