When is someone with advanced dementia considered end of life?

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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