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?

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.

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.

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

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.

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

@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.

Not if you gave a ceiling of care in place.

We have a DNR in place. The only thing my dad can do is eat and drink with support. It’s taking up to an hour to feed him. He’s actually in a residential care home but no one has mentioned about him having to move to a nursing home, which is something I’d not want for him.

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.

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.

@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.