How do dementia patients eventually die?

[stirling]

Its on my mind a lot. DM is in her fourth year and at the stage where she's drenched in urine, cannot speak a single coherent sentence, cries, depressed, but her blood tests are fine.

I'm wondering if you have any experience to share.
Thank you

It was gradual for my Nan, lots of urine infections and chest infections. A rare condition that affected her skin and made her very unwell. And then eventually a tia, a stroke and then one day she complained of chest pains at lunch time and ended up having a fatal heart attack that night.

I will be putting in my living will no antibiotics to extend my life if I have advanced dementia, no artificial nutrition , build up drinks pain relief only. Hopefully assisted dying will be somewhat legal then in future..

Haven't read all the replies as now I don't usually read anything about dementia. I looked after both my parents who had dementia for 15 years before their deaths. Ultimately Alzheimers will close down the messages from the brain which keep vital organs functioning. Of course, in elderly people, there is often a secondary cause of death. But Alzheimers can be listed as cause of death on a death certificate.

I remember being quite angry when my poor MIL, decades into dementia and completely bed-bound, doubly incontinent, blind, deaf, unable to speak, weighing under 5 stone, contracted a kidney infection and the nursing home nearly bent over backwards to give her massive doses of antibiotics as soon as they could.

I knew they had a duty of care and had to have her treated and so my anger was complete misplaced, but we were years wishing and hoping she’d quietly slip away and it just seemed barbaric to basically keep her breathing when she wasn’t living.

She ultimately died of pneumonia. Obviously, she was treated for that but wasn’t able to beat it.

I’ve just visited DF in his new home for dementia sufferers. It’s so awful. He is actually very with it compared to the rest of the residents. I don’t think they can actually care for his needs when they are spoon feeding and toileting the others who range from non verbal to wandering the corridors ranting. He just sits in his room alone, no tv, no one to talk to. I think he’s scared to go out of his room because of the other residents.

One DGM was in a home with dementia for around a decade before she finally died of old age at 98. She didn’t even know her children at the end and just sat, unseeing & not noticing anything, for the last several months.

The other DGM was bed bound due to mobility issues but, mostly, recognising people and able to chat until she died age 96 after 4 years in her home.

I pray DF goes quickly. It’s such a cruel disease.

So in theory the brain damage would progress and stop the body functioning as it should however in practice the difficulties swallowing often causes an aspiration pneumonia, the incontinence often causes urinary sepsis or the lack of fluid intake causes an acute kidney injury etc. I think it is something that should be discussed when the loved one is relatively well so you aren't making such massive decisions at crucial, emotionally charged times. If something was to happen what would they want? These are often treatable diagnosis' but because they are elderly with multiple coorbidites they are critically unwell so involve going to hospital, catheters, multiple blood draws, hourly blood pressures etc etc. which if they then subsequently pass would be pretty distressing in the last few days.

My grandfather was in a great care home which was often staffed by agency staff overnight. They would find him unwell from a COPD exacerbation and call 999. He weighed about 35kg, multiple pressure sores, bed bound and was utterly miserable with his life. He would be shouting he didn't want to go to hospital but they sent him because he was so unwell. On the 5th time we discussed with the GP to keep him comfortable at home and they put palliative care in straight away and he was at his care home with staff who knew him, open visiting to family, all his pictures and home comforts.

Gradual decline over months. Stopped walking. Stopped being able to swallow properly. Food and drink intake declined over months. Obvious increase in frailty. Then just stopped eating and drinking. Died quickly from that point. Mum was young so died from dementia rather than with it. It’s like the pathways in the brain just keep closing off until even basic needs are forgotten.

My dad developed pica and had a habit of eating tissues and paper. He accidentally swallowed something and it went into his lung and he developed aspiration pneumonia, it was very fast at the end. He died within 12 hours. It was honestly the most merciful death we could have asked for, he would have hated being the way he was. He was just 66 when he died and had Alzheimer’s for 8 years.

My sisters FIL fell and broke his hip, he died a couple of weeks later from a stroke.

Mt DM was in a Care Home for nearly 10 years before she died age 99.
She gradually declined until she lost the ability to swallow. Not very pleasant at all.
Over the years I wondered why they insisted on her having the flu jab each year, etc (she couldnt speak for some years). This was when I first heard the term 'herd immunity' (that was the reason). It still seemed unpleasant to me, that they kept her alive all that time just to die in that way.

I was sat with my mum waiting for her to die and I said to the staff "this is ridiculous. We know she is dying, she can't be cured, and yet we have to wait rather than euthanasia?"
Every female in my family has had dementia and I'm terrified

Sorry to hear about your DM op. My gran has Alzheimer's at the moment and has only been diagnosed less than two years but in that time she has rapidly hit the downward spiral.

Shes refusing to eat and drink now more than two bites of food a day and is down to 6 and a half stone. She still has some coherent conversations but also hallucinates and has started sundowning. (A thing with dementia patients when they stop sleeping at night and get very anxious and wander round crying.) She doesn't always know where she is or who we are and its heartbreaking.

I personally think my dgran doesn't have long left but i too have been wondering what it is that will actually kill her.

My stepfather has skin cancer and prostrate cancer which spread to his lungs. His treatment was stopped when his vascular dementia became very bad and he went into a home. He hated it there which contributed to his death. He had a fall out of bed a couple of weeks before he died. His death was recorded as due to cancer.

My FIL fractured his hip about a month before he died. He deteriorated quite quickly and became bed bound about 10 days before his death. He also has vascular dementia.

If there's no physical disease, eventually people with dementia often have difficulty swallowing, stop eating and become progressively weaker and more immobile; in that state they are very prone to infections like pneumonia which finishes them off.That's why pneumonia used to be called "the old man's friend".

TBH I would kill myself if I was diagnosed - before it got really bad. Having seen 2 family members with dementia and the emotional, practical and financial stress it caused, I could not inflict that on my family.

Both of my Grandfathers had forms of alzheimers and like other PPs have said - people who have this awful disease will die from something else.
As horrible as it is, it's not a killer. Many infections that younger people can fight off will kill those who are older and more frail.

I'm in the same situation as you OP. My MIL was diagnosed with mixed dementia 3 years ago.
I am a carer and decided I would look after her in our home full time. I know I am the best person to look after her. (I love her like my own mum and she is a lovely woman. We have a great relationship). She doesn't go wandering, etc but can't cook for herself, can't wash, incontinent but very happy and cheerful.
Her short term memory is shocking but long term is good. Can remember the war, etc but can't remember what she did 10 minutes before.
The only down fall is, even when it is easy to look after her under one roof. (I used to look after her in her home) we can't leave her on her own for long so can't just go out for a morning/afternoon.
I miss the woman she was, as she was a scientist throughout her life. She was amazing with my 3 DC's and they had fun doing experiments and other activities to do with science. Such a horrible disease. No dignity and she would be mortified if she knew she was incontinent and having to wear pads. Just taking a day at a time.

I worked in a Nursing Home for 15 years and some residents with dementia died from chest infections, pneumonia.

My mum died in her sleep after 10/11 years of vascular dementia. When my dad rang me to let me know I just thought 'Thank God' - and I think he did too.

She had been unable to speak, move or do anything for herself for several years before she died, although she had been quite content.

I totally agree with PPs about Covid. We have become much to good at keeping people alive without the proper level of quality of life - Covid was a much needed rebalancing mechanism. Although I am relieved that my mum died before it hit us.

I have told DS that I do not wish to live my final years in the state my mum was, and I hope that sometime soon it will be possible for me to arrange that I will be put to sleep if need be when the time comes.

I think an advanced directive can be really helpful in this situation, written before you get dementia (e.g. us lot, not elderly parents already with dementia!) You can decline any treatment, antibiotics etc. in case of dementia. If i get my GP to witness mine, fingers crossed it will be respected.

mydecisions.org.uk/?utm_source=newhomepagebutton

It's hereditary in my family. My grandmother finally died of pneumonia. Eventually. She had no advanced directive or instructions. It went on and on and on. There's been enough detail on this thread buy let's just say it was about the worst it can get. If this country hasn't implemented some kind of humane euthanasia protocol if/when it happens to me, which is genetically likely, I'll be forced to take matters in my own hands sooner than I might have otherwise. Which is a shame, as I rather enjoy my life. But I fully believe the law will have changed by then.

I’m sorry your going through it OP. My Nan died with dementia, spent her last couple of years in a care home, vaguely knew who we were thankfully but she stopped eating and ended up in hospital where she died a couple of days later. She also had bowl cancer and she suffered badly with diverticulitis and had a stoma bag at the end.

We lost my MIL to it last year as well, 4 years in. She wasn’t eating much, she could physically swallow but she couldn’t figure out how to use the knife and fork anymore and FIL was an utter bastard who refused to get carers in for her and barely helped her eat, he would put a plate of food in front of her and walk away. She had what we think was a mild stroke, was in hospital for a week, came home and refused to eat. My SIL said to her, mum if you don’t eat you’ll die and she said I know so it was a conscious decision for her at the end and she lasted a week after coming out of hospital.

She didn’t really know who we were, she kicked my 3 year old who was playing on the floor, kept getting confused with their patterned rug trying to pick things up from it and used to wander round the house and hit out and be verbally aggressive if she got frustrated which is the total opposite of how she was before.

like other posters have said, it felt like she’d gone a long time before she actually did. We were relieved that she’d passed and we’re finally able to mourn loosing who she was not the person she became.

I’m so sorry. It’s so hard isn’t it💐…

My experience with my aunt aged 85 (and in perfect health apart from dementia) was pneumonia. She passed during the night just before Christmas and it was very peaceful. She said that the room was very bright and the staff went to get help, when they returned she was gone.
My aunt was very happy, she still knew us, had no idea where she was- but she loved her food and the company. It was a lovely nursing home.

Your mum should not be left in her own urine if that’s what is happening…

It’s a terrible disease.

Thank you so much everyone. I didn't expect to come home to so many touching replies. Im so sorry for all of your losses, it is indeed such a sad illness. I feel guilty wishing it wouldn't drag out for her.

These stories are so sad. With advances in medical care and sanitisation, people are living longer. It is almost as if the body 'outlives' the brain.

I too hope that one day the laws will change to allow people, whilst they are able to have a choice, for degenerative conditions like this.

It depends on the type of dementia. If Alzheimer’s, it basically eats away at the brain, leaving increasingly larger empty space. If the person doesn’t die due to illness, they end up unable to eat, drink and eventually breathe.

@AStar98it most certainly is a killer unless a different disease intervenes before its end.