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

I'm so sorry OP. I've been through this myself and it's hell for everyone. The answer is that many people with dementia die of the normal diseases and conditions of old age, either because they're untreatable or after a deliberate decision by doctors and loved ones not to treat.

If that doesn't happen then eventually dementia removes your ability to swallow, which often leads to death.

I’m sorry OP. Such a hard time. My gran died of pneumonia having battled dementia for 10 obvious years (possibly a few more with less signs).

sorry you are going through this. My nan died some years ago with dementia.
It depends whether there are other things going on really.

But my nan essentially wasted away. She was always a large woman but when she died she was terribly thin. She lost muscle because she was either in bed or a chair. She lost the ability to chew and swallow, the last months it was soup or fluids via IV. Her death itself was peaceful, she went in her sleep.

1. Kidney failure was listed as cause of death on my 98 year old Great Grandmothers death certificate. She had a slow burn of 10+ years with dementia/Alzheimer’s.

2. My other Great Grandma, 96, heart attack. She was fine until just after 94th birthday and she had a very scary, rapid decline over 6 months before it sort of halted and she stayed like that for another 18 months.

My dad just basically shut down very peaceful pain free death after years of hell with dementia

I’ve unfortunately been through it with both parents. In very general terms there’s usually a gradual decline of health which results in infection-usually chest or UTI, which becomes the primary cause of death. In my experiences both my parents had gentle well managed deaths, and I was fortunate enough to be able to be with them both.

as a side issue though why is your mum drenched in urine? My mum was unfortunately doubly incontinent from quite early on but it was well managed with advice and input from the local continence service and those who looked after her

Unfortunately it can be a number of years. In our case 6. And basically once DD stopped eating it still took what seemed like for ever. (I want to say 4 months but not sure). Eventually he just wasted away. And his body just shut down. And then he died. And it was a relief for every one. You havey sympathy. It's awful.

Dad had dementia and spent his last years in a nursing home , incontinent. , in a bed or wheel chair and being spoon fed mush
We were told that dementia patients die either from a fall , an infection or starvation , if they lose the swallow reflex and aren’t peg fed
Dad died from an infection and it was a relief to us all ,as he would have hated living like that

My father had alzheimers for nine years before he died (actually probably a little longer since initially put down to just forgetfulness.) He reached the stage of double incontinence, immobility and very little recognition of anyone (except my mother) , about 18mnths before he died, over that period he gradually became very incoherent and his speech very hesitant. Up until then he had been very confused but still able to for instance attend my neice's wedding, go to a day centre, potter about etc.
In those last 18mnths/2 years he had quite a few 'falls' (sort of sank to the floor and couldn't get up), several bad urine infections, spent a lot of time in bed sleeping,and was hospitalized several time. He then had a mild stroke, went into hospital gradually stopped eating and communicating at all over 3 weeks, then died of pneumonia ( we had a non treatment/DNR agreement in place). His death was very peaceful in the end, and heartbroken though I was to lose him, he was so distressed at his own condition, I was glad his suffering was over.

I'm so sorry to hear you are going through similar with your mum - dementia is an awful awful disease. I don't know if my experience is of any help - I'm sure there is a lot of variation, and some people obviously decline more rapidly than others. I think the best people to speak to are of course her doctors and carers and ask them to be honest with you - they will have a good idea of the stages of decline that mean the end is approaching. I'm so sorry

My dad and uncle both had mixed dementia. They died of chest infection.
In my dads care home - for dementia- there were eating and drinking issues as dementia progressed for many residents. Not swallowing effectively, not eating well ( not because he wasn't given good food but just because he didn't feel hunger in the same way I think. ) Pre dementia he was 15 stone. By the time he needed 24 hour care he was 9 stone and falling.

My Grandmother died of pneumonia at 102 and had obvious signs of dementia from her early 70’s.

When we visited and found piles of plates in the cupboard with old food on them, we knew there was a problem. We moved her into a warden controlled flat at that stage and 10 years later she went into a home.

I honestly believe she only lasted as long as she did because of the care the home gave her, but I desperately wish she hadn’t had to experience the last 15 - 20 years of her life.

She wasn’t happy and used to cry when I visited. It broke my heart !!

OP I hope your mother suffers another disease before she gets to the very end of dementia/alzheimers.

I'm sorry to have to say my grandma lasted for 10 years from the point where she couldn't be managed 24/7 at home. The first couple of years she went to the day centre for 2/3 days a week. She then went to a MH unit for dementia sufferers on a respite basis. 2 weeks there and 5 at home followed by 2 weeks there and three at home.

When grandad and mother could cope no longer she went to a specialist mh/dementia unit. She spent 5 years there. At the beginning she could goto the day room and drink a cup of tea/feed herself. Within a year or so she stayed in her room and needed help eating, dressing, toileting. By then she knew not who anyone was. I recall her telling grandad he was not her husband because her husband was a handsome young man with dark hair.

The last few years mother/grandad fed her liquidised food, drinks from a sippy cup. Mother insisted on doing her washing and her hair to keep it nice. She was doubly incontinent.In the last year she had some tia's and stayed in bed. The family bought her a special vibrating bed to prevent bed sores. When she died, she was 4.5 stone.

If I am honest I think it would have been better all round if mother and grandad had not gone daily to attend to her every need. She would have gone more quickly and they wouldn't have burnt themselves out. Grandad died 15 months later.

It is the most wicked disease when something else doesn't take them away before the end. It is why I believe in living wills.

I am deeply sorry for you op but you can only do what you can do for your poor mother. The only grace is that she won't know.

My only question is why is your mother drenched in urine. Is she not being provided with Tena pants.

My DM died 4 yrs after being diagnosed with Alzheimer's.Cause of death on the death certificate was metastatic lung cancer,primary source unknown.

Regarding the swallowing. Grandma was diagnosed with something called stricture of the gullet at the beginning of dementia. This meant she had a procedure under sedation about every 18 months to help with swallowing. I don't know if this prolonged things for her.

The first symptoms became noticeable when she was about 70 - forgetfulness, personality change, accusations of being locked up, having her things stolen, etc. She was 85 when she died.

It's been going on here now since 2012!

Now bed ridden and unable to speak.. still eating 🤷🏼‍♀️

Usually something else, but some simply refuse to eat.

My advice is to talk to the care team to ensure a dnr is in place. Beyond that you can decide not to take "extraordinary measures" like fortified drinks when they don't want to eat.

You can ask for medications not to be given eg for infections if in final stages.

Is very upsetting for all involved. Covid took dgm but a blessing as far as we were concerned.

These experiences are harrowing to read , my heart goes out to you all living through them. So cruel.

@RosesAndHellebores
This
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If I am honest I think it would have been better all round if mother and grandad had not gone daily to attend to her every need. She would have gone more quickly and they wouldn't have burnt themselves out."

My DM is receiving the best of care from me and my siblings and carers. We ensure she eats drinks and takes her many medications .
I often wish we could leave her to her own devices as I feel we're artificially keeping her going.
She doesn't have much quality of life and just sits or sleeps , I know she will need to go into a nursing home soon and I'd much rather she slipped away.
I do feel conflicted though having these thoughts.

My uncle with severe dementia got pneumonia for the third or fourth time and when the staff of the very nice, swish care home asked his wife if she wanted it treated she said no.

Hopefully, one day by elective Euthanasia as with a much loved pet if agreed to while 'Compos mentis''
None of our family want to end up dementing as you describe and all of us want euthanasia if push comes to shove.

When the ''Baby Boomers'' hit dementia age, there simply won't be the carers about to care for people who are unable to feed themselves or change themselves or care for basic hygiene.

It's awful to keep people alive with no dignity.
Who would wish that for themselves?

Not many.

My grandad died weighing under 6 stone and wearing nappies, no clue who anyone was. He’d have been utterly horrified to see what became of this big, strong, proud man. The sooner euthanasia is legal, the better; it is true we wouldn’t let an animal suffer like that.

It is hard to predict but old age and related illnesses.
End stage is a term used for the latter phase and typically includes a reluctance to eat/drink.
However a frank discussion with GP would help you.
You would probably benefit from contacting Alzheimer's society for illness plus ask GP or community mental health team for referral to an Admiral Nurse.

It's a terrible thing to say, but I think Covid was actually a blessing for many of us. It's the unspeakable truth, only shared with those who have had the same experience.

Spot on.
It's absolutely inhumane.

Care home owners grow rich on the funds of sold houses, while staff are worked to the bone on minimum wage.

I have witnessed beloved animals with terminal illness or conditions be euthanised, and it looks peaceful and humane.
But I expect to do this for humans will be a legal nightmare.

One wouldn't want someone euthanised while they still have quality of life, and certainly one would have to be wary of greedy relatives if there is property or valuable objects owned by the person.

I nursed my father at a hospice just last year. He had dementia, then caught Covid. the staff at the hospice centre told us that eventually the brain function closes down so that even breathing stops. If nothing else happens, then yes, they lose bodily functions such as toilet and eating etc, then they will often keep missing a breath, then they go to sleep and don't wake up. My mother was in a bed next to my dad at the hospice, and I was in a room down the hallway. We were both sitting with him, chatting, then went to bed. Less than an hour later, a nurse woke us up as he'd simply stopped breathing. As someone else said, Covid was a blessing in disguise. Until he got Covid, he was able to walk around at home, although he didn't eat much, and he knew who his closest family and friends were. Getting Covid meant that the part of his life where he was stuck in a bed and not very aware was only a few weeks. It would have been terrible to see that extended over months.