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

Pneumonia/sepsis for my mum. She stopped eating and drinking (I think she wanted to die)
We stopped treatment for the pneumonia, it wasn't responding to antibiotics

Should say my mum was 72, it was 5 years after early onset diagnosis

I am so sorry. Dementia is the most horrible thing. My father lasted a year. Once he stopped swallowing on his own I'd give him ensure in a syringe. That lasted about a week and a half.

My mums decline took about 7 years, from mild confusion to full on dementia. She had a heart complaint for which she had declined treatment in previous years. She was in a care home for about 6 months. We were asked what treatment we wished for as she neared the end. We just said oxygen if needed. She contacted pneumonia and passed away peacefully within about 24 hours. Please don't subject your frail elderly loved one to having a peg feed procedure I have seen this in elderly people who I have cared for and how it prolonged the agony for weeks/months. Losing the ability to swallow is one of nature's ways of saying its time to go x

My mil had a fall, broke her hip and suffered with pneumonia twice. This caused a decline in her (already late stage) mixed dementia and she lost the ability to eat. She ended up with her softened / puréed food in her lung after not being able to swallow properly and passed away soon after.

This was roughly 6 years after diagnosis with mixed dementia. She also had diabetes and ended up with epilepsy towards the end.

It’s a horrific, heartbreaking disease.

Both of my grandmas had dementia. One had Alzheimer’s and I’m not sure what type my other grandma had, but her memory gradually declined over decades. Both spent their final years in residential care before dying peacefully from UTIs.

My grandma died of covid, she almost died of flu the year before so we knew if she did catch anything then she was unlikely to survive as her immune system was severely compromised by that point.
She was fine the first week she tested positive (it was very early on in the pandemic so we had no idea what to expect) then the second week she just stopped eating, then couldn't get out of bed, then she just went to sleep and eventually her breathing stopped.

She was 84 & had been battling Alzheimer's for 10 years, by the time she died was still mobile but very unsteady on her feet & could only talk "gibberish".
It's absolutely the worst illness in the world and I'm so sorry you & your family are going through this.

Dad stopped eating,got thinner and just wasted away. He slept most of the last few days,occasionally muttering to himself, then gave a few gasps and was gone

According to the care home my mum is in, its because they stop being able to swallow.

Sadly op ,my mum is not far behind.
we also are in the 4 th year ,now in a nursing home ,on numerous meds to stop her being aggressive .following with interest because I’ve wondered the same

My DM was 'lucky' (if that's the right word around dementia). She had a couple of years where she began to drift and we'd be running around propping her up. For example, she'd forget to eat. We'd discover she still had food in the freezer from the last shop.

Luckily she lived in an assisted living sheltered housing scheme so we got Wiltshire Farm Foods and one of the carers or us would come in to do a sandwich and, later in the day, to microwave her dinner.

Then she got wise to the cooking and would cook dinner at 10am - as a diabetic that led to hypos. So we moved to Wiltshire Farm Foods equivalent of Meals on Wheels. The only food in the flat then was sandwich stuff and breakfast. Her meal would come at lunch time and they'd make sure she was eating before they left (can't recommend them enough). Then the carer would do the sandwiches for the evening meal if we weren't there for the day (can't thank them enough either).

Eventually, after a major fall she was assessed in hospital and moved to a respite, then to a care home.

She liked her care home - food was excellent and, apart from incontinent knickers, you never know there was a problem.

The care home worked wonders. They even took her off of using a Zimmer frame (which respite had put her on) to using a walking stick to keep her walking. She only used the knickers for occasional urine incontinence even though the respite home said she was double incontinent. The care home doubted the double incontinence diagnosis and spent a lot of time with her paying attention to the signs and 're-potty trained her'. Apart from the odd accident (dodgy tummy) she always used the toilet right up to the end even in hospital.

I can't praise them enough as we were told at her hospital assessment that the swallowing mechanism was going. The care home always had people sitting with the residents in the dining room and noticed that she would reach for toast at the end of the meal and manage to eat it. So they gradually added 'normal' food - by the end she was enjoying unbattered fish and chips, sausage and mash and a full Christmas dinner the Christmas before she died. They thought she was misdiagnosed with a dry throat in the hospital which made it hard to swallow!

She finally died in hospital having got a chest infection that wouldn't clear. Often the way with the elderly. So I suppose old age rather than dementia got her in the end at the age of 90.

Compared to many, as I said, she was lucky. My friend's MIL ended up dying in her 'care' home, weighing next to nothing and smearing poo on the walls . Ironically hers was an expensive care home. Shocking.

Oh, and mum was 8 years from diagnosis to death.

I’m also in the same boat, elderly mum has been in a nursing home over 5 years now. She doesn’t recognise any of us now and has been bed bound for 2 years or so. She makes noises but not meaningful nowadays. It’s really sad. She was always a big woman, size 18 to 20 for many years but is now only about 7 stone and only managed purée and liquid foods. How she is surviving I just don’t know. She got covid earlier this year but it barely affected her. I feel like she died a few years ago, I find myself talking of her in the past tense person isn’t my mum any more. I so wish we could help her to go peacefully.

My mum stopped eating and got weaker.
She ended up in bed the last 2 months of her life.
She got weaker and weaker and passed away peacefully with her 6 children at her bedside.

Being prepared can sometimes help to ensure care and compassion at the end of their life. The Alzheimer’s society has some information which may be useful
www.alzheimers.org.uk/get-support/help-dementia-care/end-life-care-dementia#content-start

This has been a hard read. My mum is in a care home - she is immobile and incontinent. Somedays she knows me, some days she doesn't. She talks about my dad a lot and doesn't seem to remember that he died 10 years ago so I don't remind her.

Mum mostly feeds herself, still drinks from a normal cup. Can't hold a conversation but is physically well on the drugs she takes for her blood pressure, arthritis, gout and ulcer. I can see she is losing weight and all I care about now is that she is comfortable.

I often wonder this also.
I have a close relation who is early 70’s. Had Alzheimer’s for around 7 years. Now in full time care home but is not that old really. Still physically ok.
But, doesn’t know who anyone is. Doubly incontenant, needs help with feeding and drinking. Walks around fine. Sits and stands all fine. Mind almost totally gone. Can’t really talk in a whole coherent sentence.
Not sure how long life goes on like this but it’s not much quality of life is it. Living for many years like this.

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.

This is the same as mine. It's an awful disease. Mine couldn't talk at the end, it's really hard to see your family member like that. I remember seeing her be fed water via a syringe.

Grandmother died of dementia. 96. In the end she lost the ability to swallow so when we would be trying to get her drinking or eating (even with thickening agents in drinks) she would aspirate (some of the food or drink would go into her lungs) and so she got repeated infections which took their toll. In the end the infection just accumulated damage and finished her, her lungs were too badly damaged. Three day coma and then passed.

Sympathies OP. I hated that final year where we looked after granny, there was nothing left of who she was.

My gran fell and broke her hip which meant she needed an operation and then she died of a hospital acquired infection. She’d had dementia for years and was pretty far gone mentally for a few years before she passed away. Her death still felt quite sudden when it came. Sorry that you are going through this op.

My mother had it for 5 years, and it was a great blessing when she died of a ruptured aortic aneurysm. She just went in her sleep. It's what you'd want for them - dementia is such a cruel disease.

My GM died of pneumonia. The doctor offered admission to hospital but my mum refused and she died peacefully at 89 in a care home.
She had five too many years really. Modern medicine has a lot to answer for sometimes.

Aspiration pneumonia is common people literally forget how to swallow and eat food , cachexia (Starvation and wasting) , UTI infections. Sometimes the heart just gives out but usually it's a very slow decline until the end. Horrible illness so sorry OP X

Dementia deaths are X-rated cruelty. Disgusting.

We were “lucky”, as awful as it sounds, in that my grandma died very quickly after being admitted to a care home for dementia. Probably less than 2 years from official diagnosis, although of course the signs were there before that. Her cause of death was pneumonia following an infection.

As a family we witnessed another family member living for a long time with advanced dementia, and the toll that took on immediate family. I feel for all of you living with that right now.