Is this normal for later stages of Alzheimer’s

[SinisterBumFacedCat]

Mum screams a lot. She will scream and wail and shake her arms violently. Then stop and almost fall asleep. Then wake up, focus on me for a moment, then start hyperventilating and talking but not making sense before starting to scream again. This happens constantly and can be twice in a minute to every 5 minutes. She’s had paracetamol and her medication, she’s in a nursing home and mental health nurse is visiting her. She also seems to be having hallucinations. They want to give her Aricept to slow down the progression of her Alzheimer’s. I’m worried that this will just prolong whatever stage she is in, which is clearly torturous for her. She is 68 and the first signs of dementia were in 2019, she’s young but I can’t bear the thought of this going on for another 10 years. Is this behaviour normal for later stages of dementia, has anyone else experienced it with their loved ones?

Dementia can present in a really wide variety of ways but you haven't said anything that would make me think it's not dementia.

I would see if your mum's doctor or the mental health nurse (if they are a prescriber) can suggest a medicine that might improve her quality of life. What I mean by that I suppose is a medicine that reduces the shaking/screaming and makes your mum calmer. You might need to try different medicines before you find something that works.

My MIL spent part of her dementia journey shaking and saying "I'm terrified" which was awful. Different meds seemed to help and now she is calm generally and sleeps a lot. I don't think that is all the result of medication but also the progression of the disease. I don't think she is suffering now but she was when she was terrified so her quality of life is better.

I would tell the doctors that you would like to advocate more for your mum's quality of life than prolonging her life and ask their opinion. Do you have power of attorney for health?

I'm sorry for what you and your mum are going through.

Sorry I wasn’t clear in my OP, Mum was diagnosed with Alzheimer’s in the early stages. What medications helped your Mum through this phase, and how long did it last before she settled? Thanks 💐

I'll ask my FIL what medicine MIL changed to when I see him this week (not really something I can text as I'll need to explain). x

Thank you 🙏 no hurry

There isn't a chance she could have lewy bodies dementia? Just mentioning as my mum's friend with dementia was very distressed with hallucinations and anxiety and it turned out she had lewy bodies.

My granddad had frontal lobe dementia and I'm afraid this lasted a long time.

It may be worth checking to see if she meets the requirements for CHC if she e.g. becomes violent when she's distressed.

I don't know whether or not the drugs you're describing could prolong this phase. For my grandad it seemed to be caused by a lack of understanding of who other people were or where he was and therefore why people were doing things to him (feeding, washing etc) so the distress didn't really go away.

Hi,
I spoke to my father in law and my MIL is prescribed Pregabalin. For her it seemed to reduce her distress quite markedly within weeks/months of switching to it. I think it did make her more sleepy but her quality of life is better with less fear/distress.

I’m not sure what her previous drugs were but my FIL said different doctors at the hospital/GP had different opinions of what she should or shouldn’t take.

I hope things improve for your mum and for you x

Thank you so much for getting back to me. I was prescribed Pregabalin for long term nerve pain years ago, it didn’t help me, but I can see it could be prescribed for other things, especially as it slows down reactions (so good for nerve pain). I will ask the mental health team. One worry I do have is that she is experiencing pain but can’t articulate it. xx

My mum was prescribed an anti anxiety medication (sorry I can’t remember the name), it did help to calm her down. She was also v young when diagnosed with a variant of frontotemporal dementia. She didn’t scream or have hallucinations (i was also wondering like a PP about Lewy bodies for your mum) but she was v unsettled.
Fortunately (or unfortunately depending on how you look at it), this stage didn’t last long as the progression of the disease was so relentless.

My husband (65) is very distressed at times. He has Alzheimers and Vascular Dementia. We found Seroquel/ Quetiapine helpful and he gets Alprazolam PRN if he is particularly agitated and upset. He is in a Nursing Home now. He now longer takes Aricept as there is no longer any benefit. He was tried on Gabapentin and Risperidone and they did not have any positive effects.

Ask MH team about anti-psychotic meds. If she is hallucinating, something like risperidone could help.

Investigating possible untreated pain is a good idea. UTIs, skin irritation/breakdown (especially if she’s incontinent), arthritis, muscle tightness from staying too long in one position, dental pain are all possibilities.

As others have mentioned dementia with Lewy Bodies can cause hallucinations. As can Parkinson’s Dementia.

My mum died 2 weeks ago but she developed a strange screeching cry in the last few weeks of her life, not only when she was awake but when she was asleep as well. It seemed to be once she was losing the ability to articulate her thoughts and we assumed it was frustration causing it.

I'm so sorry OP. That's bloody hard for both her and you. I hope a way can be found to help her.