What stage of Dementia is confabulation?

[TomatoPotato]

DM is is fantasising. Her latest one is that her best friend (in her 80s) lives in the care home with her and has remarried one of the residents. Who is also married to one of the senior carers. I asked her how the carer felt about that and she supposed the carer would have to “share” him. No point even discussing bigamy laws, this is all fabrication. Apparently all our family “live upstairs”.

DM still recognises people and has quite a good short term memory, but it’s the fabrication of life that is taking over her mind. I read that this behaviour is called “confabulation” and is typical in stage 4/5 of dementia.

Has anyone else had any experience of this and did your DP ever improve or is this really the start of the end?

TIA

I didn't know that was a symptom of dementia but I would check that she doesn't have a UTI as it is a common symptom of that. Don't automatically attribute every change in behaviour to dementia - there may be a different cause, which can be treated.

Thanks. I’ll get in the case about a UTI. The care home staff are very good.

I’m my experience very early. MIL lived another 10 years beyond this stage, eventually becoming bedbound, unable to speak, not recognising anyone, needing to have everything done for her (feeding, changing etc). She eventually passed away at 76 after being diagnosed at 65 😢

This was actually how my mum's dementia started. I never heard it called this term though. I thought she was getting a bit forgetful for a couple of years but put it down to old age as she was in her very late 80s/early 90s. But then she started to see a man with a black hat walking down her stairs and this was quickly followed by a woman with a little girl and a young man who were all living in her spare room, and a group of teenagers who used to play unkind tricks on her and refuse to take her out with them. The delusions were so real to her, and just got more and more frequent and more intense over a period of two or three years. Like your mother, my mum still had a fairly good short term memory and never stopped recognising me or my daughter. But as things progressed, the delusions were almost constant, and included long dead family members, particularly her own mother. The good thing was that they hardly ever scared her, but it was difficult to get support from social care for a long time because she sounded so lucid when she talked to social workers in assessments and they accepted what she was telling them about family members having been killed in terrible tragedies. The turning point came when she started talking to her mother, who she could see sitting next to the social worker, during an assessment. I was always told not to contradict her when she talked about the imaginary people or what they had done, or to tell her that they weren't real, but it was so so hard.

I understand just how distressing this must be for you, OP. But my mum still had a reasonable quality of life for some of this time and I didn't feel that I'd lost her completely to the dementia for a couple of years after the onset of the severe delusions. I wish you and your mum well, and take any support you can get.

I should add that my mum did have several UTIs during this time and things sometimes improved with antibiotics but only marginally so.

Thanks @Growlybear83 -yes, we have had difficulties with social workers because of exactly this.

I was trying hard not to laugh about her friend’s marriage as it was so ridiculous but some of the other stuff she comes out with is deranged and distressing, especially when it’s about the children in the family ☹️

My dad was similar as his dementia progressed. He never went into a care home but was getting to that stage just before his death (from an unrelated thing). He was absolutely convinced that there were bad people in the house, he could see them, hear them, he knew they were there. He would go from room to room looking for the bad people, and got very upset/angry if we contradicted him about the bad people. We sold his car as he was no longer able to drive, that was bad people who had stolen it. Having someone in the house to service the boiler distressed him further, clearly a bad man who was going to steal things/hurt him.

All you can really do is distract, don't argue with them as that upsets matters further. Your mum sounds like she has good care.

One of the funniest incidents with my mum was when she was hospitalised for a couple of nights just before the first lockdown after a very severe nosebleed. When I went to collect her, she complained very loudly and for the entire half hour it took me to get her ready to leave that she hadn't slept a wink either night because all the nurses and doctors had had an orgy on the ward both nights. She pointed out each nurse who had been involved, and who they had been cavorting with, including the patients, and described their activities in quite some detail. 😆

DF is in a care home with Alzheimer's. He fantasizes a lot. When I visit he often has an imagined tale of something he's done (e.g. driven over to help DM with something at her house - DM is dead, he has no car). His short term memory isn't great, but he still knows who we are and doesn't seem to be anywhere near end stage yet.

@Growlybear83 That made me laugh! I suppose the medics are used to it.

After a short stay with BiL and SiL (to give me a break) FiL told us in all seriousness that his housekeeper was a dirty trollop who was having men in, and sleeping with them under his roof!

We eventually worked it out - the ‘housekeeper’ was SiL, who did most of the cooking and housework, and because he was in the habit of wandering around at night, going into bedrooms to see who was sleeping in ‘his’ house, he’d seen ‘housekeeper’ sis in law in bed with BiL.

No point arguing, he’d left them by then, so we just went along with it.

My DM went through a long phase of insisting that her sister (still alive) had ‘stolen’ their mother’s house. I knew what had triggered it, but this went on for ages. Even a signed and sealed declaration by the Lord Chancellor wouldn’t have convinced her - he’d have been ‘in league with’ my aunt, same as I was when I tried to convince her that it wasn’t true.

I soon stopped trying. Instead I’d say e.g ‘Dear me, that’s terrible, I had no idea! I’ll get on to the police/a solicitor first thing tomorrow.’ Her short term memory was practically zero by then so I could repeat ad lib.

I can’t remember what stage either of them was at - sorry - but fairly far gone, especially DM. They’re both long gone now.

MIL is in a dementia care home with vascular dementia. She's been there since March when she was causing chaos at the assisted living place she was living in with FIL who also has dementia. She loudly announced in the bistro thee that FIL wanted to cut her head off. We moved her in for respite from FIL and then she started attacking people and got increasingly aggressive so had a DOLS put on her and moved into the care home she's in now.

She remembers everyone but sees things/people that aren't there. Tries to pick at things in the air in front of her. Tries to sit in chairs that aren't there. She thought FIL was having an affair. Is convinced she's going to get out and get a flat in her childhood town with her friend. No clue what stage this is tbh. She has short periods of lucidity but most of the time is delustional.

DMIL had Vascular and we were told on diagnosis they usually last 5 years. I'd say looking back that confabulation started after about two years.

Forgot to add that DMIL did last just over 5 years.

For my DM it was about two years in, and she died 18 months later. She had other medical issues, but once the confabulation started she deteriorated quite quickly. In the end she'd lost most of her language.

Thank you for your recent replies. I remember my DF hallucinating about his childhood shortly before he died (of cancer) so I did wonder.

My aunt has been at this stage for ages. It was one of her first symptoms that made me get her checked. She's 87 now, 4 years post diagnosis and apart from her brain is as fit as an ox, which somehow makes it more heartbreaking.

The stories she has told are unreal. All the men she is having sex with. The people who have stolen her house, the people who eat all her food. The uncle that is conning her out of eberything.

She knows who I am by name but I don't think she knows I'm her niece iykwim.

Thankfully my mum doesn't say anything really wild but she keeps telling me about holidays she's never been on that seem to be triggered by TV programmes. Like her antarctic cruise (Blue Planet) and her cruise to the Congo ( programme about gorillas). She has a tendency to tell me anyplace I mention she's been to on a cruise and it was lovely. Sometimes I try work out if I can get somewhere like Stoke or Wolverhampton into the conversation because apparently yhe cruise to Milton Keynes was lovely.

My mother in laws now in a nursing home, her paranoia and delusions can be really bad but then she has periods where she seems totally fine so the external doctor and social workers have said she still has capacity as when she speaks to them she was okay.

They want to come see her when she's telling us all the staff are robots or that they are trying to kill her or they have a room for racists/gay people that they send one of the carers too. There's been so many delusions and she gets quite distressed at times. There's also sundowning where it gets worse in the evenings which she definitely suffers with. She still recognises us all and if we go in she'll start telling us all this stuff and if we distract her and start asking her about things from her past she can then talk about those and seems okay.

Yes check UTI, MIL with dementia had UTIs every so often and noticeably improved when treated.

My Mum was convinced she was still living in London ,and the tube was nearby!In reality we were by the sea on SC. Luckily one of her carers came from the same area of London, and would speak to her about it.Its best to go on board with it ,if you correct her you may upset and confuse her more .Its a hard illness, and as a GP said to me probably harder on family than sufferer.Take each day as it comes .accept all help and try to keep as many interests of your own. Take Care x

@countrygirl99 , that rang a bell! Any mention of anywhere from Albania to Zimbabwe on TV, my DM had been there. I soon stopped saying, ‘I don’t think so!’ Instead I’d say, ‘Oh yes, was it nice?’
The answer was invariably, ‘I can’t remember.’ 😂

My Auntie came out with some humdingers over a couple of years… when she was still at home there was a little Chinese lady who used to climb out of her clock in the evenings.. in hospital she was convinced she was actually in a soap opera about a hospital… when I visited her one time with DH she said it was a shame I’d got divorced and married someone else in South Africa as she liked my DH (he was sat right next to me).

She died about two years later, but was bed bound, very frail and actually had a stomach ulcer that bled out.

Can be alcohol.

DFs been confabulating for 30 years.

Convincing because they’re being honest (but not truthful).

She is teetotal so not alcohol related in this instance.