'False memories' with dementia- any experience?

[formalwellies]

My DM is currently awaiting a full dementia assessment/diagnosis but other causes of her symptoms have been ruled out. Despite problems with remembering words, her cognitive changes don't seem to have impaired her day to day memory in what I'd consider a 'typical' dementia way- she doesn't forget where she put things, who people are, what her plans are, when to take her medication etc. She struggles more with processing skills- so she can remember how to do something simple (like use the microwave to warm a ready meal) and can have notes to follow in case she forgets but can't actually put these in to practice. She also suffers with delusions/paranoia- imagining that people are in her house, people want to harm her, her money will be stolen etc- and remembers details of these as if they were real. More recently she seems to have started to have what I can only really describe as 'false memories'. They are sometimes just random and inconsequential (eg claim that I gave her something that actually she bought for herself years ago) but increasingly they seem to be stories (that she clearly completely believes) she's using as 'evidence' for why her paranoia is perfectly rational. When other people can't remember these 'events' she claims that she didn't tell people what was happening, or she did tell them but they obviously weren't interested enough to remember. The stories seem very detailed but are completely bizarre and the sort of thing that if it really had happened she would definitely have discussed with family and would have been remembered. Unfortunately, she does not forget these 'stories' and in her mind I think they are as real as if they had happened.

I am keeping a log of these things and will show it to the people who assess her but I wondered if anyone else has experienced this as part of dementia, or if perhaps it's some other mental health issue.

If so, does anyone have any advice on how to handle it with mum? For things that are not causing any problems (eg thinking I gave her a gift etc) the obvious approach is to just agree but where the 'memory' it is clearly causing her distress what is the best approach?

Very sorry to hear all this, OP. This is a very difficult landscape.
Dementia is not an illness itself - it's a collection of symptoms of many different illnesses of which Alzheimer's disease is the most common. Different dementing illnesses have different symptoms and courses.

I'm not a doctor, but your mum's condition sounds like it might be Lewy Body dementia, which has a prominent emotional component.

I would very strongly suggest talking to Admiral Nurses. They can advise and guide you.

Sending good wishes.

Admiral Nurse Dementia Helpline: 0800 888 6678.

@ShrubRose Thank you. I've had a quick google of that and lots of the symptoms of LBD do seem like mum. It's interesting to note that there seem to be some physical symptoms too that mum has, but I'd not connected to her cognitive issues. My sibling is adamant that mum can't have dementia because her memory is fine so I need to persuade them to consider it too (not easy since they really want to believe that mum's just having a few 'episodes' and will be fine soon.

My das had mixed dementia but didn't loose his memory. He was mainly affected by the loss of motor skills and had a skewed version of reality that sounded really plausible but wasn't the truth.

The main thing is to make sure people that deal with her know the situation.

I asked the social worked at the hospital not to speak to him alone. She ignored me and told me he had capacity. He'd told her his version of the truth that my mum was fully capable of looking after him. My mum had a starlit and had her own issues b

This was one of the very earliest signs with my DM, this and not knowing where she'd put a few things but other than that her memory seemed ok. DM was clearly making up very tall stories. I'm kicking myself now for not realising sooner. I thought she was being difficult and had become a bit mean and toxic.

The word that springs to mind is confabulation. Fronto-temporal dementia also includes this. She really believes what she is saying and feels entirely rational, but it doesn’t mean it actually happened.

My relative was similar. From about late 80’s they would forget if they’d eaten/taken meds etc but still had a phenomenal memory for wedding dates, birthdays, people etc.
We live fairly isolated geographically, so when people did turn up to visit they would look at me like I was lying when I said they were losing their marbles.
For my relative though, the made up stories were nearly always happy encounters. A hospital appointment, and guess who they’d seen in the waiting room? A niece that emigrated to Australia in the 1980’s was there! What a coincidence.
A long dead neighbour that came and took her to the pub for lunch. Flowers delivered from an old friend, but no sign of them. Things like that. Specious - plausible but wrong stories.
She lived till nearly 100 and never got any worse. It was hard to convince anyone she wasn’t quite right, and unless you knew her well and saw her regularly I can understand how they couldn’t see it.
She was an unrelenting happy and cheerful, see the best in everything and everyone type, so perhaps it just depends on personality how it presents itself.

You have to go with it. On insta, I found a speech language pathologist who specialised in dementia communication. She is a great resource. Her name is Adria Thomson and her insta account is '@belightcare' She really helped me reframe how I dealt with communication and understanding what my parent was going through. It made a really difficult and distressing situation much easier for both of us.

My DM certainly did! At one point (among other things) she got it into her head that an aunt (her sister) had ‘stolen’ their mother’s house.

I’m pretty sure what kicked it off - we’d visited the younger aunt on her 80th, and DM had noticed some things that had come - entirely legitimately - from their childhood home.
At first I did try facts - the home had been sold long ago, all the siblings inc. DM had received their share - it was useless. It was like an angry bee, constantly buzzing in her head.

It took a while to dawn on me that even a signed and sealed statement from the Lord Chancellor wouldn’t have convinced her - I’d only have been ‘in league with’ my aunt - she’d already accused me of that several times.

So eventually, when she started on about it yet again, 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.’

Since her short term memory was practically zero by then, I could repeat as necessary, and it always satisfied her for the moment.

On a lighter note, every time any country from Azerbaijan to Zimbabwe was mentioned on TV, my DM would say she’d been there.

At first I’d say, ‘Er, I don’t think so…’ but soon changed it to, ‘Oh, really? Was it nice?’
The answer was invariably ‘I can’t remember.’ 😂

So basically, you just have to go along with it, no matter how fantastic - arguing is useless.

This is very typical of some forms of dementia especially Alzheimers.

Imagine you lose your keys and can't find them. It can't be your fault as you aren't the sort of person to lose your keys. So what could it be? Well most likely someone has broken into your house and stolen them.

Now your child is telling you that you got that wrong. Well what do they know, they are only a baby! Hmm, maybe they are in on the theft and you can't trust them

This is basically how elaborate stories and paranoia works in dementia. Just agree and move on.

Confabulation is a symptom of dementia, I used to do care work at a dementia care home and it was a common symptom. I'm going through it with my dad too. He's not been diagnosed with dementia officially although he doesn't have capacity and is detained at a dementia home, but his confabulation was one of the main symptoms. It's something the brain does to explain the memory gaps, it's automatic they're not noticing there's a gap and making up a story, their brain is doing it as part of the dementia. My dad was obsessed with things going missing from his fridge and turning up in his bin, obviously he had simply been eating them but he couldn't remember the days passing so his mind made up stories that he saw a burglar in the house or the neighbour and they were eating his food or sneaking rubbish into his bins. I found it one of the scariest symptoms because we couldn't discuss it with him as he didn't think he had any memory loss because his confabulations filled in the gaps and felt true to him.

My immediate thought was Lewy Body. My parents had Alzheimer's and Mixed Dementia but a friend's mum had Lewy Body.

(She responded brilliantly to medication by the way, and had a good quality of life. Her diagnosis was really helpful for them.)

I don’t have much experience with this but several years ago one of my relatives was a PA for a man with dementia and this chap disclosed to my relative that he (the client) had murdered someone. He was quite specific with some of the details and so my relative had to report it.

The police did look into it but the conclusion by them and the social worker was that he’d internalised parts of a film he’d seen and effectively put himself into the story. I don’t know what kind of dementia the poor man had.

Worst incident with my DM was started by a dream she had, after some TV prog., IIRC who Do You Think You Are, where someone’s ancestor had been buried in an unmarked grave.

Well! I was staying over, and she was up in the night, terribly distressed, thinking that she and her cleaning lady had taken my father’s dead body many miles away in the cleaning lady’s car - and just dumped it. (My father had died many years previously.)

I had been there when my father died, I’d been there at his funeral (cremation) - telling her all this was useless - she was convinced, and terribly distressed. I even phoned the cleaning lady (an absolute treasure) and got her to reassure Dm that she’d never taken her anywhere in her car, ever.

That didn’t work, either!

It took a few days for this obsession/distress to wear off, but even after that she started telling me that some random stranger had knocked on the door and asked her to get rid of a dead body!!

As I realised only later, what I should have done after the initial distressing dream, was to go along with it, tell her I knew what had happened, but it was Ok, not to worry, he’d been properly buried now.

Thanks everyone for sharing your experiences. Mum's 'stories' aren't always to explain memory gaps (or at least not obviously so) but definitely to explain things she believes are true but can't quite explain. Unfortunately many of her 'stories' are quite unpleasant and she doesn't seem to forget them, it's like they become part of her longer term memory. For example she has been having auditory hallucinations and believes that there are people in the house that mean to hurt her at night. We've demonstrated to her that there is no one there, the house is very secure etc and reassured her that she's safe. In the daytime she agrees but says that it is perfectly rational for her to be worried about intruders because in the recent past people really have broken in/hidden in her house and have threatened her. She has a few very elaborate examples, with one involving police sending her to stay with a relative whilst they watched, arrested and imprisoned the intruder (obviously said relative has no knowledge of this). I wonder if it's a similar reason to the experiences people have mentioned about explaining memory lapses- she can't understand why she would suddenly be frightened in her own home, or hearing voices, so her brain has created a reason.
It's hard to know how to react to the stories- if I nod along will it reinforce the 'memory' because she'll think I remember too? If she forgot the stories quickly that wouldn't be a problem but she seems to remember them and build on them. Obviously for more pleasant stories that's not a problem but hers are often distressing.
@Justmadesourkraut I'm really pleased to hear that medication helped your friend's mum. I'm really hoping after the assessment we'll be able to find something that can help calm some of mum's distress.