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Is this really only mild cognitive impairment?

12 replies

Worriedwife70 · 22/01/2025 06:12

DH66 had an incident a year ago where he briefly forgot how to get home from the shops (which was a regular short walk). We reported to GP and a year of thorough investigation followed - stroke unit, cardiology, mental health/dementia. He got the all clear, no signs of stroke,TIA, brain issues. Minor age related heart issues only. The diagnosis was mild cognitive impairment.

He was never brilliant at these skills, but now has very little short term memory, is incapable of organising (finances, meds, appointments), has constant struggle with everyday IT.

He used to be always on the go, a busy and happy man, but now does nothing apart from visit a local cafe every day and chat with regulars there. He doesn’t want to bother with old friends.

He used to be charismatic and loved social interaction (actually a bit too much of a people pleaser in my opinion). He’s still easily flattered and would be a scammer’s dream, but now he easily falls out with people, arguing over nothing in everyday situations. He has more than once accused me of trying to poison him and says he’s followed me and seen me canoodling with another man. He gives vivid and detailed descriptions of these scenarios, which have never happened. I feel he views me as the enemy at times.

He loved his work, spent more time on worldwide business trips than at home, so existed in a complete bubble. He surrounds himself with reminders of that life, also hoards bookcases full of old work files he’ll never use again.

The mental health consultant has assured me there is no dementia and simply dismissed my other concerns; I felt like I was making a fuss.

Where do I go from here?

OP posts:
UnhappyAndYouKnowIt · 22/01/2025 06:35

Unfortunately you have to keep monitoring it and go back if it gets worse. His assessments will have been able to say he doesn't meet the threshold for dementia at that time, but there is still a risk of it developing. Good exercise, meeting up with friends for conversation, and a healthy diet are a good idea. And monitoring his hearing as well. That can have a big impact on cognition.

JanuarySnowyDays · 22/01/2025 07:14

What a tough situation for you. Hope you’re holding up ok.

When you say mental health consultant do you mean psychiatrist? This does sound like some significant personality changes with delusions from what you describe. I think you need to ask for a second opinion.

it was way back in the 80s which isn’t known for being good with mental health but it took my Dad years to get my Mum’s mental health issues properly diagnosed. He was told nothing wrong and marital issue for years. He went private in the end (£1000 a week in the priory!)

I would try for second opinion and if that gets you nowhere, can you afford a private consultation with a consultant?

All the best.

Worriedwife70 · 22/01/2025 18:14

.

OP posts:
Msmoonpie · 22/01/2025 18:38

I’m sorry this must be so hard.

We were told a relative only had “short term memory loss” not dementia after tests. I can only assume they aren’t allowed to say what they think it is only what tests currently show.

It was clear at the time and afterwards that it was not “short term memory loss” Relative couldn’t recognise her own house after a hospital stay.

They're now in a care home - no diagnosis was ever given but the carers agree it’s dementia.

It was a piss take tbh - they were talking out of their arse imo.

If I were you I would be going back asap - have the dementia tests re done. With someone as you describe there is clearly something further going on (as it was for us) annf if it is “mental health” related they need to give a diagnosis. You both need a diagnosis to plan for the future.

Personally what you describe screams dementia to me - especially the delusions.

Jellycats4life · 22/01/2025 18:41

My gut feeling is that people must slip through the net quite often. A relative of mine has been diagnosed with mild cognitive impairment but I think, personally, that it is dementia.

Msmoonpie · 22/01/2025 18:43

Jellycats4life · 22/01/2025 18:41

My gut feeling is that people must slip through the net quite often. A relative of mine has been diagnosed with mild cognitive impairment but I think, personally, that it is dementia.

We cross posted - had a similar experience.
How exactly is not remembering your own home “short term memory loss”. Idiots.

Rattysparklebum · 22/01/2025 18:55

I Recognise some of these behaviours in my DF, seemed ‘ok’ most of the time but started to withdraw from company as he was aware before the rest of us that he couldn’t always think of the correct word or follow multiple conversations, couldn’t remember which button to press on the remote control or coffee machine, but really there was nothing really ‘different’ about him, then the paranoia started, accusing my mum of fancying the next door neighbour and taking his money.

My DF did get a diagnosis of Lewy Body Dementia but that was through the memory clinic, the mri’s did not pick up any significant changes in the brain.

I hope you can get some answers OP, it must be really worrying.

TopazEyes · 22/01/2025 19:06

Just a thought; has your partner had their Vitamin b12 and vitamin D levels thoroughly tested? This is going to sound very left field, but I suffered symptoms very similar in my early 40s and it turned out to be this. I do realise that 40s is very different from 60s, and of course, possible peri played a part in mine. Just thought would mention though as worth ruling out. Hopefully it's nothing sinister.

Jellycats4life · 22/01/2025 19:10

We were told a relative only had “short term memory loss” not dementia after tests. I can only assume they aren’t allowed to say what they think it is only what tests currently show.

I think you’re right @Msmoonpie. If they don’t meet the diagnostic criteria (that day) they don’t meet the diagnostic criteria. But these tests are imperfect and there’s nothing to say that a repeat assessment shortly afterwards wouldn’t come to a different conclusion.

Msmoonpie · 22/01/2025 19:33

Jellycats4life · 22/01/2025 19:10

We were told a relative only had “short term memory loss” not dementia after tests. I can only assume they aren’t allowed to say what they think it is only what tests currently show.

I think you’re right @Msmoonpie. If they don’t meet the diagnostic criteria (that day) they don’t meet the diagnostic criteria. But these tests are imperfect and there’s nothing to say that a repeat assessment shortly afterwards wouldn’t come to a different conclusion.

Absolutely- OP needs to keep badgering them.

The decline was fairly quick after the assesment actually - it had been blindingly obvious before but it got worse.

My relative has declined physically too not so care home is really the best place for them.

LaurieFairyCake · 22/01/2025 19:37

It's very obviously dementia when he's delusional Confused

What on earth did the consultant say when you told him he thought you were out with other men and he was following you (but you weren't and he didn't follow you)

What's the benefit to them not saying it's dementia ? I get that he may not meet the narrow diagnostic criteria right in the moment he did the test

Are they trying to gatekeep new dementia drugs?

Worriedwife70 · 26/01/2025 12:10

Every one of these replies has been both helpful and insightful, thank you to everybody so much.

GP initially did the quick dementia test and said DH was fine. He repeated this test, at my request, a few times, when DP had catch up appointments after investigations, but the results are always the same. It was only at the end of the other investigations that a cardiac doctor wrote to GP saying DH should be referred re dementia as I’d pointed out short term memory loss. GP was definitely loath to take it further otherwise.

DH was seen by a consultant who is a member of the Royal Society of Psychiatrists. The consultant ordered a second, more detailed, brain scan, a detailed at home assessment with a mental health nurse, and various tests in clinic.
The consultant has said he’ll see him again in 9 months to check if situation has changed. Thanks to you posters, I can now see this is doctor speak for “he may have it, but hasn’t ticked our boxes yet”.

(When I mentioned the paranoia again, the consultant just smiled and shrugged, as if to say I’ve already told you the tests and scans are fine, there’s the door.)

It hadn’t occurred to me that DH avoids old friends because he can’t keep up with conversations, but I can see that now.

My post has been delayed as we have had another incident where I have apparently stolen a precious notebook. I refuse to feed the drama now, I’ve told him he ruins my every day, I’ve had over a year of it and I’m sick of it. If he has concerns about my behaviour towards him then, as he is still under the mental health team, he can email the mental health nurse direct. This seems to have hit home for the moment, and he’s been OK.

Going forward I will suggest we keep a day book and list all incidents, with both of us writing down our take on things. It’ll be something to present at the end of this year when he has another appointment. I’m also going to suggest that he takes a multivitamin; I tried this before but he refused, although I take them. He hates pills, sometimes stops taking his prescribed meds (statins, blood pressure, mini asprin and beta blocker).

My concern when I originally posted was that DH’s personality changes, delusions and paranoia were nothing to do with his age or with dementia. I was just wondering what else it could be.

Gatekeeping of the new dementia drugs was always at the back of my mind. Thanks to you lovely people I can now see that I have a fight on my hands going forward.

I’m so grateful to all of you, and will keep you posted.

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