Why so hard to get a diagnosis?

[Notaclue]

Hello

I have been a member of this forum for two years but rarely post. I have been convinced my mum has had dementia since late 2020 but we are STILL struggling to a get a diagnosis. It's really unbelievable and utterly exasperating to those of us who spend time with her.

She has passed two memory tests (the mini one with GP) and longer ACE III one (though that was a year ago).

I am wondering why she keeps passing when everyone who spends time with her can plainly see she has major problems processing information and retaining it for any length of time. She is now at the stage she will merrily repeat a story four times in a row and fell victim to a very obvious scam recently.

I was wondering if vascular dementia presents differently - is it possible she has that type of dementia and that might explain why she can still pass the mini memory test? (She has never had an obvious stroke, but perhaps she has had TIAs we've been unaware of?)

Or is the test just a bit rubbish? I feel the fact she completely forgot my 40th birthday is rather more indicative of a problem than whether she can remember who the PM is (she has rolling news on the TV eight hours a day!).

Or could it be that she is/was so intelligent and is sort of 'falling from a great height' so to speak - she has two postgraduate degrees. She's the kind of person who could shout out winning answers to Countdown and University Challenge!

She is completely in denial/lacks insight herself, so she would refute any problems! She has also refused to get a CT scan.

I know no one can say for sure, I'm just interested in different opinions!

Thank you!

 

[Sarasa]

Welcome to Dementia Talking Point @Notaclue . I think the fact that your mother is very well educated and intelligent might have something to do with it. My mother in law, who was an academic, was struggling with day to day stuff while still able to critique recent productions of King Lear that she’d seen. It was though academic rigour gave her brain a framework that helped her hide a lot of her symptoms.
One thing you could do is keep a diary of your concerns and then send her GP a bullet pointed list of them and ask for a review.
Im sure others will be along soon with their suggestions.

 

[Notaclue]

Welcome to Dementia Talking Point @Notaclue . I think the fact that your mother is very well educated and intelligent might have something to do with it. My mother in law, who was an academic, was struggling with day to day stuff while still able to critique recent productions of King Lear that she’d seen. It was though academic rigour gave her brain a framework that helped her hide a lot of her symptoms.
One thing you could do is keep a diary of your concerns and then send her GP a bullet pointed list of them and ask for a review.
Im sure others will be along soon with their suggestions.

Thank you so much, that's very interesting to hear about your mother in law. Sorry you've been here also!

Yes I have two years' worth of incidents with dates logged and have contacted her GP several times. He is finally requesting an urgent assessment (CT scan and consultation with a psychiatrist) though she passed the mini memory test earlier this week when he called on her at home following the scam incident.

 

[Lawson58]

My husband has always passed those tests easily and I think they are just a way of watching the progress of a disease. Some people fail dismally and they are those who tend to conform to the usual picture of Alzheimer’s or the other common dementias.

My husband is no academic but has played bridge for many years and continues to do so mostly everyday.

However, he cannot remember the first thirty odd years of his life and is showing confusion and other problems. He seems to be slowly disappearing into his own foggy world and now his short term memory is also failing him.

I think the those tests have a role in diagnoses and the fact that your mum does well on them is also telling the doctors something but it’s just not what they thought they were going to get.

 

[UncleP477y]

Hi @Notaclue ,

You don't mention whether your mother takes any medications. My mother's blood pressure meds were changed to a beta-blocker, and after that, I noticed that her memory went to pieces. I eventually managed to get her to the GP for a face-to-face consultation. The GP said she gave Mum a memory test, although she wouldn't allow me to remain in the room during this, and claimed she scored 29/30. I believe this is total twaddle as Mum can't remember simple things, plus she repeats things constantly, yet the GP won't entertain trying a different blood pressure med to see if it makes any difference.

As Mum is of the old belief that the doctor is always right, she will not even listen any further to me and just tells me to shut up.

If your mother is taking medication it may be worth discussing this as a possibility with your GP. Hope this helps.

 

[Notaclue]

Hi @Notaclue ,

You don't mention whether your mother takes any medications. My mother's blood pressure meds were changed to a beta-blocker, and after that, I noticed that her memory went to pieces. I eventually managed to get her to the GP for a face-to-face consultation. The GP said she gave Mum a memory test, although she wouldn't allow me to remain in the room during this, and claimed she scored 29/30. I believe this is total twaddle as Mum can't remember simple things, plus she repeats things constantly, yet the GP won't entertain trying a different blood pressure med to see if it makes any difference.

As Mum is of the old belief that the doctor is always right, she will not even listen any further to me and just tells me to shut up.

If your mother is taking medication it may be worth discussing this as a possibility with your GP. Hope this helps.

Thank you so much. That sounds like a very frustrating situation you are experiencing! I hope you get to the bottom of it soon. My mum doesn't take any medication so in our case it can't be that but I really appreciate your reply.