Diagnosis difficulties and delay

[dadneedsanswers]

Thank you Teddy! I have just seen your response but it is pretty much spot on. There isn't a service for early onset dementia (unfortunately) but I will have a better look in to this to see if there's a more appropriate service available. Hopefully now that we have a diagnosis, social services etc might be able to point us in the right direction. It really is a minefield of which service does what...
And yes you're right, I did mean cerebellar!

Re. the drinking, were you referring to the vitamin B deficiency? This is something I'd read about. My dad has always drunk socially, but no more than 'average' amongst his friends (although in my opinion he can drink a lot! Certainly no dependency though or drinking every day).

It does sound as if the consultant has not communicated to you very well. Is there a service for early onset dementia where you are (ie under 65s?) sometimes called working age dementia. Ask the GP for the scan results- is it cerebral, cerebellar or cranial atrophy. I think your consultant was talking about cerebellar atrophy (not cranial as that is bone). Did dad ever drink alcohol heavily? The consultant you saw should be a specialist in dementia (an old age psychiatrist). Ask your GP if he can be referred to neurology services because he is relatively young. They could do a PET CT or at least re look at the MRI. Hope this helps.

 

[dadneedsanswers]

Hello there, thank you so much for your response. I work for a pharma company (legal team) and find my very small knowledge to be a hinderance so can imagine what it must be like for you as a doctor!

So - fuss well and truly kicked up and we now have a diagnosis. I feel so frustrated about the quality of care we received at the memory clinic and it's tempting to complain/write about this more, and v worrying that for some people this is the only care they'll receive. However, I am trying to focus on getting the right things in place now for my parents and saving that battle for another day...

I had a quick read of your blog in the early hours of this morning when I couldn't sleep and it seems like we've had quite a similar journey. (Has your mum been diagnosed further post her diagnosis of MCI?). Coincidentally, I started a blog over a month ago called dadwithdemenia.com. Now we have some answers and know we are actually dealing with dementia, I'll start to give a bit more time to the blogging world! x

Dear DNA

I am brand new to this forum but I have written about this exact issue in my blog mumhasdementia.com - my mum (you've guessed it) has dementia but we had a hell of a time getting a diagnosis. I'm a doctor myself but I found this more of a hinderance than a help. My advice is, if a diagnosis is important to you (and it is more for some than others) keep plugging away, keep on at the GP, ask for second opinions. Don't be the quiet, reasonable one, kick up a fuss. Good luck x

 

[stanleypj]

I think you are pretty convinced about what you've been told and that's usually a good sign. Someone making a diagnosis on the basis of a lot of evidence which has been carefully examined is able to explain exactly how they have come to the conclusion they have. You've also seen that one person's interpretation of a scan (and they always have to be interpreted) may be different from another's.

It certainly seems as though they are pulling out all the stops for your dad. Well done for getting a second opinion and it's good that your mum thinks it was worth it.

 

[Long-Suffering]

I'm still plugging away to get a diagnosis for my dad. It's like pushing a rock uphill.

LS

 

[Daughter-MHD]

Hello there, thank you so much for your response. I work for a pharma company (legal team) and find my very small knowledge to be a hinderance so can imagine what it must be like for you as a doctor!

So - fuss well and truly kicked up and we now have a diagnosis. I feel so frustrated about the quality of care we received at the memory clinic and it's tempting to complain/write about this more, and v worrying that for some people this is the only care they'll receive. However, I am trying to focus on getting the right things in place now for my parents and saving that battle for another day...

I had a quick read of your blog in the early hours of this morning when I couldn't sleep and it seems like we've had quite a similar journey. (Has your mum been diagnosed further post her diagnosis of MCI?). Coincidentally, I started a blog over a month ago called dadwithdemenia.com. Now we have some answers and know we are actually dealing with dementia, I'll start to give a bit more time to the blogging world! x

Excellent - I'll take a peek! Glad you've got a diagnosis - it does help both in terms of planning and managing your own expectations. I haven't updated the posts regarding mum's progress on mumhasdementia.com yet - seem to have been distracted by posting about other stuff - but yes, we do have a diagnosis of Alzheimer's now which came as a shock to nobody. Reminds me that I left the story there and need to crack on and update it! Will follow your bog with interest - as you say, it does sound as though we have similar stories and I have found writing about the experience much more therapeutic than I anticipated. Good luck.

 

[kingybell]

Firstly I'd say you are on the right track getting tests done.
My mil who was 56 but showing signs from about aged 53-54 it took 6 months to get a diagnosis. When we did it was still a little inconclusive (mixed dementia Ftd and Alzheimer's) they rediagnosed her last month they say she now has Alzheimer's and vascular.
It is slow because they will need to let the symptoms play out over time and brain scans don't always show the signs fully.

Keep kicking and screaming and if he's not had a series of tests mmse (I think they are called) done over time please push for them. As others say it's not like cancer or physical illness which can be pinpointed. You must keep stressing the changes in your dad and how he has deteriorated over time, you are the best people to detect this.
Don't give up as it so easy to do so. I left my job and spent 4 months pushing for my mil and now pleased to say we have diagnosis, she's on the right benefits and I'm back working and career in track.