What if we don’t get a diagnosis?

[OnwardsUpwards]

Hi, I’ve posted previously about my mum’s change of behaviours are memory loss and how we suspect she has dementia. The hospital doctor when she has pneumonia previously said he suspected frontotemporal dementia? This is because many of her changes are in behaviour rather than memory.

Anyway, she had her assessment awhile ago and we are expecting the diagnosis phone call today. I am fully confident that they will say there is nothing wrong, but there absolutely is something going on without a doubt. What do I do?

Are there any particular things I can request, such as a more detailed assessment, alternative routes? The original doctor said that if it is frontotemporal dementia then a single memory clinic visit wouldn’t be enough to make a diagnosis, but I have no idea what else to ask for. I know I am expecting the worst but based on how she ‘performed’ at her appointment I don’t expect they will feel that she has dementia.

I should’ve posted this days ago and I’ve left it really late, but any if anyone has any words of advice this morning I’ll be really grateful, I will let you know how we get on. Thanks X

 

[CardiffGirlInEssex]

How very stressful for you. I don't know about FTD but for Alzheimer's a CT scan of the brain is often done after the memory clinic appointment and before a diagnosis is confirmed. That was definitely the case for my mum and it was the scan result that confirmed it.

 

[canary]

Sometimes with FTD you need a PETscan or a SPECTscan to pick up damage rather than an MRI.
See what the memory clinic says first, though.

 

[Harky]

Hi, I’ve posted previously about my mum’s change of behaviours are memory loss and how we suspect she has dementia. The hospital doctor when she has pneumonia previously said he suspected frontotemporal dementia? This is because many of her changes are in behaviour rather than memory.

Anyway, she had her assessment awhile ago and we are expecting the diagnosis phone call today. I am fully confident that they will say there is nothing wrong, but there absolutely is something going on without a doubt. What do I do?

Are there any particular things I can request, such as a more detailed assessment, alternative routes? The original doctor said that if it is frontotemporal dementia then a single memory clinic visit wouldn’t be enough to make a diagnosis, but I have no idea what else to ask for. I know I am expecting the worst but based on how she ‘performed’ at her appointment I don’t expect they will feel that she has dementia.

I should’ve posted this days ago and I’ve left it really late, but any if anyone has any words of advice this morning I’ll be really grateful, I will let you know how we get on. Thanks X

My wife had a brain scan a couple of years ago which showed nothing. She also eventually passed some kind of memory test. As far as he was concerned, she didn't have dementia. Being with her 12/7 i know she has dementia or some form. A second doctor is convinced she has it and recorded it on her medical records. He asked if we want further assessments but rightly or wrongly i declined. Felt i didn't want to put her through any more stress. I feel that no matter what type she has, there's no cure and as long as I can manage all her needs and the information on this forum we're managing fine. The information on HOSTESS MODE was particularly helpful. Am I wrong not giving her another assessment and if so, what would be the benefits.

 

[OnwardsUpwards]

Yes she had a CT scan but they messed up the appointments and it was only 2 days ago, so they may not even have seen it yet!

 

[OnwardsUpwards]

My wife had a brain scan a couple of years ago which showed nothing. She also eventually passed some kind of memory test. As far as he was concerned, she didn't have dementia. Being with her 12/7 i know she has dementia or some form. A second doctor is convinced she has it and recorded it on her medical records. He asked if we want further assessments but rightly or wrongly i declined. Felt i didn't want to put her through any more stress. I feel that no matter what type she has, there's no cure and as long as I can manage all her needs and the information on this forum we're managing fine. The information on HOSTESS MODE was particularly helpful. Am I wrong not giving her another assessment and if so, what would be the benefits.

I was hoping that we could get a diagnosis, even if there is no treatment, to help open up support options for mum and dad (mum is 85 and dad is 88).

 

[lollyc]

I was hoping that we could get a diagnosis, even if there is no treatment, to help open up support options for mum and dad (mum is 85 and dad is 88).

Having read @canary 's recent post re: lack of diagnosis and associated problems, you are right to want some sort of "label", even if that is just something like "unspecified dementia", which is what my Mum has.

 

[OnwardsUpwards]

So, I spoke the the doctor for over 40 minutes, she was amazing.

In a nutshell she said that the scan showed some generalised shrinkage and a degree of frontal micro vascular ischemia but not enough to make a definite diagnosis. They are going to have a meeting and consider whether she needs neuropsychological testing to be more precise.

But, she is split between whether it is frontotemporal dementia and frontal Alzheimer’s and is determined to carry out whatever other tests are needed to make an accurate diagnosis.

She mentioned the possibility of some medication that may help if it’s the frontal Alzheimer’s but that depends on Mum’s heart so she is arranging an ECG too.

So, not a diagnosis as such but a massive leap forwards, and the doctor is committed to finding the right diagnosis for mum ?

 

[Sarasa]

That is such good news. Good that they are really working on a proper diagnosis.

 

[OnwardsUpwards]

It is, I am so relieved and feel very lucky to have someone so invested in my Mum’s case. X