Disagree with diagnosis

[DaisyChain10]

Hi all! My dad was diagnosed with atypical Alzheimer’s 2 years ago. It took a LONG time to diagnose him but eventually the doctor said that’s what he thought.

The thing is, dads main issue is his speech, not his memory. His memory test scores are actually quite good and consistent. His speech on the other hand is difficult to understand and he has word finding difficulties and confuses sentences when writing. I really think he has FTD/PPA.

I live somewhere where getting a second opinion isn’t really an option unless we travel. I’m not sure what I’m asking really. Does anyone know of any private specialists in FTD? Does he need to see a neurologist or neuropsychologist? Is it possible his diagnosis could be wrong?

Thank you for reading x

 

[canary]

Hello @DaisyChain10

The thing about atypical Alzheimers is that, unlike typical Alzheimers which starts in the hippocampus and the first symptom is short-term memory loss, atypical Alzheimers starts in the frontal lobe and gives symptoms very, very similar to FTD. The only real difference is that atypical Alheimers is due to Alzheimers plaques and FTD is due to Picks Bodies. Its not always easy to tell the two apart, even with a PET scan that will show Alzheimers plaques.

Has your dad been prescribed donepezil and is it helping?

 

[DaisyChain10]

Hello @DaisyChain10

The thing about atypical Alzheimers is that, unlike typical Alzheimers which starts in the hippocampus and the first symptom is short-term memory loss, atypical Alzheimers starts in the frontal lobe and gives symptoms very, very similar to FTD. The only real difference is that atypical Alheimers is due to Alzheimers plaques and FTD is due to Picks Bodies. Its not always easy to tell the two apart, even with a PET scan that will show Alzheimers plaques.

Has your dad been prescribed donepezil and is it helping?

He’s had a SPECT scan but it didn’t show much change.

Yes he’s on donepezil and Memantine. I guess his testing has stayed consistently ok/good so perhaps it has helped, but it’s hard to tell otherwise really. I guess just because it’s mainly speech issues, I wondered if it was something different. But I did suggest that to the doctor and they were more for atypical Alzheimer’s.

 

[canary]

It sounds like the doctors have considered FTD and explored the possibility, but decided on atypical Alzheimers

From a carers view point the two are so similar that Im slightly bemused about why you want to take it further. There is no treatment for FTD.

 

[Lawson58]

A long time ago my husband was diagnosed as atypical Alzheimer’s. Long story but I now know that at that time it was used when the doctor didn’t really know what he had.

Nine years later and after several changes in diagnosis, the doctor considered him to be non diagnosed and we haven’t been back since.

So long as you are getting the support you need, does it really matter?

 

[DaisyChain10]

I guess so. I suppose as long as he’s under the relevant team they can continue to assess him and make him as comfortable as possible. Either way we know he has dementia, it doesn’t matter what type..