Frontotemporal Discussion

On Frontotemporal Degeneration

Dementia. There, I’ve said it: the big D word. Frontotemporal Dementia (FTD) is a rare form of dementia that affects behaviour and possibly speech. But, unlike Alzheimer’s it can leave memories intact.

So do I have FTD? Easy answer is that no-one at this stage knows. FTD is notoriously hard to diagnose, and is often misdiagnosed as some form of mental illness. For some time I have believed that symptoms I have must be caused by some form of dementia- but I can’t be sure, and the science is uncertain.

Generally FTD is diagnosed by taking into account a number of things: behaviour, neuro-imaging and specialist neuro-psychological tests together with standardised cognitive tests like Addenbrooks. And it’s sometimes claimed that the only time a definitive diagnosis can be given is post-mortem.

In my case I have a set of behaviours that seems to fit with bvFTD, that is behavioural variantFTD. I struggle with apathy, loss of empathy and loss of humour amongst other things.

I have had a CT scan of my brain which suggests ‘some degree of atrophy’ especially to my frontal lobes – but CT brain scans are a fairly crude way of looking at things. They are, if you will, like poor definition satellite aerial photographs. What’s needed is a much more detailed map of the brain’s highways and bye-ways. So I am now on a waiting list for a SPECT scan, which shows blood flow within the brain.

So, I have indicative behaviours and neuro-imaging- which suggest I may have some form of FTD. But that’s not the end of the story. For one thing, I am conscious of changes to my personality – and in general people with FTD don’t realise they have the condition.

Then there’s the fact that I score as highly as possible on cognition tests – and my consultant psychiatrist assured me that if I did have FTD then he would expect to see at least some measure of impairment.

So where does that leave me? Well I think I can fairly safely say that I have Frontotemporal Disturbance. And at the moment that’s as far as it goes.