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We have a diagnosis, now what?


Registered User
Oct 5, 2013
My dad has just last week been diagnosed with behavioural variant fronto-temporal dementia. An uncommon form apparently that the GP had no experience of and the incontinence nurse he was also seeing had not heard of. GP referring him to a psychiatrist but I've been offered no information, advice or anything other than I have found online and his appointment not through yet. I'm a little lost really. Naturally i am upset by the diagnosis but it does explain his changed personality and strange behaviour. Is there somewhere I can go for practical information on support for him, he has moved into sheltered accommodation this weekend and I am arranging for his meals to be delivered. What should I expect from his condition in the near future? He's driving, should he be? The GP never mentioned it. My nan has "regular" dementia (sorry for generalism but I don't know medical term) but she is more than 20 years older than my dad ( they are not related) and in residential care. Any info on where I can turn would be grateful.


Registered User
I'm sorry you are not getting the information you need. I went to a seminar recently, and was told there are about 160 different types of dementia. There are about 6 common, and a lot of "other" unknown types. Unfortunately your doctors probably know little more about it than you. Perhaps try and find out if there are any doctors you can contact (even by email) that may know more about this particular type. I hope you find someone that knows something to be of some help.


Registered User
Oct 26, 2011
I'm so sorry that you needed to join us here on Talking Point but someone is sure to be able to help.

He's driving, should he be? The GP never mentioned it.

I am able to comment on the driving issue. A diagnosis does not mean that your Dad should definitely not be driving BUT it does mean that he has to notify DVLA (and probably his insurance company). DVLA will probably come back asking for permission to talk to Dad's doctor. Depending on what the doctor says he could have his licence removed, asked to take a driving assessment or issued with a short term licence which gets reviewed every x years.

Regardless of all that if you think Dad is not safe to drive it would be a good idea to try persuade him to stop without waiting for DVLA.

If you do a search on this site you will be able to find a number of other threads where this has come up before.

Best wishes for the future


Registered User
Jan 3, 2013
I too am sorry you have found yourself here

Does your Dad get attendance allowance? Have you contacted carer's support uk? Local Alzheimer's society? There are other things you can get to help you. Are you his main carer?

It like swimming in thick mud at first isn't it? I found that when my MIL was diagnosed. I got all my information from my wonderful friends on this forum. Please keep posting as we all want to support and help you x