I think my dad has Frontotemporal dementia

[Bob74]

For a number of years the family have suspected that my dad has some sort of dementia. From our observations, we have two nurses in the family, we suspect Frontotemporal dementia as this fits his symptoms best.
He has been to the memory clinic who say there is nothing wrong with him as he passed their Maths test. The problem is he was an engineer with a degree in Maths and that part of his brain doesn't seem to have been effected by what ever he has. In his speech he struggles with big words and will use lots of small ones to get to the description. He is also having mood swings and his attention span seams to be getting smaller.
My mother-in-law has Alzheimer's and we are 100% sure it isn't that.
Has anyone got any ideas of how we can move forward?

 

[Violet Jane]

Not all dementia starts with memory loss, and educated people tend to do well on certain tests (e.g. counting backwards in sevens), which bumps up the score. I would start keeping a detailed record of odd or worrying behaviours and, armed with this, go back to the GP or the memory clinic. It's not uncommon for dementia to be discounted, particularly in the case of younger people and people who 'pass' the basic memory assessments. Mood swings and concentration problems are put down to depression, stress and anxiety or problems at work or at home. Sometimes you have to be very persistent. It may be of little comfort but all people with dementia will deteriorate and eventually more obvious symptoms including memory loss will appear, at which point it will be clear that the person does have dementia.

 

[Bob74]

This is where we are at. Last week he had a hospital appointment mum asked him to get dressed which he apparently did or so everyone thought. When he got to hospital he had just put his outside clothes over his PJs. He hadn't a clue what he done.

 

[Lawson58]

I confess to not knowing much about Frontotemporal dementia but just wanted to comment about abilities with maths as this rings a bell with my husband.

He came from a family of bookmakers and he worked in the shop writing the betting slips, calculating payouts from when he was a boy. His maths skills have remained very good while other things are failing him. He was also an avid card player all his life and continues to play bridge several times a week. Most of the more complicated card games have elements of maths in their eg. card distribution and the odds of where key cards lie or when they should be played.

His memory loss was very different in that he was affected mostly by loss of the early years of his life and recent memory problems have become a problem in the last couple of years.

 

[Angel55]

Hi 💗

Everyone will be different in their illness is how I have come to understand it.

Dad was initially diagnosed with MCI. We always felt that wasn't really correct but the testing the memory clinic did came out in the scoring as that so we went along with that for a while. We kept notes of things we noticed and we would include our own experiences as well with the consultant not just the testing.

Fast forward a few years and Dad has now been diagnosed with dementia.

If you came and had a chat with him and stayed a few minutes you would possibly not know anything was wrong. His verbal language is still really good and that is compensating for the areas that are not good at all. For us that can cause all sorts of problems as he can chat away and people think he is fine but he really really isn't.

I know now of course that dementia is far more than just simply forgetting.

Do you think the memory clinic would review your Dad in a few months time? In the meantime you can still assess help without a diagnosis , we claimed for attendance allowance, pension credit, OT assessments for example.

 

[maggie6445]

This is where we are at. Last week he had a hospital appointment mum asked him to get dressed which he apparently did or so everyone thought. When he got to hospital he had just put his outside clothes over his PJs. He hadn't a clue what he done.

Sorry ,this made me laugh. I know exactly how you must feel. My partner would do this every morning and at night the reverse if I didn't insist he got undressed first. He often tries to wear slippers in bed,oh ,and slippers inside his shoes.I need eyes in the back of my head if I I don't want to waste energy undoing the errors. I'm fortunate in that he's very compliant and passive and generally let's me organise. Just hard work living two lives.
His diagnosis was Alzheimer's / lewy body in 2021.

Maybe the hospital will realise there's something amiss! Best wishes.