A new diagnosis: Disfluent Semantic Dementia

[sue38]

Well my Dad attended the Memory Clinic today and saw a new Consultant who rather put the cat among the pigeons.... he thinks that my Dad has been mis-diagnosed, or perhaps more accurately the diagnosis of mixed vascular dementia and alzheimers was too simplistic. He came up with the phrase 'disfluent semantic dementia'.

He talked to my Dad with me and my Mum in the room and then carried out the MMSE on which my Dad scored 8 having scored 14 earlier in the year. This was the first time I have been present when the test has been carried out and could see that my Dad's score is significantly affected by his inability to remember words. The consultant felt that with a score of 8 my Dad should in effect be an empty shell which clearly he isn't, and not be able to interact and have a rapport with the consultant. He was even able to have a joke with the consultant, with the consultant seemed to put great store by asking more than once 'has he retained his sense of humour?' My Dad has his sense of humour it's just the rest of us that have misplaced ours!

I mentioned Pick's disease and was instantly told 'no' as he does not exhibit inappropriate behaviour. I have had a quick look on the net to try and find more about this (against the consultant's advice ) and it seems to be a form of frontotemporal dementia. Has anyone any experience of this? I couldn't find any specific mention on the AS web site but came across this information http://www.ftd-picks.org/?p=diseases/semanticdementia

Anyway the upshot is that there is no cure (no surprise there!), we are to continue with the Ebixa as it is doing no harm (the Consultant seemed to be of the view that it rarely does anyone any good ? ), increase physical exercise, keep on top of blood pressure and cholesterol, and try and learn lines of poetry by rote....hmm.... and go back in 6 to 9 months.

My Dad made me laugh when we came out of the clinic by saying to my Mum 'Now, can you remember where you parked the car?' mimicking the way the Consultant had asked him 'Now can you remember what year we are in?' etc.. Then he laughed and said 'IT'S OVER THERE' pointing to the car.

On the plus side my Mum was very impressed with the consultant having refused to see him for 11 months because she had had a previous run-in with him professionally.

Not sure what to expect now... except for the unexpected.

 

[Skye]

Hi Sue

Disfluent semantic dementia sounds remarkable like John's PPA, and his symptoms are very similar. I'm not really clear from web links what the differences are. I'll have to spend longer looking.

We've remarked before how similar your dad seems to John. They also had to give up on the mmse because of the lack of language, so I wouldn't be too worried about the score, it's pretty meaningless in the circs.

The good news is, if it's like PPA, there's a very slow decline for 5/6 years, thereafter a rapid plunge, so you've still got some good years to enjoy.

Incidentally, Ebixa had no effect on John, but Reminyl was very effective, and it's not supposed to work with FTD patients.

Let me know if you want any more info.

Love,

 

[Grannie G]

Dear Sue,

Thank you for the update. One more label for all of us to try to understand.

Whatever the label, if it doesn`t mean any treatment other than what your father started with, ie. Ebixa, then it`s just one more, take it as it comes, situation.

I think we all have to expect the unexpected, as posts have shown how the condition progresses in so may different ways, even with similar diagnoses.

Will your father lose his language? When will he lose his language? You can only watch and wait.

But then we are all watching and waiting all he time.

Not much fun is it?

Take care

Love xx

 

[Sandy]

Hi Sue,

You might want to look at this article on the UK-based Pick's Disease Support Group website:

http://www.pdsg.org.uk/clinical_information/semantic_dementia/

Their site has a list of regional contacts. It might be worth contacting the branch in your area to see exactly what they "cover".

Take care,

Sandy

 

[sue38]

Hazel, yes my Dad and John do seem to have similarities in their dementia, their speech being particularly affected. I'm not sure how all these different types of dementia PPA, FTD and now disfluent semantic dementia (DSD ?) relate to each other.

As Sylvia says it's yet another term (and acronym) to get to grips with, but at the end of the day I don't feel it will make a huge amount of difference, except that the recognition of the impairment of language skills and the retention of other skills, means that we can put the MMSE score into perspective.

Sandy, thanks for that link. I knew someone on TP would find something I hadn't. I didn't look under Pick's disease as the consultant had dismissed it.

 

[Skye]

Sue, this is the link to a PPA handbook. I know it's not exactly what your dad has, but it might give you some pointers.


http://www.brain.northwestern.edu/ppa/handbook.html

 

[alfjess]

Hi

Just another stastistic.

The assistant manager of my parent's care home told me the other day, that there were 180 forms of dementia.

This really suprised me, but I am no expert, I have only heard, read, about eight at the most

Alfjess