My husband was diagnosed with FTD in April 2021. His speech is very badly affected and its heartbreaking to watch him trying to make me understand what he wants to say. He usuaIly just gives up. I have spoken to a speech therapist who advised me to create a memory book for him to point at but that does not help when he wants to ask a question. Real life is not about pointing to a mug when you want a coffee, there is so much more to speech than that. I would be grateful for any advice anyone can give.
Speech problems and FTD
- Thread starter Thedoonegirl
- Start date
Hi I'm Not a career or family member I have been living with FTD myself for 22 years and yes speech was also a problem I had to overcome bearing I was still working in an Office it wasn’t great that my thoughts/words got lost before I could actually say what I actually wanted to this was extremally frustrating and I use a lot of blue swear words but fortunately started using a computer in 1984 when we used the old dos so by time of my diagnoses in 1999 the Office word / excel software and now the iPhones & iPads were are able email and text obviously now it’s a piece of cake however I can still talk maybe its difficult to understand at times but and after 22 years my wife and family know exactly what I’m saying
I don’t spend time worrying about something I can’t change epically after 22 years
You didn’t mention the persons age ?? if it helps I was 56 when first diagnosed
I don’t spend time worrying about something I can’t change epically after 22 years
You didn’t mention the persons age ?? if it helps I was 56 when first diagnosed
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My OH has symptoms of FTD although he does not have a diagnosis.
His speech has been severely affected and now says very little. What he does say has a lot of "thingies" and "that" in it. Conversations have long gone - even when he could still remember words. As you say, there is more to speech than just pointing to pictures, but when it is speech/language that is affected then that may be what you are reduced to.
I now mostly know what he is trying to convey, but everything revolves around his needs as I don't think it now occurs to him that I have needs too.
It's a very lonely existence.
His speech has been severely affected and now says very little. What he does say has a lot of "thingies" and "that" in it. Conversations have long gone - even when he could still remember words. As you say, there is more to speech than just pointing to pictures, but when it is speech/language that is affected then that may be what you are reduced to.
I now mostly know what he is trying to convey, but everything revolves around his needs as I don't think it now occurs to him that I have needs too.
It's a very lonely existence.
Thinking laterallly... could you contact one of the societies who support people with locked-in syndrome, MND or similar things? They seem to have done a lot of work on devices to help people communicate and may have some suggestions for you.
I think it depends on why you have lost your speech @Jaded'n'faded
People with locked in syndrome and similar know what word they want to say - it is in their mind, they just cannot get their mouths to say it. In OHs case, though, he is able to physically say the words, but unfortunately the words he wants to say are not there in his mind. Often he will come up eventually with a word that is vaguely similar to the one he wants - mug/jug or bath/shower for example. Sometimes he will go all round the houses to describe the word he wants and sometimes he will come out with a nonsense word.
He is also losing understanding of what words mean. He reads and has started asking me what words mean. A few days ago he asked me what a door knob was
People with locked in syndrome and similar know what word they want to say - it is in their mind, they just cannot get their mouths to say it. In OHs case, though, he is able to physically say the words, but unfortunately the words he wants to say are not there in his mind. Often he will come up eventually with a word that is vaguely similar to the one he wants - mug/jug or bath/shower for example. Sometimes he will go all round the houses to describe the word he wants and sometimes he will come out with a nonsense word.
He is also losing understanding of what words mean. He reads and has started asking me what words mean. A few days ago he asked me what a door knob was
Hi I just want to add to my previous reply with regards to speech Not getting your word out doesn’t mean your brain is not active but again only speaking from my own experiences
as I said previously I was diagnosed 22 years ago I’ve been a Talking Point member for 16 years there are other TP members who joined around that same year in {2005} some will probably remember Me also my threads or replies from 16 years ago albeit I have calmed down somewhat in honesty they would probably say my brain is still as active today as it was 16 years ago { I’m first to admit sometimes it’s difficult to complete a sentence verbally } and that was frustrating but I learnt to adjust and over come that problem
the point I’m making although the words get lost before I can actually verbally say but my Brain is still active I still know what I want to say or do
ok I’m not well educated academically but I’m certainly switched and aware of the dangers around me and can still fight my own corner. I have brilliant wife and two children but they have their own lives to live so basically I need to say positive about my dementia or other medical issues
as I said previously I was diagnosed 22 years ago I’ve been a Talking Point member for 16 years there are other TP members who joined around that same year in {2005} some will probably remember Me also my threads or replies from 16 years ago albeit I have calmed down somewhat in honesty they would probably say my brain is still as active today as it was 16 years ago { I’m first to admit sometimes it’s difficult to complete a sentence verbally } and that was frustrating but I learnt to adjust and over come that problem
the point I’m making although the words get lost before I can actually verbally say but my Brain is still active I still know what I want to say or do
ok I’m not well educated academically but I’m certainly switched and aware of the dangers around me and can still fight my own corner. I have brilliant wife and two children but they have their own lives to live so basically I need to say positive about my dementia or other medical issues
Hi @Countryboy ,
I suppose it's like all forms of dementia - some people are badly affected by symptoms that other people only get slightly. It sounds like you have only got slight problems with speech and I hope this remains. OH, unfortunately is badly affected by speech problems. He too knows what he wants to say, but he cannot remember the words - they are missing from his mind. It's a bit like when you have the word you want just on the tip of your tongue, but you can't get hold of it.
He is now mostly silent
I suppose it's like all forms of dementia - some people are badly affected by symptoms that other people only get slightly. It sounds like you have only got slight problems with speech and I hope this remains. OH, unfortunately is badly affected by speech problems. He too knows what he wants to say, but he cannot remember the words - they are missing from his mind. It's a bit like when you have the word you want just on the tip of your tongue, but you can't get hold of it.
He is now mostly silent
Hi canary
I realize dementia can affect people differently I also think a person’s age is probably a contributing factor
That’s why I emphasize and hopefully make clear everything I write or advice I share is always based on my own personal experience of living with a dementia diagnoses myself nothing more