Hi. My dad has been diagnosed with frontal temple lobe dementia this week. I'm really worried about how long we have left with him as I have started to get symptoms 4 years ago & I have read that as an average people live with this condition for 8 years. He is only 61.He lives on his own. I work & have a one year old & live 30 mins away. I wouldn't be able to be his carer. The doctor said he was going to contact social services so am waiting to hear from them not sure how long it will take to hear from them? Anyone have a similar situation or have any words of wisdom?
Dad has been diagnosed with frontal temporal dementia
- Thread starter Zoeclair
- Start date
Hello
Welcome to talking point. I know it is hard but the advice I was given is not to think of timescales, I think quite often when a diagnosis is gained you look back in hindsight and realise that there have been symptoms before or will have known of symptoms before but had a long journey to diagnosis. The 8 years is just an average.
My husband also has FTD, well that it the latest best diagnosis. There are people that have lived 20 years from diagnosis, others less. As many in here will say you have seen one person with dementia the you have seen one person, so averages in terms of timespans and the stages is different for everyone.
I find this forum useful http://www.ftdsupportforum.com, but be aware like all forums it is often the people that are struggling or facing challenges that use the forums to ask for advice or let off steam, so it is not the experience of everyone.
The challenges can be different with FTD to Alzheimer's, so for my husband memory of dates, times, what to do when is retained. He struggles with communication and there is some behvaioural elements.
Best advice is to take one day at the time and other than the necessary LPA and wills etc, just enjoy what he can still do now.
Welcome to talking point. I know it is hard but the advice I was given is not to think of timescales, I think quite often when a diagnosis is gained you look back in hindsight and realise that there have been symptoms before or will have known of symptoms before but had a long journey to diagnosis. The 8 years is just an average.
My husband also has FTD, well that it the latest best diagnosis. There are people that have lived 20 years from diagnosis, others less. As many in here will say you have seen one person with dementia the you have seen one person, so averages in terms of timespans and the stages is different for everyone.
I find this forum useful http://www.ftdsupportforum.com, but be aware like all forums it is often the people that are struggling or facing challenges that use the forums to ask for advice or let off steam, so it is not the experience of everyone.
The challenges can be different with FTD to Alzheimer's, so for my husband memory of dates, times, what to do when is retained. He struggles with communication and there is some behvaioural elements.
Best advice is to take one day at the time and other than the necessary LPA and wills etc, just enjoy what he can still do now.
Well I don’t want upset you here and yes were all different for sure, but I was diagnosed with Fronto-temporal-dementia in 1999 aged 57 been living with this now for 16½ years probably I will live a lot more years unless something else bumps me off and I’m 99.9% certain sure it won’t be dementia
Hi Zoe, welcome to TP
As Tony says there's no fixed timescale everyone is different, it's more a matter of dealing with what's happening than trying to predict what will happen.
You should contact Social Services and get them to do an assessment of his needs, they will come and talk to him and tell him what help and benefits are available to him. It also gets him on their radar for the future which may come in useful later on, you can self-refer for this it doesn't need to be done by the GP. Google the name of his local Authority and "Vulnerable Adult Assessment" that should do it and you can probably do it on line, they are required by law to do an assessment if you ask.
As he has a diagnosis then in some respects it stops to be a medical problem so you'll get more help from Social Services, once diagnosed and put on the appropriate medication that's all a GP's can do.
The figure of 8 years as a expectancy is based on an average aged diagnosis, anyone diagnoses under 65 is classed as "Early Onset" so I wouldn't put too much faith in it in your dad's case.
"Words of wisdom" Don't volunteer for anything, you're a mother to a 1 year old child and have a job too, think of you and your family first and don't let guilt or the Social Services push you to the limit, they seem happy to sit back and let you do it all, don't be morally blackmailed into doing anything you don't want to. A bit harsh maybe he's paid taxes all his life so it's time to get some back, nobody has children to "grow their own" carers it is the states responsibility, do what you can but do what you want too.
K
As Tony says there's no fixed timescale everyone is different, it's more a matter of dealing with what's happening than trying to predict what will happen.
You should contact Social Services and get them to do an assessment of his needs, they will come and talk to him and tell him what help and benefits are available to him. It also gets him on their radar for the future which may come in useful later on, you can self-refer for this it doesn't need to be done by the GP. Google the name of his local Authority and "Vulnerable Adult Assessment" that should do it and you can probably do it on line, they are required by law to do an assessment if you ask.
As he has a diagnosis then in some respects it stops to be a medical problem so you'll get more help from Social Services, once diagnosed and put on the appropriate medication that's all a GP's can do.
The figure of 8 years as a expectancy is based on an average aged diagnosis, anyone diagnoses under 65 is classed as "Early Onset" so I wouldn't put too much faith in it in your dad's case.
"Words of wisdom" Don't volunteer for anything, you're a mother to a 1 year old child and have a job too, think of you and your family first and don't let guilt or the Social Services push you to the limit, they seem happy to sit back and let you do it all, don't be morally blackmailed into doing anything you don't want to. A bit harsh maybe he's paid taxes all his life so it's time to get some back, nobody has children to "grow their own" carers it is the states responsibility, do what you can but do what you want too.
K
There are excellent support groups for the rarer dementias run out of University College London. Have a look at the fronto temporal support group www.ucl.ac.uk/drc/ftdsupport
where there is a wealth of information
Tre
where there is a wealth of information
Tre
Hi my dad was diagnosed with frontal temporal lobe dementia a month ago. When I left the specialists office I sad do I need to do anything, he said no it will all get sorted for you social services will be in touch and you will get the help you need. I left feeling like there will be a support system where I would get some help ash dad lives on his own & doesn't look after himself very well. I called social services & they said they had received a referal but to the wrong department. The doctor that diagnosed him doesn't speak to people he has a secretary who is so unfriendly & unhelpful. I feel completely lost & frustrated I feel that it's such a struggle to do anything with no help. I work & have a one year old & my dad lives on his own in another town & I don't drive. I have to sort out his benefits etc & asking dad to get the documents I need is hard as he doesn't understand what I'm talking about. Who can help ? I thought there would be someone that helps with all of this I'm struggling with the fact that my dad has dementia & now have to struggle with people telling me that all these people are passing the buck
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