FTD

[Frank Streat]

My wife has been diagnosed with FTD. She is only 60 years old. She will be going into care shortly.
It is a genetic form and my 2 sons have a 50% chance of inheriting this condition.
We are struggling as a family to deal with this devastating situation.
We are after advice and support as to how to deal with this nightmare.

 

[Shedrech]

Hello @Frank Streat
a warm welcome to DTP

your family have a lot to cope with right now, so it's good that you have found this supportive site

Maybe this recent thread will have something useful

Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

Hi everyone, Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. It can be particularly difficult when you're living with - or worried about - a rare dementia, or when you care for someone who is. Alzheimer's is the most...

forum.alzheimers.org.uk

have a read round the forums, settle in and post with anything that's on your mind as members are helpful and full of useful suggestions

 

[Countryboy]

My wife has been diagnosed with FTD. She is only 60 years old. She will be going into care shortly.
It is a genetic form and my 2 sons have a 50% chance of inheriting this condition.
We are struggling as a family to deal with this devastating situation.
We are after advice and support as to how to deal with this nightmare.

Hi Frank Street prior to your Wife having an FTD diagnoses did she undergo any PET or SPECT brain scans the reason I’m asking I was diagnosed with Alzheimer’s age 56 then after the brain scan FTD age 60 and I plodding along for 21 years ok a few problems but that’s expected

 

[Philbo]

My wife has been diagnosed with FTD. She is only 60 years old. She will be going into care shortly.
It is a genetic form and my 2 sons have a 50% chance of inheriting this condition.
We are struggling as a family to deal with this devastating situation.
We are after advice and support as to how to deal with this nightmare.

Hello

It's sad to hear your news and it is indeed, devastating for all the family.

My wife was diagnosed with FTD in Jan 2014 at the age of 63. Her deterioration was initially quite rapid (loss of cognitive abilities, difficulties with speech etc) but it then plateaued to a more slow progress over the next few years.

Things seemed to take more of a dramatic decline last year, following a urinary infection and she ended up needing nursing care last September.

Sadly, following another infection just before Christmas, she passed away in January. I was grateful I was able to care for her at home for 6 years but it was tough on me and out 2 sons to watch the decline.

My youngest son did ask whether he should get tested (he's like his mum was, a bit more of a worrier) but I questioned whether he really wanted to know what could happen and he decided against it.

We all just took every day as it came, trying to keep things as normal as possible. I was able to still get her out and about (though her mobility gradually got worse) until the last 6 months, when she lost all mobility following the infection and ended up in nursing care.

The local pub that we "adopted" provided both a safe environment for her and a lifeline of good friends for us both. They are now helping me through this difficult time.

I wish you well in dealing with your own situation and if you have any specific question, please do ask.

Regards
Phil

 

[Frank Streat]

Hello

It's sad to hear your news and it is indeed, devastating for all the family.

My wife was diagnosed with FTD in Jan 2014 at the age of 63. Her deterioration was initially quite rapid (loss of cognitive abilities, difficulties with speech etc) but it then plateaued to a more slow progress over the next few years.

Things seemed to take more of a dramatic decline last year, following a urinary infection and she ended up needing nursing care last September.

Sadly, following another infection just before Christmas, she passed away in January. I was grateful I was able to care for her at home for 6 years but it was tough on me and out 2 sons to watch the decline.

My youngest son did ask whether he should get tested (he's like his mum was, a bit more of a worrier) but I questioned whether he really wanted to know what could happen and he decided against it.

We all just took every day as it came, trying to keep things as normal as possible. I was able to still get her out and about (though her mobility gradually got worse) until the last 6 months, when she lost all mobility following the infection and ended up in nursing care.

The local pub that we "adopted" provided both a safe environment for her and a lifeline of good friends for us both. They are now helping me through this difficult time.

I wish you well in dealing with your own situation and if you have any specific question, please do ask.

Regards
Phil

Hello

It's sad to hear your news and it is indeed, devastating for all the family.

My wife was diagnosed with FTD in Jan 2014 at the age of 63. Her deterioration was initially quite rapid (loss of cognitive abilities, difficulties with speech etc) but it then plateaued to a more slow progress over the next few years.

Things seemed to take more of a dramatic decline last year, following a urinary infection and she ended up needing nursing care last September.

Sadly, following another infection just before Christmas, she passed away in January. I was grateful I was able to care for her at home for 6 years but it was tough on me and out 2 sons to watch the decline.

My youngest son did ask whether he should get tested (he's like his mum was, a bit more of a worrier) but I questioned whether he really wanted to know what could happen and he decided against it.

We all just took every day as it came, trying to keep things as normal as possible. I was able to still get her out and about (though her mobility gradually got worse) until the last 6 months, when she lost all mobility following the infection and ended up in nursing care.

The local pub that we "adopted" provided both a safe environment for her and a lifeline of good friends for us both. They are now helping me through this difficult time.

I wish you well in dealing with your own situation and if you have any specific question, please do ask.

Regards
Phil

Hi Phil
Thanks for taking the time to reply to me and offer support.
I am so sorry to hear of your loss, at least she is now at peace.
My wife has been unwell for 5 years which was thought to be mental health. In 2018 she was diagnosed with FTD without any scans. I obtained a second opinion asking for a Spec scan which was clear and she passed cognitive tests. They thought she did not have it. Genetic testing revealed she had in October 2019. She is currently in a psychiatric hospital under Section 3 MHA as she is so anxious and suicidal. It is heartbreaking seeing her suffer. She is also struggling to speak which really frightens her. Shortly she will be going into care as I could not keep her safe.
My coping mechanism is distraction. My passion is golf which takes my mind of it and having banter with my friends. I am retired from my career but work part time to keep busy. My sons don’t wish to be tested also which I fully support. Hopefully within 10 years there will be a cure with stem cell treatment as there are breakthroughs in Australia.
I have lost my wife and all I want is for her no longer to suffer.
Have you any recommendations of organisations that offer support specifically for FTD?
Take care
Frank

 

[Louise7]

Have you any recommendations of organisations that offer support specifically for FTD?

The Rare Dementia Support Group offer support for FTD, as well as other types of less common dementia: https://www.raredementiasupport.org/

 

[MAMMYGRANNY]

Hi Frank,
The FTD support forum has members from all over the world and is very supportive and informative.

Through that forum I found out that there are people who don't have full penetrance ie they have the gene but do not go on to develop the illness. You could Google 'penetrance in Ftd' to find out in detail about this.
So even if one of your sons were unfortunate enough to have the gene he may not develop the illness. I hope this may be of consolation to you as I remember the desolation I felt when I found out about that 50:50 statistic just after my husband's diagnosis in 2013.
I'm so sorry your wife has this heartbreaking illness.

 

[Philbo]

Hi @Frank Streat

I was going to signpost the Rare Dementia Support site at @Louise7 mentioned - I've only just been made aware so was sadly too late in my case.

Best wishes
Phil

 

[Countryboy]

Disease Overview
What is Frontotemporal Degeneration (FTD)?
FTD is the most common form of dementia for people under age 60.

It represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. FTD is also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease.

How does FTD differ from Alzheimer’s disease?
1)
Different symptoms.
FTD brings a gradual, progressive decline in behavior, language or movement, with memory usually relatively preserved.
2)
It typically strikes younger.
Although age of onset ranges from 21 to 80, the majority of FTD cases occur between 45 and 64. Therefore, FTD has a substantially greater impact on work, family, and the economic burden faced by families than Alzheimer’s.
3)
It is less common and still far less known.
FTD’s estimated U.S. prevalence is around 60,000 cases (Knopman 2011, CurePSP), and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.
How does FTD progress?
The progression of symptoms – in behavior, language, and/or movement – varies by individual, but FTD brings an inevitable decline in functioning. The length of progression varies from 2 to over 20 years.

 

[Frank Streat]

Hi Frank Street prior to your Wife having an FTD diagnoses did she undergo any PET or SPECT brain scans the reason I’m asking I was diagnosed with Alzheimer’s age 56 then after the brain scan FTD age 60 and I plodding along for 21 years ok a few problems but that’s expected

Hi she did have a SPECT scan which combined with her FTD gene confirmed her diagnosis. She is suicidal suffering extreme anxiety with ruminations that she will be unable to speak. She is currently in a psychiatric hospital awaiting a care home placement.

 

[Frank Streat]

Hi Frank,
The FTD support forum has members from all over the world and is very supportive and informative.

Through that forum I found out that there are people who don't have full penetrance ie they have the gene but do not go on to develop the illness. You could Google 'penetrance in Ftd' to find out in detail about this.
So even if one of your sons were unfortunate enough to have the gene he may not develop the illness. I hope this may be of consolation to you as I remember the desolation I felt when I found out about that 50:50 statistic just after my husband's diagnosis in 2013.
I'm so sorry your wife has this heartbreaking illness.

Hi thanks so much for your advice and support

 

[Maggiejigs]

Dear Frank - so sorry to read your post. As above I would thoroughly recommend the Rare Dementia Support Organisation - please visit their website. They have a list of Support Group Meetings but sadly they are not in every County and of course none being held at the moment although they are arranging virtual meetings for those groups who wish it.

My local AS Carer Support Group helped me get through the difficult times following my husband’s diagnosis but there was nobody in the group dealing with FTD so with the help of a lady at the AS we managed to set up a small group here in West Kent. Sadly we only had two meetings before lockdown but with the help of Rare Dementia Org we are having a virtual meeting this week. So, please look at their website as you will find contact details and plenty of information.