Looking for advice/stages of FTD

KAdad

New member
Jun 18, 2019
3
Hi All,

I’m new to this so please bear with me.
My dad is 65 and was diagnosed 2 years ago with FTD. Over the last year, he’s had trouble recalling correct words, sleeps at least 14 hours a day and has started to have hallucinations. He lives with my mum who is his main carer, but also works 1 or 2 days a week. My sister and I try as much as we can to support them E.g., take dad out/have over for dinner etc to give mum some time to herself. Mum is very defensive when we offer help, and looks so worn down. I don’t know how else I can help. I’m so worried about what to expect throughout the progression and how long I have left with dad. Has anyone been in this situation that can maybe help me understand what she’s going through/what else I can do to help and any experiences with what will happen? Thank you in advance xx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,498
Yorkshire
hello @KAdad
a warm welcome to DTP
it's good that you are so interested and supportive of your mum in caring for your dad
sadly, it's often the case that a mother doesn't want to 'bother' her children, feeling that she 'should' be able to cope .. so your mum is fortunate that you are looking out for them both

these pages on the main AS site may have some useful information
https://www.alzheimers.org.uk/categories/types/frontotemporal-dementia-ftd

as may this site
http://www.raredementiasupport.org

to help out your mum maybe you can look into such things as Lasting Powers of Attorney and Attendance Allowance
and let her know that your dad has a right to a care needs assessment by their Local Authotity Adult Services, and she has a right to a carer's assessment ... from which a care package will be suggested, maybe some day care, home care visits etc

maybe she could join DTP too?

now you've found us, keep posting; it helps to share experiences
 

canary

Registered User
Feb 25, 2014
11,342
South coast
Hello @KAdad and welcome to DTP

Everyone with dementia follows their own unique path, and this is true of FTD too. Im afraid it is impossible to know how long someone has got - there have been (and still are) people on this forum who have been diagnosed with FTD many, many tears previously (some may post on this thread).

In addition to the links that Shedrech has given you might find these helpful too. They are American sites, but give a good explanation and description of the condition
https://www.theaftd.org/
https://memory.ucsf.edu/dementia/ftd
 

KAdad

New member
Jun 18, 2019
3
Thank you for reply and the information. Luckily we’ve sorted all that already and to start the process as soon as he was diagnosed was a weight off our shoulders. I’ve read up on FTD but as we all know it’s progression isn’t well known.

Explaining it to my 10 year old son was hard. But he now sort of understands why grandad does certain things which are strange. I was recommended a video for my son to watch, made for children by someone local to us. I will add the link tomorrow as it really helped me explain it. Xx
 

KAdad

New member
Jun 18, 2019
3
Hello @KAdad and welcome to DTP

Everyone with dementia follows their own unique path, and this is true of FTD too. Im afraid it is impossible to know how long someone has got - there have been (and still are) people on this forum who have been diagnosed with FTD many, many tears previously (some may post on this thread).

In addition to the links that Shedrech has given you might find these helpful too. They are American sites, but give a good explanation and description of the condition
Thank you
 

Countryboy

Registered User
Mar 17, 2005
1,433
Cornwall
hi if there are different stages of Frontal-temporal-dementia I have never experienced it , and I was diagnosed at first with Alzheimer’s in Nov 1999 so only few months short of twenty years my diagnose was changed to FTD in 2003 after PET & SPECT brain scans but as I said I haven’t gone through any stages , my scans showed damage loss of volume to the frontal lobes it not repairable so I assume it exactly the same as it was 20 years ago, unfortunately its classed medically as Dementia maybe my FTD shouldn’t recorded as dementia apart from other unrelated medical issues I'm fine
 

Abbey82

Registered User
Jun 12, 2018
78
Hi All,

I’m new to this so please bear with me.
My dad is 65 and was diagnosed 2 years ago with FTD. Over the last year, he’s had trouble recalling correct words, sleeps at least 14 hours a day and has started to have hallucinations. He lives with my mum who is his main carer, but also works 1 or 2 days a week. My sister and I try as much as we can to support them E.g., take dad out/have over for dinner etc to give mum some time to herself. Mum is very defensive when we offer help, and looks so worn down. I don’t know how else I can help. I’m so worried about what to expect throughout the progression and how long I have left with dad. Has anyone been in this situation that can maybe help me understand what she’s going through/what else I can do to help and any experiences with what will happen? Thank you in advance xx
Hi KAdad,

My Dad is just 60 and he was formally diagnosed last July with FTD. Unfortunately his has progressed very rapidly, we believe he has had it about 2.5 years, but the last 12 months have been more of a steep decline.

We decided last year that my Mum and Dad were to move in with my husband and I, we had them a small extension built on the back of our house and this made it easier to share the care. M mum was very 'closed' about it all but realised that she needed to hand over to others. We share the care and we try and take turns with helping showering, taking him out for dinner, entertaining him and bed time routine. We really had to push Mum to say, right let us help and take over, that was key, otherwise your Mum will burn out and it will do no good for her or your Dad. Unfortunately for us, my Dad was sectioned last week as he had a severe decline over a couple of weeks and his Meds are no longer affected, we are waiting to see what else they can offer up to try, again my Dad is hyper sensitive to medication so this makes it worse also.

I would say, you and your family know your Dad best, when any authorities get involved, GP's, nurses, hospital, social workers etc make sure your voice is heard, we took my Dad off Doneprozil and Memantine as they made him more aggressive, much to the specialists disgust until we showed them what he was like and they agreed. Be sure to look for little changes which may bee progression or may be to do with medication, keep a diary/book and note it all down.

We do have a fantastic WAD (working age dementia) group that we go to once a week, with like minded people and PWD, these have now become like family to us and its great to have someone else to talk to.

As above, feel free to message me if I can help with any more questions. We've been through a lot in a short space of time, by no means experts but we have had to learn quickly.

Adele