Fronto temporal dementia

Rosa_0153

Registered User
Feb 23, 2016
10
0
Hello!

I am new to the forum. My husband has recently been diagnosed with fronto temporal dementia (FTD), the behavioural variant. He is 65, I am 63. He has been exhibiting symptoms for about 4 - 5 years when I look back on it. I know a few people with other dementias, but nobody with FTD. I am finding it incredibly hard to deal with his 'Jekyll and Hyde-like' behaviour. If anyone out there in similar circumstances has any advice on how to cope, or strategies to deal with his demands, it would be greatly appreciated.

Rosa
 

Rich PCA Carer

Registered User
Aug 31, 2015
107
0
North Gloucestershire, UK
UCL has a Dementia Research Centre which provides support for the rarer dementias which includes FTD. Google "UCL FTD support" and you should find it. This links through to their regional support groups - there may be one near you. There is also a Closed Facebook Group for FTD support called "Frontotemporal Dementias info and support" which you could apply to enter.

I would expect that there are some people in your area with FTD, it's not that rare. Your local memory clinic may even run a support group, ours does.

All the very best for as smooth a journey as is possible.


Sent from my iPad using Talking Point
 

Linken

Registered User
Nov 3, 2013
11
0
Croydon
It is lonely

My husband also has FTD and everybody thinks it is Alzheimer's and assume he has memory problems. But FTD is different. I found reading the book "What if it's not Alzheimer's?" by Lisa Radin and Gary Radin very helpful. I got it from Amazon. It is American but has a lot of relevant detail - both practical and theoretical information - just ignore the American bits. Also the support group at UCL already mentioned is great. They have an annual seminar coming up on 10 March.

Any particular issues you would like ideas about?

Sorry you were both so young when this hit you. My husband was nearly 70 when he was diagnosed. I wish you well.

Linken
 

Pollyanna153

Registered User
Jul 15, 2015
41
0
Hello!

I am new to the forum. My husband has recently been diagnosed with fronto temporal dementia (FTD), the behavioural variant. He is 65, I am 63. He has been exhibiting symptoms for about 4 - 5 years when I look back on it. I know a few people with other dementias, but nobody with FTD. I am finding it incredibly hard to deal with his 'Jekyll and Hyde-like' behaviour. If anyone out there in similar circumstances has any advice on how to cope, or strategies to deal with his demands, it would be greatly appreciated.

Rosa
My husband has got ftd diagnosed about 16 month ago but it been there for a long time just didn't realise it
It is strange he is on sertraline so he is on a calm level
He has had problems with his speech recently like his voice going and couldn't get the words out
He still has some problems. It not as bad it is like different things happen like in stages then He goes alright with that thing then maybe something else
I find that i feel very lonely and isolated and conversation are not really on the agenda
I do try
I been going through a low phase just now but i have been told to do things for myself ie go out for a few hours if i can and not to feel guilty (i think the feelings of guilt we have are the worst part of it )
I am being told in no uncertain terms that it is not my fault and to look after myself more
After tea he tends to go in his bedroom to watch his tele it used to upset me as i left in my own but i have got to get used to it
I have moved into my own bedroom t try and get some sleep
Each day now he sees the houses across from us being rebuilt new chimneys etc
He has hallucinations but i think it is something where there is no consistency
I just go along with things as much as possible
I really do feel for you
A lady i speak to from the Alzheimer's society refers to it as strange

Big hugs
 

Rosa_0153

Registered User
Feb 23, 2016
10
0
Ftd

UCL has a Dementia Research Centre which provides support for the rarer dementias which includes FTD. Google "UCL FTD support" and you should find it. This links through to their regional support groups - there may be one near you. There is also a Closed Facebook Group for FTD support called "Frontotemporal Dementias info and support" which you could apply to enter.

I would expect that there are some people in your area with FTD, it's not that rare. Your local memory clinic may even run a support group, ours does.

All the very best for as smooth a journey as is possible.


Sent from my iPad using Talking Point

Hello

I have been very remiss and not been on the forum for some time. My daughter uses the site you mention and I didn't want to go on it as I am trying to respect her privacy in relation to this. However, I do ask her questions to post on my behalf and I've found it very helpful.

Thank you
 

Rosa_0153

Registered User
Feb 23, 2016
10
0
My husband also has FTD and everybody thinks it is Alzheimer's and assume he has memory problems. But FTD is different. I found reading the book "What if it's not Alzheimer's?" by Lisa Radin and Gary Radin very helpful. I got it from Amazon. It is American but has a lot of relevant detail - both practical and theoretical information - just ignore the American bits. Also the support group at UCL already mentioned is great. They have an annual seminar coming up on 10 March.

Any particular issues you would like ideas about?

Sorry you were both so young when this hit you. My husband was nearly 70 when he was diagnosed. I wish you well.

Linken
I've read the book and found it helpful. The main thing I have difficulty with is attempting to manage his behaviour. For example, he used to have a bank card but started drawing out hundreds of pounds and also lost several cards and his wallet on numerous occasions. I didn't renew his card and started to give him pocket money to try and limit his spending but he can't accept this as he doesn't think there's anything wrong with him and keeps demanding a new card. He won't be fobbed off and is like a 'dog with a bone'. It's so wearing, I'm just at my wit's end on how to deal with these issues (one of many!).
 

Rosa_0153

Registered User
Feb 23, 2016
10
0
My husband has got ftd diagnosed about 16 month ago but it been there for a long time just didn't realise it
It is strange he is on sertraline so he is on a calm level
He has had problems with his speech recently like his voice going and couldn't get the words out
He still has some problems. It not as bad it is like different things happen like in stages then He goes alright with that thing then maybe something else
I find that i feel very lonely and isolated and conversation are not really on the agenda
I do try
I been going through a low phase just now but i have been told to do things for myself ie go out for a few hours if i can and not to feel guilty (i think the feelings of guilt we have are the worst part of it )
I am being told in no uncertain terms that it is not my fault and to look after myself more
After tea he tends to go in his bedroom to watch his tele it used to upset me as i left in my own but i have got to get used to it

I have moved into my own bedroom t try and get some sleep
Each day now he sees the houses across from us being rebuilt new chimneys etc
He has hallucinations but i think it is something where there is no consistency
I just go along with things as much as possible
I really do feel for you
A lady i speak to from the Alzheimer's society refers to it as strange

Big hugs

My husband also started to isolate himself from family life. He started to watch telly in a different room and gradually withdrew permanently there. Even when my daughters visited with grandchildren, he wouldn't come out of his room. He is only on anti-depressants at the moment, but I wish there was something to control his extreme behaviour. Perhaps this is something I should mention to his CPN. I do manage to go to a couple of classes a week and find it invaluable to have this time for myself. You shouldn't feel guilty, sounds like you are doing all you can. I feel a person with FTD is totally self-absorbed and it is the illness that makes them like it. They can't help it, but we are also only human, not super human and we can only do what we can do. I appreciate your Big hugs, Big hugs in return.
 

Rosa_0153

Registered User
Feb 23, 2016
10
0
UCL has a Dementia Research Centre which provides support for the rarer dementias which includes FTD. Google "UCL FTD support" and you should find it. This links through to their regional support groups - there may be one near you. There is also a Closed Facebook Group for FTD support called "Frontotemporal Dementias info and support" which you could apply to enter.

I would expect that there are some people in your area with FTD, it's not that rare. Your local memory clinic may even run a support group, ours does.

All the very best for as smooth a journey as is possible.


Sent from my iPad using Talking Point

Thanks for the info. I will check out things locally. Thanks also for the good wishes
 

teetoe

Registered User
Mar 10, 2016
78
0
NSW, Australia
I have read loads. There just seems to be very little about managing difficult, persistent behaviour.
I find it hard too, as my OH seems fine with others and they don't know the extent of his condition. I didn't know he had FTD, I thought they said it was vascular dementia in the end (at first they thought it was Alzheimers), but have just found out it is in his notes as FTD. It does explain a lot. It may be mixed as his memory is very bad.
 

Ellaroo

Registered User
Nov 16, 2015
161
0
Liverpool
My. Mum who aged 90 who lives with me has both alzheimers and vascular dementia.
She had a brain scan 3 yrs ago and there was shrinkage , damage in her frontal temporal area.
Although diagnosed with dementia 7 yrs ago, not been right for 10 yrs can still be grateful for care recieved from me and my daughter.

She has been put of hospital after 13 wk spell.... After late night fall, no damage but BP was low, kept getting UTIs and i foolishly asked for care calling each day.
Kept getting v young inexperienced girls, many different faces and mum is so complex that after showing each of them what to do etc it was more bother than worth.
Final straw was last wk when one carer brough commode into living room ? Laziness not walking with mum and when she became v. Agitated , throwing items off table inc zimmer...... She started saying for ****s sake and other cursing. I didnt witness it but my daughter did. So have made xomplint and no care attending.
Mum is so difficult and it is always her terms.
Was having lots of problems wirh hitting out at staff, nurses , when in hospital, making some of them cry.... Arms bleeeding with scratching, digging nails in and punching...
FTD is off the scale , compared to other dementias .
Psychiatriast in hospital didnt recommend sedatin as would impair cognition and increase risk of falls.
Most of time mum is pleasant , its re personal care , using toilet, pulling up,underwear and sitting on toilet... FIGHTING WITH YOU IF YOU TRY TO CORRECT ..... GUIDE ...
NOT wanting to get up, from chair to go to bed ......
I now put mum to bed from 8 pm , depending when she wants toilet as commode is by bed , otherwise have had 3.30 am conversations , getting nowhere.
Keith lemon could have another script writer asmum prone to making sexual comments in public and laughing excessively.
Sw is trying to obtain CHC re specialist carers and more respite .
Another reason care didnt work was mum isnt flexible and does things when she wants to... Most visits , esp you ger girls , just wrote refused assistance in care file .....
I have had to phone ambulance twice when mum refused to go to bed and carers couldnt persuade her in 30 mins slot..... OT wont give me a hoist for emergency use .....
Sorry , not much advise but understand stress you must be under.
I think its like living with domestic violence and sometimes blame myself when mum kicks off as not being one step ahead. Its not all bad but at the moment you are in the Zone its hell and such a relief when you come out of it and mum becomes pleasant.
By sharing info we can tackle dementia in a positve way , big hugs xx
 

MAMMYGRANNY

Registered User
Jan 26, 2016
69
0
Rosa,
I a so sorry you are going through this. My husband also was DX with it at 65. A group I found helpful with tips for managing different stages and behaviours is FTD support forum. Many helpful people - mostly in USA but also quite a few from UK. Doesn't matter where people are from though the behaviour they are dealing with is very familiar. Hope you can find help there.
Mammygranny
 

teetoe

Registered User
Mar 10, 2016
78
0
NSW, Australia
I've read the book and found it helpful. The main thing I have difficulty with is attempting to manage his behaviour. For example, he used to have a bank card but started drawing out hundreds of pounds and also lost several cards and his wallet on numerous occasions. I didn't renew his card and started to give him pocket money to try and limit his spending but he can't accept this as he doesn't think there's anything wrong with him and keeps demanding a new card. He won't be fobbed off and is like a 'dog with a bone'. It's so wearing, I'm just at my wit's end on how to deal with these issues (one of many!).
Gosh Rosa in so many ways it is the same with my OH - I call it "stroppy" behaviour. I will see if I can get that book too. Thanks.
 

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