Advice around stages of BV Frontal Temporal Dementia

[Jess2023]

Hello
I’m just appealing to anyone who has a loved one with Ftd and has insight into stages and symptoms, I’ve used the forum in the diagnosis stages for my husband and it was invaluable. He has BV FTD and is 53 diagnosed last Winter but symptomatic for a year before that. I’m beginning to notice more regular pacing, sundowning, changing clothing several times a day, eating more carbs and sweets and is verbally challenging when the food isn’t ready quick enough. No self awareness and personality has changed immeasurably Personal hygiene needs full prompting and wandering is happening, will come back with persuasion but this is occurring regularly. He is being treated with benzodiazepines due to moods and challenging behaviour. Sometimes feels like I’m a dealing with someone with hyperactivity and then can be appeased with watching a Disney movie. Speech is deteriorating and has some stock words / answers he relies on as he cannot use fluid language now. Only salvation is he sleeps at night but this can fluctuate recently with early mornings. Would you describe this as early to mid -I’m beginning to wonder as I feel he has a fast progression. I am about to look at respite due to this and managing a family and teenage children at home. Do people have any experience of this with BV FTD ? As in could respite make his world even more confusing ? Any help or words much appreciated, such a stressful journey !

 

[SeaSwallow]

Hello @Jess2023 it must be so hard to look after your husband as well as caring for a young family. I do not have any experience of BV FTD but have attached a link which you might find useful. Hopefully someone with experience will come along to advice you.

Frontotemporal Dementia (FTD)

Frontotemporal dementia (FTD) is one of the less common types of dementia. It is sometimes called Pick's disease or frontal lobe dementia. The first noticeable FTD symptoms are changes to personality and behaviour and/or difficulties with language.

www.alzheimers.org.uk

 

[Pacucho]

Hello Jess,
I've no personal experience of FTD. However, just in case you're not aware there is a specialist Rare Dementia Support group that specialise in FTD and other rare dementias. You can find them at the following link: https://www.raredementiasupport.org/.
Hope this helps,
Paco

 

[Jess2023]

Hello Jess,
I've no personal experience of FTD. However, just in case you're not aware there is a specialist Rare Dementia Support group that specialise in FTD and other rare dementias. You can find them at the following link: https://www.raredementiasupport.org/.
Hope this helps,
Paco

Thanks so much Paco I have joined that group recently so I may find more information there.

 

[Jess2023]

Hello @Jess2023 it must be so hard to look after your husband as well as caring for a young family. I do not have any experience of BV FTD but have attached a link which you might find useful. Hopefully someone with experience will come along to advice you.

Frontotemporal Dementia (FTD)

Frontotemporal dementia (FTD) is one of the less common types of dementia. It is sometimes called Pick's disease or frontal lobe dementia. The first noticeable FTD symptoms are changes to personality and behaviour and/or difficulties with language.

www.alzheimers.org.uk

Thank you @SeaSwallow

 

[Golda]

Hello
I’m just appealing to anyone who has a loved one with Ftd and has insight into stages and symptoms, I’ve used the forum in the diagnosis stages for my husband and it was invaluable. He has BV FTD and is 53 diagnosed last Winter but symptomatic for a year before that. I’m beginning to notice more regular pacing, sundowning, changing clothing several times a day, eating more carbs and sweets and is verbally challenging when the food isn’t ready quick enough. No self awareness and personality has changed immeasurably Personal hygiene needs full prompting and wandering is happening, will come back with persuasion but this is occurring regularly. He is being treated with benzodiazepines due to moods and challenging behaviour. Sometimes feels like I’m a dealing with someone with hyperactivity and then can be appeased with watching a Disney movie. Speech is deteriorating and has some stock words / answers he relies on as he cannot use fluid language now. Only salvation is he sleeps at night but this can fluctuate recently with early mornings. Would you describe this as early to mid -I’m beginning to wonder as I feel he has a fast progression. I am about to look at respite due to this and managing a family and teenage children at home. Do people have any experience of this with BV FTD ? As in could respite make his world even more confusing ? Any help or words much appreciated, such a stressful journey !

Hi Jess, your situation sounds really tough, and a lot of it sounds familiar - my dad has FTD and was diagnosed at a similar age, he is now 63 and in (I believe) later stages. I (and other family members) found it really hard to gage stages as sometimes he would/can seem to be more lucid or mobile. Moods and challenging behaviours are really hard, we especially found in the transitional period of him being aware of his changes very difficult. It takes a lot of love and patience, I wish I could give you a magic answer. Whatever stage you feel you are at, getting support and respite early and regularly when you can is definitely a good idea - it may help him to become familiar and comfortable with having assistance before it feels absolutely essential, and it will give you more chances to rest and process. Its a difficult journey, but you're not alone - keep talking about it, keep asking for help. Sending strength x

 

[Jess2023]

Hi Jess, your situation sounds really tough, and a lot of it sounds familiar - my dad has FTD and was diagnosed at a similar age, he is now 63 and in (I believe) later stages. I (and other family members) found it really hard to gage stages as sometimes he would/can seem to be more lucid or mobile. Moods and challenging behaviours are really hard, we especially found in the transitional period of him being aware of his changes very difficult. It takes a lot of love and patience, I wish I could give you a magic answer. Whatever stage you feel you are at, getting support and respite early and regularly when you can is definitely a good idea - it may help him to become familiar and comfortable with having assistance before it feels absolutely essential, and it will give you more chances to rest and process. Its a difficult journey, but you're not alone - keep talking about it, keep asking for help. Sending strength x

Thank you for responding I am so sorry about your dad, I identify with what you’re saying about the stages. I’ve made great strides in the last week to acknowledge I need help it’s too much for one person, I maybe need to have a plan for respite in coming months, but will acquire some care / support immediately to balance the situation we have as it’s definitely not sustainable with the challenges of FTD.

 

[Sarahkb]

Hi I could write your post myself. My husband is 51 diagnosed with ftd at 49 but symptomatic few years before. He is now in late stages presenting very similar to yours. He needs support with everything now. We have an 8 and 12 year old plus I work so horrendous to be honest but I’ve managed with support workers and respite in a residential home. This is very difficult for him as he gets very upset and spends his time asking to come home and gets angry. But cannot manage without it. It’s very hard and I just wanted to share so you know you are not alone x

 

[Jess2023]

Hi I could write your post myself. My husband is 51 diagnosed with ftd at 49 but symptomatic few years before. He is now in late stages presenting very similar to yours. He needs support with everything now. We have an 8 and 12 year old plus I work so horrendous to be honest but I’ve managed with support workers and respite in a residential home. This is very difficult for him as he gets very upset and spends his time asking to come home and gets angry. But cannot manage without it. It’s very hard and I just wanted to share so you know you are not alone x

Hi Sarahkb I’m so sorry you’re also on this path, sending you a big hug, I think sourcing help is key for us, thanks so much for sharing. Your children are much younger than mine, it’s unfair they have to experience this loss in their dad. Take care xx

 

[TeacherSue]

Hello
I’m just appealing to anyone who has a loved one with Ftd and has insight into stages and symptoms, I’ve used the forum in the diagnosis stages for my husband and it was invaluable. He has BV FTD and is 53 diagnosed last Winter but symptomatic for a year before that. I’m beginning to notice more regular pacing, sundowning, changing clothing several times a day, eating more carbs and sweets and is verbally challenging when the food isn’t ready quick enough. No self awareness and personality has changed immeasurably Personal hygiene needs full prompting and wandering is happening, will come back with persuasion but this is occurring regularly. He is being treated with benzodiazepines due to moods and challenging behaviour. Sometimes feels like I’m a dealing with someone with hyperactivity and then can be appeased with watching a Disney movie. Speech is deteriorating and has some stock words / answers he relies on as he cannot use fluid language now. Only salvation is he sleeps at night but this can fluctuate recently with early mornings. Would you describe this as early to mid -I’m beginning to wonder as I feel he has a fast progression. I am about to look at respite due to this and managing a family and teenage children at home. Do people have any experience of this with BV FTD ? As in could respite make his world even more confusing ? Any help or words much appreciated, such a stressful journey !

Hi I am in a similar position although my husband has primary progressive aphasia so he doesn't speak. My husband is 58 and was diagnosed 2 years ago but looking back there were symptoms for a couple of years before that. My husband goes to a day care centre now and has carers 2 hours before and after that to allow me to continue to work ( I am a teacher). His wandering was off the scale. I too am feeling that my husband's behaviours are progressing downhill at a rather fast pace now. I seem to be able to manage and then he exhibits new behaviours. He is having more toileting accidents now so is in incontinence pants during the week. I would describe this as mid stages of dementia. Last night I went to look around a care home as I need him to go somewhere for the week whilst I'm on a residential trip with my class. It was all rather depressing as the people in the home were a lot older than my husband and were just sitting there. I have a couple more places to look at then I will make a decision.
I also thought about how confusing all this change will be for him. But I think have a look at care homes and find one that you like. Once I've chosen one I'm going to go on a visit with my husband to show him around so that when he goes in he will at least have been there before. I guess I'll just have to cope with settling him back into home when that time comes.
At least when the time comes for him to go to a home permanently he will be familiar with the place.

 

[canary]

Hello @TeacherSue

My OH is in his mid 60s and goes into respite fairly regularly.

The atmosphere in a care home changes throughout the day. In the morning there are usually activities and everyone is at their best. Afternoons are often quiet with residents napping in their rooms, watching TV, or out with relatives. Evenings are the times when they either have early nights or are sundowning!

I realise that it may be difficult to visit at other times due to your work, but do be aware that if you visit in the evening the residents will be at their worst and you may end up with a false sense of what the home is like