Dad recently diagnosed with FTD at 56

[ellie65]

Hoping someone can help us

My Dad was diagnosed with FTD a few weeks ago. He is 56 and at the time of diagnosis the neurologist said he had probably had the condition for about 5 years.

Dad luckily took voluntary redundancy so work is no longer an issue, but that does mean that he's around the house by himself a lot now.

We are struggling. Mum works full time, and Dad's behaviour is unpredictable. One moment is fine, the next moment he has taken 3 days' worth of his medicine or 6 aspirin over the course of an hour because he can't remember taking them. He isn't confident driving anymore (DVLA are aware) and struggles to use the oven some days.

Mum has gone to the GP on two occasions, and both times she has been told to register on the Carers Network or "do some research online". There has been absolutely zero support for at home care past the point of diagnosis, and at 56 we are hoping there will be a good few years in him yet that we need to manage. If there's no support now, what will we do when it gets worse?

Has anyone got any advice? We are in Buckinghamshire.

Thanks so much in advance.

 

[Izzy]

Welcome to the forum @ellie65.

I’m so sorry to hear about your dad’s diagnosis - he is so young too. It must be really hard for all of you.

I wondered if this link would be of any help -

General Advice - Rare Dementia Support

We have gathered advice on a range of practical, legal and financial topics that may be of relevance to those affected by rare dementias. This information is gathered from resources that are freely available and this page is intended to signpost you to the relevant links only. Please visit the...

www.raredementiasupport.org

You might find some local support through this link -

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

I’m glad you’ve found this forum. You will find lots of support and understanding here.

 

[Sarasa]

Welcome to Dementia Talking Point @ellie65, I'm sorry that your dad's diagnosis and at such a young age has brought you here.
Have you looked on your local council website (both district and county) to see what might be available near you. I also think it would be a good idea to contact your local social services and ask for a needs assessment for your dad and a carer's assessment for you and your mum. Social services are very stretched so it might be a while till they get round to doing an assessment but at least you will be on their radar.

 

[Maceybethh]

Hi Ellie,

My names Macey and my dad has been diagnosed with FTD also , we received the diagnosis about a year and a half ago , and was told the same thing as your doctor said.
My dad lives on his own and I am his primary caregiver. He doesn't work, doesn't drive , but LOVES his bike . I completely understand and feel what you are going through, the anxiety, the worry and the uncertainty about the future.
I am from Northamptonshire , close to Buckingham, and first I got in contact with the young carers team in Northampton. I was assigned a support worker who regularly checks in, Sends me emails about support groups , and also answers any questions and provides guidance. I would strongly recommend getting in tough with them. I then contacted adult social workers and explained my dads condition, as well as age uk.
We have received home visits where dad has had assessments to determine what care can be put in place, and I now have a carer come once a day (as I’m only 21 and struggle in my own). Unfortunately it is a long process, but it’s a step on the right direction.
In regards to the future, I have no idea what it holds for dad. But I just take one day as it comes and treasure the moments I have every day. If u ever want to message me please feel welcome too ❤️ I would equally love to have someone who understands what it’s like to have a parent with ftd

 

[SeaSwallow]

Welcome to Talking Point @Maceybethh. I am sorry to read about your dad but so pleased that you have had good advice and help from your local authority. Keep posting if you need any help or advice.

 

[ellie65]

Welcome to the forum @ellie65.

I’m so sorry to hear about your dad’s diagnosis - he is so young too. It must be really hard for all of you.

I wondered if this link would be of any help -


You might find some local support through this link -


I’m glad you’ve found this forum. You will find lots of support and understanding here.

Thank you so much for the pointer Izzy - really pleased to be a part of the group and already feeling better about everything. I reached out to the Dementia Support Line from the Alzheimers Society and they've sent through some great resources too. I really appreciate your help

 

[ellie65]

Welcome to Dementia Talking Point @ellie65, I'm sorry that your dad's diagnosis and at such a young age has brought you here.
Have you looked on your local council website (both district and county) to see what might be available near you. I also think it would be a good idea to contact your local social services and ask for a needs assessment for your dad and a carer's assessment for you and your mum. Social services are very stretched so it might be a while till they get round to doing an assessment but at least you will be on their radar.

Thank you Sarasa - I have just filed for a Social Services Needs Assessment. Fingers crossed!

 

[ellie65]

Hi Ellie,

My names Macey and my dad has been diagnosed with FTD also , we received the diagnosis about a year and a half ago , and was told the same thing as your doctor said.
My dad lives on his own and I am his primary caregiver. He doesn't work, doesn't drive , but LOVES his bike . I completely understand and feel what you are going through, the anxiety, the worry and the uncertainty about the future.
I am from Northamptonshire , close to Buckingham, and first I got in contact with the young carers team in Northampton. I was assigned a support worker who regularly checks in, Sends me emails about support groups , and also answers any questions and provides guidance. I would strongly recommend getting in tough with them. I then contacted adult social workers and explained my dads condition, as well as age uk.
We have received home visits where dad has had assessments to determine what care can be put in place, and I now have a carer come once a day (as I’m only 21 and struggle in my own). Unfortunately it is a long process, but it’s a step on the right direction.
In regards to the future, I have no idea what it holds for dad. But I just take one day as it comes and treasure the moments I have every day. If u ever want to message me please feel welcome too ❤️ I would equally love to have someone who understands what it’s like to have a parent with ftd

Hi Macey - thanks for your message, it's so nice to hear from someone in the same boat. I will message you privately, I am 28 and I have siblings aged 25, 24, and 20 - so it would be amazing if we could all get together or at least chat when we need to
Hope you are ok xx

 

[jademarie007]

Hi, I’m sorry to hear about your dad. My names jade, I’m 25 and my mum has FTD, she was diagnosed about a year ago. I wondered if you or anyone else who is in the same boat has considered/had genetic testing? I am thinking about getting tested and wanted some advice/opinions on it. Thanks

 

[Izzy]

Welcome to the forum @jademarie007. I’m sorry to read about your mum’s diagnosis. You may find this link of interest -

Genetic testing for dementia

There are genetic tests that may be useful for people affected by dementia. Read more about genetic testing for dementia – what it involves, what it can help with and when it is covered on the NHS.

www.alzheimers.org.uk

 

[Gosling]

Hello @jademarie007 and welcome to Dementia Talking Point. You will find us a very friendly and supportive bunch of people who have lots of experience of the various aspect of dementia. So I am glad you have found us.
I am sorry to hear of your Mum's diagnosis, and it is obviously a further worry to you if you are thinking about genetic testing. I don't have any direct experience or knowledge to add, but I hope you find the link that @Izzy has already sent helpful.
Please do keep posting on here, even if you just want to let off a bit of steam. There is always understanding and a listening ear!

 

[ellie65]

Hi, I’m sorry to hear about your dad. My names jade, I’m 25 and my mum has FTD, she was diagnosed about a year ago. I wondered if you or anyone else who is in the same boat has considered/had genetic testing? I am thinking about getting tested and wanted some advice/opinions on it. Thanks

Hey Jade - thank you, and I’m sorry about your mum too. I haven’t had genetic testing yet, and although it’s obviously a very personal decision I think it is something I am going to do. I’d just prefer to know, especially because I hope to have kids one day - one way or the other! Plus maybe there’ll be clinical trials or something that I could be a part of if I know it’s coming… who knows. It’s something that I think would weigh less on me if I had a definitive future though.

 

[jademarie007]

Hey Jade - thank you, and I’m sorry about your mum too. I haven’t had genetic testing yet, and although it’s obviously a very personal decision I think it is something I am going to do. I’d just prefer to know, especially because I hope to have kids one day - one way or the other! Plus maybe there’ll be clinical trials or something that I could be a part of if I know it’s coming… who knows. It’s something that I think would weigh less on me if I had a definitive future though.

Yes, I think I’m going to go ahead with the genetic testing too. It would make me feel better to know if i do have the gene.

 

[canary]

Hello @jademarie007 and @ellie65

I am so sorry to hear about your parents diagnoses. Do either of them have a genetic reason for their FTD, or are there other close family members who also have FTD? Do not assume that they will automatically have a genetic reason for their FTD - most cases of FTD do not, in fact, have a genetic disorder causing this, only a very few and usually there is a strong family history of FTD (not other forms of dementia) in parents siblings etc

 

[ellie65]

Hello @jademarie007 and @ellie65

I am so sorry to hear about your parents diagnoses. Do either of them have a genetic reason for their FTD, or are there other close family members who also have FTD? Do not assume that they will automatically have a genetic reason for their FTD - most cases of FTD do not, in fact, have a genetic disorder causing this, only a very few and usually there is a strong family history of FTD (not other forms of dementia) in parents siblings etc

Thanks for this @canary - I don’t know if dads is genetic. He is either very in denial about his diagnosis or doesn’t understand it fully anyway, so I’m hesitant to bring it up and ask. However at the time of his diagnosis my mum did say she’d told us in case we wanted to get tested because the neurologist said it was important to let us know. So I’m not sure if that is a yes or not basically 😂