Frontotemporal Dementia

[Tigersinthetent]

Has anyone had genetic testing for FTD?
When my dad was diagnosed the information was that they weren't sure there was a genetic link and it was v rare for it to be passed down if it was but I happened upon an article about Bruce Willis last night and a Dr casually mentioned a 50% chance of it being passed down if it was genetic and that there was a good chance of it being genetic. I went onto the NHS website and it's all different and yes what this Dr says is true.
I feel physically sick. I have had two children since my dad was diagnosed. I feel like I've potentially given them a ticking time bomb. I am in my 40s too so basically I could already be getting it. Maybe my forgetting words is really early FTD. All the things I really love doing, being active, reading books, playing with my kids, these are all things that I would lose really quickly having watched my dad's deterioration.

Hi @Tigersinthetent, I'm facing this dilemma at the moment. My mum has recently been diagnosed with FTD PPA. I haven't spoken to the doctor yet about whether there might be a genetic link. I didn't think there was anything like this in our family but my grandparent (mum's dad) had motor neurone disease, and there seems to be a link with a particularly faulty gene.

It's terrifying isn't it. I'm going to try and speak to the doctor this week. I understand there may be counselling before/after genetic testing like this.

I'm thinking it may be worth doing as, even if the news isn't great, you may then be able to get involved in clinical trials for treatments?

Anyway, suffice to say you're not alone - offering a hand hold.

Only 10-15% of ftd has that clear genetic link that you're talking. Even then, there's no guarantee that you inherited the gene (50/50 a chance). It's definitely worth being aware of, and maybe looking further into to see what you're dealing with but please dont panic as you're by no means a ticking time bomb

@BulbasaurusRex
Thank you for replying, so sorry about your mum. I hope you're getting some support with everything, there are some really kind people at charities who supported my mum when my dad was diagnosed.
I suppose it's just having it confirmed would be awful, not knowing is probably awful too. I've started writing a diary for my kids. I feel like I need to tell my sister about genetic testing too but she's just got married and planning a family and I'm at the v least going to hugely distress her and at worst blow up her life.

I think it's having gone from being told that there is v little evidence of any genetic link and no testing to now where there is a definite possibility. I worry about other relatives on my dad's side having had dementia too increasing risk.

Hi OP,
I have had these worries too, as my father is in the late stages of FTD. I also believe my grandmother (his mother) had some sort of dementia as she went weird in the last few years of her life - but nothing was ever diagnosed and the family didn't really discuss it.
That makes me more worried that it will be passed on. but I'm not sure I would want to know. But then I look at him and what he has been through the last few years and I think I would want to know so I could end my life before it comes to that.
A bit depressing really.

Hello, I’m in a similar position too- my dad has had a brain scan which shows moderately bad frontotemporal shrinkage (they gave another name for it), and combined with his behaviour over the last few years we’re expecting a diagnosis of behavioural variant FTD.

I’m also struggling with genetic testing question, and whether it’s better to know or not know.

He is almost 80 which I gather is much older than the typical diagnosis. I would say his behavioural issues started about 10 years ago but have only become really pronounced in the last 2-3.

I have read the same stats as @FortofPud which tbh aren’t bad (10-15% chance that Dad’s condition genetic, and then I’d have a 50% chance of inheriting if it were - so effectively a 5-7% chance if that’s how the stats work). However, that’s the main gene they have identified and the only one they can currently test for, but they think other genetic factors are at play.

Would be interested to hear if any of you do proceed with genetic counselling and testing.

I think I will but may not do so immediately.

Hello

How did all you guys get on here? It's been nearly a year since this post was written.
.how are you guys getting along dealing with FTD in a parent or other person?

Did anyone get genetic testing.

My mother doesn't have a diagnosis of dementia. She's in her early 70s. I have a list the length of my arm about her and it's all behavioural, mood, comprehension, spacial awareness stuff. I am suspecting the possibilty of dementia but GPs keep writing me off looking for a more typical textbook style of forgetfulness.

I recently learned that my grandmother (my mother's mother) likely had dementia. I asked my mother why was she in a nursing home and my mother wasn't able to tell me much except she was odd. I asked my mother 'if she ever had dementia. My mother excitedly told me that she did but it's wasn't bad because she never forgot things and anyone one of them.

This to me is a huge red flag for me. Because of FTD dementia memory can still hold up. But also ot shows my mother's level of understanding of dementia is nil. To think her mother likely had dementia and it was never talked about. My understanding as well for a lot of people long term memory remains.

Here I am now thinking my mother likely has dementia and it's behavioural. She really isn't behaving right most of the time now. Her mother likely had dementia of a behavioural type too. More than likely but it wasn't talked about.

I want to talk to my aunt who would be brilliant to talk to but I don't want my suspicions spread around the family as of it's gossip. Or I even considered applying to the death certificate department to see if dementia/FTD shows up on the death certificate for my grandmother.