Frontotemporal Dementia

[jojo144]

Hi everyone. I am new to this site but it was recommended to me as a great source of support. My mum (she is 65 and I am 31) has been diagnosed with FT dementia and her decline has been frightening. In under a year she has gone from being at home with me functioning (with support) to having a total mental breakdown and being sectioned. She is now in a residential care home and is so unhappy. She has no insight into her illness and thinks she would be fine living at home. No one involved in her care thinks this is an option due to her anxiety, memory loss and general confusion. Every time I see her she begs me to take her home then gets angry and says I have abandoned her. The stress of dealing with it all is getting to me and I wondered if anyone has experienced this or something similar and can offer any advice of what I can do to help my mum settle into the care home (this is probably wishful thinking) and support her. Thanks.

Sorry to hear you're having such a difficult time. Sometimes it gets busier here in the evenings; hopefully someone will see it who is able to offer advice .

Thanks for the reply. Hoping that someone has some advice for me so will keep an eye out.

Hello. My mum had FTD. She was at home for far too long with my Dad caring for her and eventually sectioned and then into a care home. She died last year, but of heart failure not the FTD. It was a relief to be honest because her quality of life was awful & she was miserable.

We were very similar ages to you and your Mum. She was diagnosed when DC1 was a toddler, and I had DC2 just before she was sectioned. It is so hard to have small DC at the same time, and it will wear you down very quickly. The thing I found most helpful was to constantly remind myself that my children needed me to be sane, so I was careful about frequency of visits, put them first and sought support from DH (I.e..got him to come with me if I was finding it too much, he's a calming presence in a crisis). My Dad, brother and I were supportive of each other.

If you're worried about her settling then do speak with the manager of the care home and consider whether a referral to the older people CMHT is warranted. There is also a Pick's disease support group that my Dad joined. I'm not sure if they're national but I think they might be. I was lucky because I work in a related field in the NHS so this helped me negotiate the system. Is your mum CHC funded?

Oliver James has a book 'contented dementia'. Much more geared to Alzheimer's but parts might be useful you. Researchers think that some types of FTD can be very rapidly progressing so it might be that this is the case for your Mum. If you are academically inclined John Hodges is the leading expert and has a few books on the subject.

You have my sympathies. It's a fucking hideous disease and is poorly understood because it's rare.

Hi Kitty

Fucking hideous is exactly how I would describe this. The doctors have said she has rapidly progressing FTD - in the space of 10 months she went from being at home with me (undiagnosed) to being sectioned and now in a care home. She hates it and is so sad. I just sat with her for an hour as she cried and begged to come home. I work full time and have no way of caring for her at home.

She is under S.117 of the mental health act so her care is being paid for by the council. I am doing daily battle with them to get her a higher level of support as she is suffering with hearing voices, anxiety and fear. She broke out of the care home over christmas. But she's safe there now they are watching over her 24/7.

I'll look up the books/authors you've mentioned as you're so right to say that it's a poorly understood illness. The older adults mental health team and her doctors don't know enough about it and they are meant to be the experts!

One day at a time. I'm so sorry for your loss although I do fully understand the relief it must bring. My mum is so unhappy and declining so rapidly that if they can't improve her quality of life (she has none at the moment) I don't want her to live like this for years and years :-(

Thanks for your message x

That does sound a quick progression. My mum was much slower but a stroke & heart disease intervened. If your mum is social care funded I'm surprised they haven't asked about CHC. This is Continuing Healthcare funding, so means the bill gets passed to health. I don't know whether this would make a difference to your current concerns but it might do if the home is putting in a level of support that is beyond what they're actually resourced to do. This is often the case when people challenge, sadly.

Sounds like you've been dealing with a lot if she was at home with you. My Dad looked 20 years older after my mum was sectioned. I've found the support group website. I've forgotten how to link on the iPad but you can copy & paste into your browser:

www.ftdsg.org/Regional_contacts/

my mum used to ask to go home, or tell me she was going. I used to just reflect it back to her " you want to go home", and didn't get into a debate about why she couldn't. She was very aware of where she was so you couldn't go along with it like you might for someone with Alzheimer's (where you say "ok, let's go", then get your coats, go for a walk and then come back for a cup of tea - you might be able to do this once her short term memory is shot).

It is very tough, but if this is any comfort my mum died last April, and since then the memories of her with FTD have faded and I think about her much more as she really was. It is hard to remember the real person when they're in the grip of this.
One other thing is that I did a photo life story book for my mum when she was in care, partly for her orientation, and to use as a talking point with staff, but also for me to help me hold on to who she really was.

Best of luck with everything. I'll check back here again in the next day or so.

I am not really able to help as I am not nearly as far along this road as you, but wanted to offer some sympathy. My mum was diagnosed with FTD 3 years ago, at the age of 65 but so far the progression seems to be steady. She is still living at home with my dad caring for her, but can do a lot independently even though she does get extremely confused.

It sounds as though you have been through a terrible time, and also that you are doing an amazing job. I do wish you all the very best and hope that you do manage to get some more support.

Firstly Kitty thank you for your message which I have only just seen. Not very good at keeping up with this!

I have found that support group and I am going to their annual seminar next month in a bid to learn more. They have been very kind so far. Two people yesterday commented on how tired and stressed I look so I think I can admit that I look a lot older now!

I'm currently doing battle with the CCG for further funding. She needs one to one care to stimulate and support her. As she is only 65 she should be helped to do things suitable to her age range. So a trip to the shops or a cup of tea in Costa or something. But at the moment she is just stuck in a care home with not enough support. That alone is killing me.

Her short term memory is on the way out now so the tips I've had from people dealing with a loved one who has Alzheimer's will soon become relevant. But at the moment I just do as you say, agree with her and try to change the subject. There is no point arguing.

I am in this weird limbo of grieving for her when she hasn't died. Everyone says remember who she was and all I can think is she hates me (she tells me this a lot at the moment as she blames me for being in the care home). It does comfort me to think that when she dies I might be able to go back to remembering my mum as she was.

Lapsang hello and thank you for your message. This road has been approx. 8 years for me but until recently I didn't know what exactly was wrong with her. My mum's progression was steady until Feb 2014 when she effectively become unable to cope any longer and just completely dropped off. She's now got no capacity and is slipping away on a daily basis. According to her new consultant this is quite common with FTD especially in younger people (65 is young on this scale).

Sending you and your family lots of love as I know what you are going through xx

Absolutely 65 is very young I would question the diagnosis and ask for other neurological blood tests to be carried out to rule out exposure to other factors such as diet related. How is her balance?

FTD happens to people aged 40-65 so it's not young on that scale. She's had assessments by 5 doctors or consultants and every blood test/scan/test available. The SPECT and MRI scans show the damage to her frontal lobes and her symptoms support this. They won't be sure until they do an autopsy but sadly I don't think they have her diagnosis wrong.

Hi I know this is an very old post but I am caring for my dad who is 64 and Waiting a SPECT scan. we have been given a preliminary diagnosis of early onset dementia but consulatamt wants to rule of FTD. Can I ask how your journey has gone OP with your mum? I'm so worried about the rate of decline for my dad as he lives alone.

Hi @Melabells I'm not the OP but my mum also suffers from a variant of FTD. She was formally diagnosed in 2017, following an initial broad diagnosis of dementia the year before, aged 65. I'm sorry to say things have been very difficult, progression was swift and my mum is in a care home and requires 24 hour care. She is nearing the end of her life now. I'm sure you will be very worried. If I can offer any advice please make sure you have LPOA (both financial and health). I don't, and it's caused a world of problems. Mum's insight into her condition disappeared very quickly so you may only have a small window to sort this out. And please ask for and accept as much help as you can. We didn't, for various reasons, and it almost destroyed our family . I'm really very sorry about your dad.

@Candleabra thanks so much for reaching out. Sorry to hear your mum. Thankfully my sister and I sorted POa back in October so it is being registered now. Dad has a scan date for 14th January. He is very much in denial but I feel his paranoia and stress levels are climbing again. He had a bad week last week and barely ate, but this weeks seems better although Christmas is causing frustration for him. He is already a shadow of his former self 😞

Does your dad have problems with speech? That was one of the first real problems with mum. I seem to remember the diagnosis took a while, lots of tests, both medical scans etc and verbal tests. It was a struggle for mum to do the tests due to her language issues. She is completely non verbal now.

I feel for you so much, as it's a difficult journey. I imagine a million times worse at the moment due to covid and lack of support.