Frontotemporal dementia. How to get a diagnosis

[Bonnynorton1]

My dad's behaviour has deteriorated a lot in the last few months. The usual kind of things eg. not washing or dressing, not cleaning or cooking or being able to manage his finances. However, he also has developed a compulsive eating habit which means he eats constantly day and night and wanders out of the house to get more food when he's finished everything in the house sometimes in the night. He has also lost inhibitions and will walk around inside and outside the house with only underpants on. He also often talks about the sexual pleasure he gets from carers washing him. The problem is he is still very articulate and answers the basic memory questions (date of birth, prime minister etc) perfectly ok. Not only that but he tells medical professionals that he is managing by himself splendidly. The result is that his GP, community nurse and social worker don't think he has dementia. From day to day his behaviour is clearly very concerning and unsafe and I really want to get him a diagnosis. Tbh partly to get him a place in residential care, which is being witheld at the moment because of 'lack of medical need'.

He has an appointment at the memory clinic next week. I am really worried he will present as being ok and this will make his situation even less urgent. From what I have read it seems very likely he has FTD and perhaps the medical professionals he has seen so far don't really know what it entails, they are more used to alzheimer's symptoms. Does anybody have experience of getting a diagnosis for FTD. Does anyone have tips for getting this done asap?

[sourpatchkid]

No personal experience but the memory clinic should be staffed by psychologists with lots of experience - can you attend the assessment with him and express your concerns?

[Bonnynorton1]

Unfortunately psychologists can't observe day to day behaviour. I can attend but again it will be my word against his!

[CMOTDibbler]

My mum has frontotemporal - though not the behavioral type - and at diagnosis she could still do pretty well on standard memory tests - knew her dob etc, and it had been very hard to get her GP to refer her. However they talked to me about her issues, did other tests, and she had a massive language deficit, lost all her planning skills and more specific deficits. She also had very obvious problems on her CT scan.
The memory clinic were brilliant, and obviously very used to people saying that they were fine

[Bonnynorton1]

Thanks so much. It's great to hear from someone with experience of this. Am I right in thinking it's only a scan that can confirm it for certain?

[LadyinCement]

Mil's behaviour was beyond eccentric - it was weird, shocking, outrageous... but she could sort of "sober up" when faced with tests and passed with flying colours. A brain scan revealed giant back patches where brain function had been lost. The brain is an extraordinary thing.

[CMOTDibbler]

I think its a combination of things tbh - obviously having a very abnormal scan (and with no tumours etc showing) and a very bad score on MOKKA went together along with my history, and the way she behaved when she was there all went together for her diagnosis

[Bonnynorton1]

That's interesting ladyincement. I think I should make sure my dad gets a scan. I'm guessing this is avoided as long as possible because of cost?

Did the scan make a difference to how her care need was perceived?

[LadyinCement]

Mil was sent for a scan when her carers reported her to the GP after she screamed and verbally abused them. Up to that point fil had done a lot of covering for her, and it was only when bil intervened that things started moving - e.g the carers, even if they only lasted one session!

After the scan revealed how extensive her loss of brain function was she was hospitalised and then we had to find a suitable care home (which pil had to pay for, as it was judged to be dementia and not Alzheimer's).

[ChristmasLightLover]

Bonny, how is your Dad? Did you get the scan? The consultant talks about my Dad having frontal lobe dementia but hasn't confirmed it yet. I don't know why. But anyway, how is your Dad? Hope he - and you - are ok.

[CDAlady]

Oh thanks for remembering me Christmastree ! (I’m Bonnynorton1 but NC) Sorry I haven’t been checking this thread.

So, my dad passed onto the second stage of diagnosis. The nurse called him (rather than me) to make the appointment and of course he said no. Because one of the main symptoms of FTD is lack of insight, obviously. I was furious and upset. I have been living with his behaviour for years and years and yet my assessment of his situation is judged to be exaggerated 😡

I begged and pleaded for the memory nurse to come. She was clearly quite irritated with me and lectured me about my dad’s rights etc etc. Anyway, she came. We went through the whole memory charade again and yet again he appeared to be only mildly impaired. So, finally I burst into tears as she was about to finish and blurted everything out about his weird behaviour going back over years. At first I could tell she didn’t believe me or that I was exaggerating. For example, she wanted actual evidence he had eaten 15 pots of jam in a week. Thankfully and thank god though my dad was very impassive during my outburst and when she asked him if the things I was saying we’re true he said, yes of course without any sense he should be embarrassed about them. Finally I think she got the picture.

She said a consultant would be in touch with me later this week. As I took her to the door she whispered that it did look likely to be FTD. I have been reading and reading about FTD. As far as I can work out the diagnosis is only ever probably/possibly FTD until autopsy?

Do you know about //www.ftdsg.org? A support group for families /carers of people with FTD? It’s very well developed. I had immediate replies to emails to organizers. They have s telephone support service, info pack and regular meetings in different areas. I am going to one in London this Friday. It looks like the group is very well funded by a drug company, perhaps they like having a data base of people they can contact for research. Finding a cure would be hitting the jackpot especially as relatives have a 50 percent likelihood of developing it and hence ideal research/trial participants. Did you know that about heritability? Shit isn’t it?

[MummyBearBoo]

If it is the behavioural not memory loss kind as it seems to be my dad has this and the MRI, CAT scan and lumber puncture just indicated a thinning of the frontal lobe of the brain but they mainly diagnosed him thought observation after keeping him in hospital for a week he has a PET scan coming up too but the consultant neurologist has said he is as certain as he can be that he has FTD! On the cognitive test he did fine and he's not really losing his memory but it is difficult to get a diagnosis if he not in hospital- our GP called an ambulance for my dad coz she's known him a while and knew he wasn't himself and that's how he got all the tests!

[MereDintofPandiculation]

My experience is that your testimony becomes magically of more weight if you can provide dates. Start keeping a diary if you haven’t already.