Diagnosed with Frontal lobe dementia

jenniferjean

Registered User
Apr 2, 2016
660
Basingstoke, Hampshire
@jenniferjean - there is a variant of Alzheimers that is variously known as behaviour variant Alz (bvAlz), frontal lobe variant, atypical Alzheimers and probably a few other things. Basically it is Alzheimers that instead of causing memory problems as the first symptoms and following the usual path of Alzheimers, starts in the frontal lobes and causes very, very similar symptoms to FTD. It can sometimes be extremely difficult to tell them apart and this is why some people have the diagnosis of exactly which dementia it is, changed over time. This is what has happened with OH - he had a diagnosis of FTD to start with, which the neurologists have decided is not what he has - although they realise that he has something and he has all the symptoms of FTD. Its just that the scans do not support this diagnosis and he has a lot of physical symptoms too, which do not seem to fit in any little box.
My husband's biggest problem is the memory, his short-term memory is virtually zero. As to scans he had one a few years ago, but only the one. This was when we lived in Wales and he attended a memory clinic once a year. Since we moved to England the doctor said that she didn't see the point in him attending the memory clinic now that he had his diagnosis. He has been seeing the doctor just once a year. This doctor has now left the practice. To tell the truth I feel sometimes that I am just side-lined and having to get on with it.
Someone else on here mentioned about "their PWD's latest scan". Should he be having more than just that one he had previously? I don't know.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,497
Thank you D of D. That post was well put and makes me feel less queasy about this behaviour...do women have similar problems or is generally a male thing? With my PWD it’s mostly on the internet and only occasionally directed at me, although when we on holiday earlier this year, he asked me if we lived together...just testing the water?!
Oh no my Mum was a “sex pest “ for months; craving Male attention, flirting, suggestive language. I even had to rescue a junior hospital dr one time before she exposed herself to him. The loss of inhibitions has caused Mums Male neighbours to flee at the sight of her!! Fortunately medication helps calm & keep her on the steady as of now!

It’s a area damaged by the dementia.... I’m just thankful that my mother is resistant to any form of technology!!!!
Otherwise I dread to think......
 

DesperateofDevon

Registered User
Jul 7, 2019
2,497
My husband's biggest problem is the memory, his short-term memory is virtually zero. As to scans he had one a few years ago, but only the one. This was when we lived in Wales and he attended a memory clinic once a year. Since we moved to England the doctor said that she didn't see the point in him attending the memory clinic now that he had his diagnosis. He has been seeing the doctor just once a year. This doctor has now left the practice. To tell the truth I feel sometimes that I am just side-lined and having to get on with it.
Someone else on here mentioned about "their PWD's latest scan". Should he be having more than just that one he had previously? I don't know.
My Dads slipped through the net on more than one occasion so I have no idea? Am in process of trying to get reassessments ofhis needs.
 

canary

Registered User
Feb 25, 2014
11,300
South coast
Someone else on here mentioned about "their PWD's latest scan". Should he be having more than just that one he had previously? I don't know.
I think it depends where you live and whether the doctors think the diagnosis might be wrong. OH is having more scans, but is because the doctors havent yet made a diagnosis. Mum had one scan, from which Alzheimers was diagnosed, and after that she never had another one.
 

PJ

Registered User
Jan 26, 2017
344
Bristol
Janet and Canary, my partner was diagnosed with FTD nearly two years ago, you both described the symptoms perfectly and I think I probably can understand the behaviour problems because I have found some upsetting content on his iPad which is totally out of character. I have learnt a lot about these rarer dementias from an open university website called’futureLearn’, through these free courses, I learnt much about different symptoms and the progress of this dreadful illness. We haven’t heard from our gp since the diagnosis but had a referral to a Memory clinic and have seen a specialist there and my partner was put on Rivastigmine, however I then read that these drugs are not licensed for FTD and may make things worse so now he has been taken off and has no medication. He has also been referred to a Neurologist but we haven’t heard anything back yet. We don’t know of anyone else with this type of dementia, no support groups in our area so it’s good to be in touch with you two. Sorry about the lengthy post!
Hi, sorry to hear of your partners diagnosis. I was diagnosed with bvFTD last year & was told there was no medication to help or slow progression like there is for other types of dementia. But since my diagnosis & slow progression I have now been given Donepezil which is normally not good for FTD as they have said it may be a type of Alzheimer’s that is very similar to FTD. I think it’s all a bit of a guessing game.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,497
Hi, sorry to hear of your partners diagnosis. I was diagnosed with bvFTD last year & was told there was no medication to help or slow progression like there is for other types of dementia. But since my diagnosis & slow progression I have now been given Donepezil which is normally not good for FTD as they have said it may be a type of Alzheimer’s that is very similar to FTD. I think it’s all a bit of a guessing game.
I hope it works for you my Dad couldn’t have it due to contraindications
X
 

PJ

Registered User
Jan 26, 2017
344
Bristol
I hope it works for you my Dad couldn’t have it due to contraindications
X
Sorry to hear that. I’m feeling quite positive about it atm. I’m going to have another spect scan soon to check progression but on the whole I think I do very well.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,497
My Mum & Dad are now both on memantine, definitely an improvement in Mums cognitive abilities & she’s less shaky

Donepezil was meant to be to be the first choice.
Wishing you all the best.
X
 

PJ

Registered User
Jan 26, 2017
344
Bristol
My Mum & Dad are now both on memantine, definitely an improvement in Mums cognitive abilities & she’s less shaky

Donepezil was meant to be to be the first choice.
Wishing you all the best.
X
Bless you that must be so hard with both parents. I’m pleased to hear your mums cognitive abilities have improved :)
 

DesperateofDevon

Registered User
Jul 7, 2019
2,497
Bless you that must be so hard with both parents. I’m pleased to hear your mums cognitive abilities have improved :)
Definitely sharpened up - but tiredness seems the trigger for confusion. Makes you realise how important rest is.
 

Florencefennel

Registered User
Jun 11, 2018
28
Yes, I agree that sending a letter before we see the specialist would save the embarrassment of explaining.
Also it means that I have time to think about what I need to discuss before we get there.
Hi, sorry to hear of your partners diagnosis. I was diagnosed with bvFTD last year & was told there was no medication to help or slow progression like there is for other types of dementia. But since my diagnosis & slow progression I have now been given Donepezil which is normally not good for FTD as they have said it may be a type of Alzheimer’s that is very similar to FTD. I think it’s all a bit of a guessing game.
 

Florencefennel

Registered User
Jun 11, 2018
28
Sorry to have been off line for a few days, my OH has now come off Rivastigmine and we are going to see the specialist at the memory clinic in 2 months time and monitor in the meantime. I was concerned when I read that the medication wasn’t licensed for FTD so was relieved that the dr readily agreed with me. It’s so difficult to know If I’m doing the right thing for him, it’s such a mine field and a steep learning curve.
 

Janey B

Registered User
Aug 15, 2019
23
You can speak to his GP & there are gentle medications that help reduce his desires .

Think bromide but more modern.....
if a loved ones behaviour is becoming unacceptable then please don’t be shy in talking to the GP or CMHT. This is dementia affecting his brain, part of his illness.
Still here !!! and struggling have applied controls to the internet and I think it’s helped a little. Spoken with consultant and she has suggested Benperidol anybody got any feedback on this drug please ?Done the usual searches.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,497
Still here !!! and struggling have applied controls to the internet and I think it’s helped a little. Spoken with consultant and she has suggested Benperidol anybody got any feedback on this drug please ?Done the usual searches.
no my lovely , but I do think it’s a good idea to follow the consultants recommendations. Any questions you have ring the medical secretary & raise your concerns - that way you will get your answers quickly & accurately.

take care
& good luck
Xx
 

Florencefennel

Registered User
Jun 11, 2018
28
Sorry to hear that. I’m feeling quite positive about it atm. I’m going to have another spect scan soon to check progression but on the whole I think I do very well.
Definitely sharpened up - but tiredness seems the trigger for confusion. Makes you realise how important rest is.
Yes PJ, I agree that tiredness is a constant trigger for confusion, it’s good that you are aware of it. My OH is always worse after a daytime sleep in his chair and says he can’t get his brain to wake up. However, because he spends so much time just sitting, using his iPad and is reluctant to help with chores, he does get a lot of rest. I find it so hard to motivate him. Hope you are coping.
 

Florencefennel

Registered User
Jun 11, 2018
28
I think sometimes that I am fortunate that my OH doesn’t have any inclination to wander outside the house, this afternoon I’ve been to visit a very poorly old friend in hospital so left him at home with the dog. He couldn’t remember where I’d been because he’d slept ( our dog joined him!) but was unconcerned. I don’t know if this will last but it allows me some freedom so has to be a positive. However, like Jenniferjean, I find it so difficult to get him motivated, I suggest the least boring jobs which he agrees to do but then the next time I look, he’s fast asleep!
 

jenniferjean

Registered User
Apr 2, 2016
660
Basingstoke, Hampshire
I think sometimes that I am fortunate that my OH doesn’t have any inclination to wander outside the house,
I've thought that too. My husband also has no inclination to wander. But I'm scared to leave him just in case he did try to find me. He's watching for me all the time, even if I take the bin outside he's looking for me. Sometimes he calls out "where are you?"
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
Hi folks
Despite already expecting a dementia diagnosis. I have mixed emotions about the outcome. Pleased that something is wrong !!! yet tearful and anxious about the future ( I have had 2 years of erratic behaviour) In fact as we went to the clinic my thoughts were if nothing is wrong with him “I’m leaving “ The diagnosis fits his symptoms exactly although he is 77 years old which according to the info is old for this type of Dementia. His right temporal lobe is badly damaged causing changes in his behaviour. OH thinks nothing is wrong with him. His apathy and lack of empathy has been really hard to deal with. He was a kind loving husband and father and I miss him. Other behaviours which I don’t really feel I can discuss with you all have caused me considerable distress. I wrote to the consultant and explained my difficulties and I am now just hoping for some medication to curb this behaviour. I am seeing the consultant independently next week so fingers crossed
My mind is over active worrying, planning and trying really hard to distract myself
Hi Janey B.

I feel for you, I really do. My husband was diagnosed with FTD @6 years ago, but he was only 64 years old. My husband also thinks there is nothing wrong with him, it's everyone else who doesn't understand. The first five years were fairly easy but this past year has been unbearable at times. He needs almost everything done for him and gives no appreciation. There is nothing like feeling you are not important, you are a nothing. I know it's not his fault but neither is it mine. I often think who will take care of me when I need it. All the best to you. we all need it. Many cyber hugs & much love & understanding coming your way.
 

Hubby1

New member
Oct 29, 2019
1
Hi all - my wife was diagnosed with FTD almost 12 months ago aged 51 :eek:
She had not been quite right for several years and the GP kept saying it was the menopause. Her speech was the main symptom.
We eventually want private for a second opinion and a consultant sent her for a brain scan. Three months later we got the bombshell and then basically shown the door with the "nothing we can do" message and when asked what to do was told "carry on as normal!". No fact sheet, no support group - zero.
For the past year we have been bobbing along carrying as "normal" thankfully with a loving family and a good bunch of friends.
After the shock of the diagnosis my wife ended up in coronary care for a week (Heart racing 280 bpm) and after nine months of drugs which made her feel ill she is now drug free and the heart appears fine again. Apparently no link between heart and brain problems although she had been having dizziness and hot flushes and tingling and palpitations for two years prior to diagnosis!
Twelve months on there doesn't appear to be any significant deterioration, although she is reluctant to join in big conversations because she fears getting her words mixed. She is thankfully still fully independent, got a better memory than me (I am 56) and holding down two jobs including working in an accounts department. No problem with numbers!
Everything she is passionate about in life, her family, her jobs, nature, recycling, cleaning beaches, shopping for bargains, she excels at. As I said to the specialist 12 months ago, she is the perfect wife. Prepares our meals most nights, always plans them and does all the shopping and cooking. Now she is off the meds she has bundles of energy and always appears happy and cheerful and a picture of health.
I realise FTD is different for everyone but I am really struggling to come to terms with the diagnosis. The day after the diagnosis we made a pledge to carry on as normal, live life to the full and never mention the D word again, unless she wanted to. I can't think too much about the future as obviously the outcome for any form of dementia is not good, especially when diagnosed so young.
The prognosis we were given from diagnosis was 4-6 years (but may be longer) - the fact we got early diagnosis due to going private I am hopefully it will be a lot longer. Certainly 12 months on she doesn't look like a lady three years from the end of her journey. If there is anyone out there who was given a similar diagnosis/prognosis with anything positive to say, I would love to hear from you, either as a carer/partner or indeed anyone with the condition.