Is it worth getting an official diagnosis in this situation?

[Skibunny40]

Hello there

I'm new to this forum, but I strongly suspect my 86yo dad has vascular dementia. He's just been diagnosed with cerebral small vessel disease which seems to tie in with the symptoms of vascular dementia and would explain a lot of his behaviours. He struggles to follow a lot of medical conversations, but I know he would hate to think he had dementia, so I'm hesitant to push for a diagnosis as there doesn't seem to be much point?

He is already on statins, amlopidine and clopidogrel, gets Attendance Allowance, has had the house fully modified for balance issues, has Power of Attorney in place, even a DNR and Advance Directive ( he was very organised when younger!)...is there anything else he would benefit from having a proper diagnosis? Or am I right in thinking the upset it would cause him to think he was "losing his marbles" (his words, not mine) simply isn't worth it?​

 

[AliceA]

You may find the diagnosis cerebral small vessel disease is the actual diagnosis you need to access help if and when needed.
My husband was told he had severe small vessel disease. That prompted the home visit of the memory nurse to do tests and give advice.
Vascular dementia drops in steps, some platforms can be stable for a long time before a drop.
We were given a score but it was considered it was not needed to retest. There would be a decline but the rate depended on many factors.
The diagnosis should allow a reduction in Council tax. We usually refer to him havining a brain condition. My husband, older than your father, dislikes the word dementia because he feels it sounds as if he is demented.
I only use the word when it is politic to stress it to get the help he needs.
I believe that preserving dignity is paramount when we care for someone compassionately. Kind regards, Alice

 

[Skibunny40]

Thanks Alice - my dad actually lives with us, so we wouldn't get the council tax reduction but that's the sort of thing I was wondering about.

Good to know that the small vessel disease description in itself might be enough to get the ball rolling. It was actually the stroke nurse who told us today after Dad had a TIA a couple of weeks ago and we have a GP follow-up appointment tomorrow so I'll let the GP lead the conversation and see what they suggest.

 

[AliceA]

I am sure you may find that you will get the Council tax reduction, I could be wrong but worth a try. I put it off because of my husband feelings however I had it back dated to the date of diagnosis. Worth a try.
I had to produce the AA and diagnosis as hard copies. 25% is worth having. I am more than capable to fill in forms but for this sort of thing it is worth approaching AgeUK they know how to answer. My husband was awarded full AA. We as people who care tend to put on a brave face so are not as objective. Good luck.

 

[tryingmybest]

Hi just popping in to say that yes both your Father and yourself, as his carer, would be disregarded for council tax. You just have to apply for the "severe mental impairment" disregard and send proof by letter from the doctor. I did for my Mum and I but they will sometimes try and fob you off (so I have heard from others) so do insist!!

Also, both my late Father, and now my Mother, had small vessel disease recorded in their medical notes which leads to vascular dementia. Neither of them had an official diagnosis via a memory clinic however. Hope this helps.

 

[Banjomansmate]

I told The Banjoman he had Lewy Body Disease rather than LB Dementia and that his brain just wasn’t working properly, which made it sound better than using the “D” word.

 

[Dosey]

Thanks Alice - my dad actually lives with us, so we wouldn't get the council tax reduction but that's the sort of thing I was wondering about.

Good to know that the small vessel disease description in itself might be enough to get the ball rolling. It was actually the stroke nurse who told us today after Dad had a TIA a couple of weeks ago and we have a GP follow-up appointment tomorrow so I'll let the GP lead the conversation and see what they suggest.

Hi Skinni bunny
You say your dad lives with us. I take it there are 3 adults in the house including your dad. You will not get the 25% allowance . If you lived alone with your dad in your house you would be eligible. The 25% is a single occupant allowance , therefore as your dad is excempt you count as one.
PWD who live alone get 100% discount. That's how it works. We didn't get allowance as there was me, my son and husband (PWD) in house.
Rose

 

[Max68]

Hi just popping in to say that yes both your Father and yourself, as his carer, would be disregarded for council tax. You just have to apply for the "severe mental impairment" disregard and send proof by letter from the doctor. I did for my Mum and I but they will sometimes try and fob you off (so I have heard from others) so do insist!!

Also, both my late Father, and now my Mother, had small vessel disease recorded in their medical notes which leads to vascular dementia. Neither of them had an official diagnosis via a memory clinic however. Hope this helps.

It's interesting that you say this. I've been trying to get a Council Tax reduction for mum as she is in hospital and then moving into a care home but the GP's seem reluctant to sign the form from the Council because mum's last diagnosis a few months ago was Mild Cognitive Impairment and yet she now has a capacity statement declaring she no longer has capacity so not sure if the council will take MCI as being severely mentally impaired of which she now is. So it looks like we would have to get a new diagnosis. I understand the authorities want to protect the "patient" but the system makes it very difficult for relatives to help.

 

[tryingmybest]

It's interesting that you say this. I've been trying to get a Council Tax reduction for mum as she is in hospital and then moving into a care home but the GP's seem reluctant to sign the form from the Council because mum's last diagnosis a few months ago was Mild Cognitive Impairment and yet she now has a capacity statement declaring she no longer has capacity so not sure if the council will take MCI as being severely mentally impaired of which she now is. So it looks like we would have to get a new diagnosis. I understand the authorities want to protect the "patient" but the system makes it very difficult for relatives to help.

Life is hard enough without fighting for everything. If you have something in writing as in a statenent, just copy it and send/take it to your council. It should be adequate without the doctor signing a form. That's what I did for Mum. Your Mum is entitled to a full disregard as opposed to a discounted rate. Do not let them fob you off or say shes only entitled to a discount. I wouldn't complicate matters by telling them about her being in hospital or that she is to move into a care home. Good luck.

 

[maryjoan]

Thanks Alice - my dad actually lives with us, so we wouldn't get the council tax reduction but that's the sort of thing I was wondering about.

Good to know that the small vessel disease description in itself might be enough to get the ball rolling. It was actually the stroke nurse who told us today after Dad had a TIA a couple of weeks ago and we have a GP follow-up appointment tomorrow so I'll let the GP lead the conversation and see what they suggest.

You will get he Council Tax reduction of 25%. All we needed was a letter from our Doctor which simply said that "..... was totally incapable of independent living"