• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

I'm comfused

jenniferjean

Registered User
Apr 2, 2016
664
Basingstoke, Hampshire
I've just picked up a printout of my husband's "problems" from our surgery. I needed a letter confirming his diagnosis so that I could apply for a blue badge on his behalf. The doctor left a message with the receptionist to say that this printout should be enough. All it is is a list of dates of medical conditions my husband has had.

The bit that relates to dementia is as follows :-

.......Date ......... .....................Problem.........................................................Associated Text
24-Apr-2018.................[X]Dementia in Alzheimer's disease...............frontotemporal


When we lived in Wales my husband attended the memory clinic starting 2015 and he was first diagnosed with MCI. After a while my doctor gave the opinion that it had progressed to dementia but I could not get confirmation of this from the memory clinic. He did have a scan but I was told no further information was available from this.
When we moved to England (March 2018) we had of course to find a new doctor. Then some time later I needed to fill in a form that asked for the type of dementia. I spoke to our new doctor on the phone and was told it was Alzheimer's, and that was all. But this new information has confused me. Can anyone help?
 

canary

Registered User
Feb 25, 2014
11,365
South coast
Looks clear as mud to me. It seems to be saying that he has Alzheimers and also that he has FTD.

Honestly, though, Im really not sure how much difference it will make to the staff who sort out the blue badges. If you have been told that its Alzheimers, Id be inclined to stick to that.
 

jenniferjean

Registered User
Apr 2, 2016
664
Basingstoke, Hampshire
Looks clear as mud to me. It seems to be saying that he has Alzheimers and also that he has FTD.

Honestly, though, Im really not sure how much difference it will make to the staff who sort out the blue badges. If you have been told that its Alzheimers, Id be inclined to stick to that.
Thank you, I had a feeling you would know. I would have just sent you a personal message but I didn't know how.
 

Janie M

Registered User
Jun 12, 2018
68
Don't get me started on Blue Badges!!! I applied for my husband, had to send I.D, proof of address, list of medication, and diagnosis letter. Yesterday I received a letter with a proforma in to be completed, "by the relevant Professional (this should not be your GP)" Who am I supposed to ask then, our chiropodist?
I spoke to our Alzheimer's navigator, she coming to see us tomorrow , even she can't believe that if we've send all that already but they want more!! The best part of it is that the proforma asks, will the condition improve within the next 3 years? Not much thought has been given to this by our council.
Rant over! Nothing is made easy!!
 

nitram

Registered User
Apr 6, 2011
19,727
North Manchester
It seems to be saying that he has Alzheimers and also that he has FTD.
It is possible to have mixed dementia, Alzheimers and vascular is very common.
As said if it just evidence for Blue Badge, does it matter?


I would have just sent you a personal message but I didn't know how.
Click on the member's avatar, as an example @canary's
2019-10-10_150729.png

Then click on 'start a conversion', enter title, type in message, and click on 'start a conversion'
 

canary

Registered User
Feb 25, 2014
11,365
South coast
t is possible to have mixed dementia, Alzheimers and vascular is very common.
True, but then the diagnosis would be mixed dementia, rather than saying Alzheimers in one place and FTD in another. I agree, though, I dont thnk it matters for getting a Blue Badge.
 

Philbo

Registered User
Feb 28, 2017
753
Kent
I've just renewed my wife's blue badge, as they only last for 3 years. The original one we got by downloading the form and filling in and posting. This was because although out LA was ahead of the times in allowing applications from people with dementia, the online process (3 years ago) involved a pre-application eligibility check which was based on tick-box answers, totally about physical disabilities. Of course non of these applied so "the computer said No!".

Three years later, and with the new "rules" being applied, this time the online process allows for conditions such as dementia anyway. You choose the option for (they have a non visible [hidden} condition). There were a whole lot of questions and typical scenarios but from memory, I only had to provide recent proof of identity, recent photo etc. Of course this was a renewal, not a new application but it was relatively straightforward and we got the badge within 2 weeks.

My wife has Fronto Temporal Dementia (FTD) but on the notes following each 6-monthly memory clinic appointments (stopped after 2 years), it was described as FTD, AZ FTD variant or FTD mixed dementia. So I have always referred to it as FTD.
 

jenniferjean

Registered User
Apr 2, 2016
664
Basingstoke, Hampshire
I dont thnk it matters for getting a Blue Badge.
I agree it doesn't matter for the Blue Badge, I just want to know for future when filling in any forms. I think I'll just do what you said earlier and stick to calling it Alzheimer's.
But I think I'll take a copy with me next time I visit GP and ask them what they mean.
 

jenniferjean

Registered User
Apr 2, 2016
664
Basingstoke, Hampshire
I've just renewed my wife's blue badge, as they only last for 3 years. The original one we got by downloading the form and filling in and posting. This was because although out LA was ahead of the times in allowing applications from people with dementia, the online process (3 years ago) involved a pre-application eligibility check which was based on tick-box answers, totally about physical disabilities. Of course non of these applied so "the computer said No!".

Three years later, and with the new "rules" being applied, this time the online process allows for conditions such as dementia anyway. You choose the option for (they have a non visible [hidden} condition). There were a whole lot of questions and typical scenarios but from memory, I only had to provide recent proof of identity, recent photo etc. Of course this was a renewal, not a new application but it was relatively straightforward and we got the badge within 2 weeks.

My wife has Fronto Temporal Dementia (FTD) but on the notes following each 6-monthly memory clinic appointments (stopped after 2 years), it was described as FTD, AZ FTD variant or FTD mixed dementia. So I have always referred to it as FTD.
Yes, the form I downloaded does have a section for non visible, hidden, conditions. So I've filled in that part and will send with all the copies of everything they've asked for, along with this list of patient's problems. If it is turned down through lack of proof my husband will have to have an assessment apparently, by occupational therapy team. That should be interesting as indoors he walks quite well, but outside he really struggles.
 

Red Eyes

Registered User
Jun 15, 2019
11
I used services of Age UK. They were brilliant. Knew exactly What to put on forms to get results.
 

Philbo

Registered User
Feb 28, 2017
753
Kent
Yes, the form I downloaded does have a section for non visible, hidden, conditions. So I've filled in that part and will send with all the copies of everything they've asked for, along with this list of patient's problems. If it is turned down through lack of proof my husband will have to have an assessment apparently, by occupational therapy team. That should be interesting as indoors he walks quite well, but outside he really struggles.
Although my wife would qualify now on her lack of physical mobility, our original case was based around the impact of dementia on her being able to get to and from the car, as well as being left in the car whilst I popped into shops, doctors the. So although she was able to walk to the car, she needed assistance/reassurance/space, as she would "freeze" and be reluctant to get into the car. Plus if I were parking to nip into the shop etc, if we were parked nearby, then she would be able to see where I'd gone and would sit waiting okay. If parked further away, out of sight, she'd get agitated and sometimes get out to look for me, getting confused and risk getting lost.

So it;s important to state both the physical and hidden elements on the application.

Good luck.
Phil
 

jenniferjean

Registered User
Apr 2, 2016
664
Basingstoke, Hampshire
Plus if I were parking to nip into the shop etc, if we were parked nearby, then she would be able to see where I'd gone and would sit waiting okay. If parked further away, out of sight, she'd get agitated and sometimes get out to look for me, getting confused and risk getting lost.

So it;s important to state both the physical and hidden elements on the application.
I don't drive but need the badge for when others take my husband out including the carer who takes him out during my take-a-break. All you've said above is true with my husband. I wish I'd thought of that before sending the form in.
 

AbbyGee

Registered User
Nov 26, 2018
37
Portsmouth, South Coast
I'll watch this thread with interest. A Blue Badge would help me with takings 'him indoors' on outings and getting around in a non panic and faffy way that would keep him happy and me sane. (I remember sane ..... hah!).

My OH has dementia in Alz and the local authority would want an assessment. That's the first hurdle failed, then. He gets his 'normal' head on. I wish, when we're at home and the fairies have stolen his feet or the wallet has done a runner or I'm and old moo, he was as much fun and able and bright and clever and totally with it as when we see some miscellaneous 'professional'.

The outside public world sees the him in the big, jolly host or guest mode. I wonder where the happy chappie disappears to when we get home. Is it really me? Have I done this to him? Am I that much of a moo. Do I make him behave in this manner?

Sorry, guys and gals .... looks like I've off gone off at a tangent .... best go refill the glass and slap on the happy smile, eh?
 

Philbo

Registered User
Feb 28, 2017
753
Kent
Hi @AbbyGee

I've never have any assessment done for my wife, either on the original application (3 years ago and before the recent hidden disabilities entitlement was introduced) or with the latest online process.

Go to the Blue Badge Gov website https://www.gov.uk/apply-blue-badge and it lists the things you will need. You then follow the instructions/tick boxes (including postcode so it finds your local authority) and then end up on a section where you tick the main reason for needing a badge.

What is the main reason they need a badge?
  • They have a permanent condition or disability which means they cannot walk or find walking very difficult
  • They have a terminal illness, which means they cannot walk or find walking very difficult and have a DS1500 form
  • They have a non-visible (hidden) condition, causing them to severely struggle with journeys between a vehicle and their destination
  • They have a severe disability in both arms and drive regularly, but cannot operate pay-and-display parking machines
  • None of these reasons
I ticked the 3rd option, as although my wife's mobility is now severely restricted, the main reason was/is her dementia aka a hidden disability.

It then takes you through a series of questions which are fairly self explanatory. It details what supporting documentation is required.

Hope this helps and good luck.

Phil
 

AbbyGee

Registered User
Nov 26, 2018
37
Portsmouth, South Coast
Hi @AbbyGee

I've never have any assessment done for my wife, either on the original application (3 years ago and before the recent hidden disabilities entitlement was introduced) or with the latest online process.

Go to the Blue Badge Gov website https://www.gov.uk/apply-blue-badge and it lists the things you will need. You then follow the instructions/tick boxes (including postcode so it finds your local authority) and then end up on a section where you tick the main reason for needing a badge.

What is the main reason they need a badge?
  • They have a permanent condition or disability which means they cannot walk or find walking very difficult
  • They have a terminal illness, which means they cannot walk or find walking very difficult and have a DS1500 form
  • They have a non-visible (hidden) condition, causing them to severely struggle with journeys between a vehicle and their destination
  • They have a severe disability in both arms and drive regularly, but cannot operate pay-and-display parking machines
  • None of these reasons
I ticked the 3rd option, as although my wife's mobility is now severely restricted, the main reason was/is her dementia aka a hidden disability.

It then takes you through a series of questions which are fairly self explanatory. It details what supporting documentation is required.

Hope this helps and good luck.

Phil
Thanks Phil. I'll probably take the route of least resistance and give up driving! :)
 

wightdancer

Registered User
Mar 15, 2017
61
I'll watch this thread with interest. A Blue Badge would help me with takings 'him indoors' on outings and getting around in a non panic and faffy way that would keep him happy and me sane. (I remember sane ..... hah!).

My OH has dementia in Alz and the local authority would want an assessment. That's the first hurdle failed, then. He gets his 'normal' head on. I wish, when we're at home and the fairies have stolen his feet or the wallet has done a runner or I'm and old moo, he was as much fun and able and bright and clever and totally with it as when we see some miscellaneous 'professional'.

The outside public world sees the him in the big, jolly host or guest mode. I wonder where the happy chappie disappears to when we get home. Is it really me? Have I done this to him? Am I that much of a moo. Do I make him behave in this manner?

Sorry, guys and gals .... looks like I've off gone off at a tangent .... best go refill the glass and slap on the happy smile, eh?
Hey, be strong, you are doing a great job without any thanks. You feel all alone, I understand that as I am in the same boat with my dear wife. Slowly you become more and more isolated as time is spent stuck doing mundane chores for a partner who in my case is almost oblivious to my existence. Like you I pour another glass of wine and enjoy a little peace before another day.
Nobody, be it family or friends can understand the loneliness of living with your partner when they are dependant strangers. You are not alone.