PIP application - is there any point?

sarahsea

Registered User
Dec 19, 2017
66
0
Hi, I'm really looking for advice from someone who has been through the PiP process on behalf of a PWD. My OH was diagnosed with early onset Alzheimer's last November. He is now 61. We have no income and cannot claim state pensions till we're 66. His Consultant Psychiatrist advised us to apply for PiP which would also make us eligible for a council tax reduction and for me to claim carer's allowance. We have been living on savings and the extra income would certainly help, but I am doubtful if an application would be successful. I have PoA for finances and property which OH agreed to a few months ago (not sure how that happened) and when I made the initial phone application for PiP I was told that I can apply on his behalf - just waiting for the 36 page application form to come through the post.
So, this is the problem: my OH does not remember / accept / understand the diagnosis (depending on which day you talk to him). His memory is very poor - he doesn't remember what he did a few hours ago, he doesn't know where we met (we've been married 3 years), he has "lost" many years of his life, he asks repetitive questions. He has trouble following conversations, he cannot recognise people or follow directions, struggles with every day interactions with people, unable to read body language or respond appropriately. I do all every tasks for him - shopping, cooking, cleaning, washing, financial management, drive him everywhere, remind him to take medication etc. He could not survive without my help (or someone else's help.)
I'm sure you will all understand my description. He will NOT accept that he has dementia, or even any memory loss. He has recently been prescribed Donepezil, but refuses to take it as he doesn't have dementia. My understanding is that he would be interviewed by an assessor for PiP. How can that work if he insists that there's nothing wrong with him?
Does anyone have experience of applying for PiP when the person they care for does not accept the diagnosis? I'm wondering if there's any point in applying. Thank you for reading.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Hello, I’m sorry, I’ve not done the PiP, I completed the Attendance Allowance form on behalf of my husband. I know it is very different, but just to pick up on one point...your husband has a diagnosis. So it won’t be a case of you having to ‘prove’ he has dementia by him talking to an assessor. Any interview will be looked at in conjunction with the evidence provided.
And maybe a tiny ray of hope...so many PiP claims were rejected in past months that the whole system has been looked at and many appeals have now succeeded.
Hopefully someone who has completed the form will answer you soon.
 

DM1

Registered User
Jul 28, 2018
38
0
Hi Sarah,
Don't really know anything about the PiP but you can contact your Local Authority directly to ask for the C.Tax reduction, they will just need a copy of the diagnosis and the refund will be from the same date. Good luck and wish you well.
 

sarahsea

Registered User
Dec 19, 2017
66
0
Hello, I’m sorry, I’ve not done the PiP, I completed the Attendance Allowance form on behalf of my husband. I know it is very different, but just to pick up on one point...your husband has a diagnosis. So it won’t be a case of you having to ‘prove’ he has dementia by him talking to an assessor. Any interview will be looked at in conjunction with the evidence provided.
And maybe a tiny ray of hope...so many PiP claims were rejected in past months that the whole system has been looked at and many appeals have now succeeded.
Hopefully someone who has completed the form will answer you soon.
Thank you for your reply. I wondered if a letter from his consultant would help? My husband can give the impression that there's nothing wrong and would probably refuse to meet an assessor anyway! I have also heard that a high number of unsuccessful PiP applications have gone through on appeal. I think I'm just worn down by by circumstances and not feeling strong enough to fight the battle!
 

sarahsea

Registered User
Dec 19, 2017
66
0
Hi Sarah,
Don't really know anything about the PiP but you can contact your Local Authority directly to ask for the C.Tax reduction, they will just need a copy of the diagnosis and the refund will be from the same date. Good luck and wish you well.
Thank you DM1. I contacted the council and they said we had to be in receipt of benefits to get the council tax discount. They mentioned PiP as a qualifying benefit, so I assumed I had to apply for that first.
 

Beate

Registered User
May 21, 2014
12,179
0
London
Sorry, but if you are talking about the SMI council tax disregard, you do indeed need to be in receipt of PIP or AA, and a diagnosis on its own is not enough.
 

Kevinl

Registered User
Aug 24, 2013
6,053
0
Salford
If you
Sarah,
I would question this, I don't think it is income related in any way.
https://www.alzheimers.org.uk/get-support/legal-financial/council-tax-dementia
Have you applied for attendance allowance?
The PWD here is only 61 so isn't eligible for AA, hence they have to apply for PIPS.
Council Tax cannot be levied on a number of groups of people; children, students obviously but it also cannot be levied on someone who has a "Significant Mental Impairment" but it has to be significant, a diagnosis alone isn't proof that the impairment is "significant".
You can usually apply for the "disregard" (important that you use the right word, a "discount" on CT is means tested a disregard isn't) and they will ask if they can contact your GP or send you a form for the GP to sign, if the GP is happy that it constitutes an SMI not mild or moderate then you get the disregard.
When I first got it my wife wasn't in receipt of any benefits. AA and PIP along with a few others, provided they're awarded for an SMI are "passport" benefits as the DWP will have interviewed the person so it gets rubber stamped pretty much.
Definitely apply for PIP and if you need any help with the forms ask your local AZ society, AgeUK or CAB and they may well be able to help you fill them in, we have a local LA advocacy service and they'll help with any benefits claims for free, but that's in our area, it doesn't appear to be generally available.
Getting certain benefits can be a passport to getting other help too so definitely apply.
K
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,112
0
south-east London
Yes, do apply for PIP, there is every point in doing so.

My husband was 58 when first diagnosed with dementia six years ago. He never denied having dementia but he certainly felt awkward about PIP being applied for because he felt 'a fraud' in doing so - he felt he was able to get along just fine as things were.

Yes, in those early days his mobility was perfectly fine, he could go out and about by himself, make a sandwich and cups of tea: carry out his own personal care and even do voluntary work - so he was leading a fairly normal life.

However, when he was in the early stages of the disease it was still possible to reason with him and it was a bit of an eye-opener for him when he realised that he was getting along just fine because I was the one doing the shopping, cooking hot meals, helping him communicate, doing the laundry, journey planning, handling finances, keeping him safe and much more besides.

The Alzheimer's Society encouraged us to apply even though we were in the early stages. We thought at best we might scrape the lower rate and could then reapply later on as the disease progressed once we qualified for the higher rate. However, it was the best part of six months before the interview took place and by then my husband's abilities had deteriorated further and he actually ended up being put on the higher rate for both components of PIP from the start.

The interview was carried out at home. At no point was my husband asked if he understood or accepted his diagnosis. I had already provided medical evidence to confirm his diagnosis and the interview itself was generally just going through the form I had completed on his behalf, with the assessor chatting to my husband along the way - but also asking for further clarification from me if needed.

The only direct test I can recall my husband being given was when she tested his ability to understand finance and whether he was being given the right change in shops. Other than that she was able to draw her own conclusions from the general conversation we were having. To be honest, I don't think my husband even realised he was being assessed for anything - he was quite happy throughout and once the assessor had gone, thought we had enjoyed a nice social visit from a friend of mine :)

When you complete the form just remember to tell how things are on the worst day. Don't be afraid to seek guidance from your local Alzheimer's Society branch, Age UK or Carers Support group when completing the form - it is very easy for us as carers to overlook or play down exactly how much we actually do for our loved ones.

Also, don't be afraid of repeating yourself in different sections. I seem to recall that the pages can be separated up so different people are reading information in each category. Where the same observations are relevant to different categories include them in both categories and then you'll be sure that each person reading the application is getting the full picture.
 

sarahsea

Registered User
Dec 19, 2017
66
0
Sorry, but if you are talking about the SMI council tax disregard, you do indeed need to be in receipt of PIP or AA, and a diagnosis on its own is not enough.
Yes, I meant the council tax disregard - think I was using the wrong term. I got the impression that a diagnosis wasn't sufficient, but a diagnosis would support a PiP claim.
 

sarahsea

Registered User
Dec 19, 2017
66
0
If you

The PWD here is only 61 so isn't eligible for AA, hence they have to apply for PIPS.
Council Tax cannot be levied on a number of groups of people; children, students obviously but it also cannot be levied on someone who has a "Significant Mental Impairment" but it has to be significant, a diagnosis alone isn't proof that the impairment is "significant".
You can usually apply for the "disregard" (important that you use the right word, a "discount" on CT is means tested a disregard isn't) and they will ask if they can contact your GP or send you a form for the GP to sign, if the GP is happy that it constitutes an SMI not mild or moderate then you get the disregard.
When I first got it my wife wasn't in receipt of any benefits. AA and PIP along with a few others, provided they're awarded for an SMI are "passport" benefits as the DWP will have interviewed the person so it gets rubber stamped pretty much.
Definitely apply for PIP and if you need any help with the forms ask your local AZ society, AgeUK or CAB and they may well be able to help you fill them in, we have a local LA advocacy service and they'll help with any benefits claims for free, but that's in our area, it doesn't appear to be generally available.
Getting certain benefits can be a passport to getting other help too so definitely apply.
K
Thank you so much for your reply. I was just thinking the other day that my passport needs renewing, but I probably won't bother as I can't go away (my husband couldn't cope with a holiday and I can't go alone as he is very confused if I spend just one night away.) Turns out I need a different sort of passport - a benefits one!!! It just reminded me how much my life has changed in the last 2 or 3 years. I will take your advice and complete the PiP application. Thanks again for your helpful reply.
 

sarahsea

Registered User
Dec 19, 2017
66
0
Yes, do apply for PIP, there is every point in doing so.

My husband was 58 when first diagnosed with dementia six years ago. He never denied having dementia but he certainly felt awkward about PIP being applied for because he felt 'a fraud' in doing so - he felt he was able to get along just fine as things were.

Yes, in those early days his mobility was perfectly fine, he could go out and about by himself, make a sandwich and cups of tea: carry out his own personal care and even do voluntary work - so he was leading a fairly normal life.

However, when he was in the early stages of the disease it was still possible to reason with him and it was a bit of an eye-opener for him when he realised that he was getting along just fine because I was the one doing the shopping, cooking hot meals, helping him communicate, doing the laundry, journey planning, handling finances, keeping him safe and much more besides.

The Alzheimer's Society encouraged us to apply even though we were in the early stages. We thought at best we might scrape the lower rate and could then reapply later on as the disease progressed once we qualified for the higher rate. However, it was the best part of six months before the interview took place and by then my husband's abilities had deteriorated further and he actually ended up being put on the higher rate for both components of PIP from the start.

The interview was carried out at home. At no point was my husband asked if he understood or accepted his diagnosis. I had already provided medical evidence to confirm his diagnosis and the interview itself was generally just going through the form I had completed on his behalf, with the assessor chatting to my husband along the way - but also asking for further clarification from me if needed.

The only direct test I can recall my husband being given was when she tested his ability to understand finance and whether he was being given the right change in shops. Other than that she was able to draw her own conclusions from the general conversation we were having. To be honest, I don't think my husband even realised he was being assessed for anything - he was quite happy throughout and once the assessor had gone, thought we had enjoyed a nice social visit from a friend of mine :)

When you complete the form just remember to tell how things are on the worst day. Don't be afraid to seek guidance from your local Alzheimer's Society branch, Age UK or Carers Support group when completing the form - it is very easy for us as carers to overlook or play down exactly how much we actually do for our loved ones.

Also, don't be afraid of repeating yourself in different sections. I seem to recall that the pages can be separated up so different people are reading information in each category. Where the same observations are relevant to different categories include them in both categories and then you'll be sure that each person reading the application is getting the full picture.

Thank you for such a comprehensive reply. It's especially helpful to hear about how the interview / assessment went. I will go ahead and apply, I think I was just concerned that I would spend ages completing the paperwork only for the application to be scuppered by my husband confidently telling the assessor about all the work projects he's setting up and the various groups he's running (sadly only existing in his head, but he can be quite convincing.) We recently had a visit from a CPN who brought a healthcare assistant with her - he was going to try and find some suitable voluntary work for my husband. Afterwards my husband asked me who the woman was (the CPN, who had been to the house 3 times previously) and why did she bring her husband with her?! So, there's a lot which he can't follow anymore, particularly if people speak quickly. Thanks again for your advice. I will stop procrastinating and just get on with it!
 

Beate

Registered User
May 21, 2014
12,179
0
London
It's probably helpful if you mention all this in the application so that the assessor can get a true picture of his difficulties, including his inability to understand his diagnosis. There is even a word for it beginning with a which I can never remember but someone else here might.
 
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sarahsea

Registered User
Dec 19, 2017
66
0
It's probably helpful if you mention all this in the application so that assessor can get a true picture of his difficulties, including his inability to understand his diagnosis. There is even a word for it beginning with a which I can never remember but someone else here might. So
That's a good point, thank you. I think the word is Anosognosia - I saw it somewhere on TP.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
If you do get turned down - appeal.
We had to do this when OH was changed from sickness benefit to ESA and after I appealed it just went straight through.
 

tss502

Registered User
Oct 20, 2014
110
0
Hi, we successfully applied for PIP a few years ago. My OH is now 59. I completed the forms on his behalf. I intended to attend the meeting with the assessor and had flagged that I would do so, but on the day the assessor turned up at a different time and saw my OH alone. My OH told the assessor that he was fine and I thought at that point that he wouldn't get the benefit. However, as part of the process the GP is required to provide a diagnosis. This was provided, though there was some confusion about who was responsible for obtaining this - me or the assessor. In the end the assessor obtained it. We were granted the PIP at the enhanced level without any further difficulties. I would say try and make sure you are present when the assessment takes place and clearly state the difficulties that your OH has - even though he may insist that all is fine. On obtaining PIP we were able to successfully apply for other benefits, including the council tax disregard and CEA card (for cinema).
 

sarahsea

Registered User
Dec 19, 2017
66
0
Hi, we successfully applied for PIP a few years ago. My OH is now 59. I completed the forms on his behalf. I intended to attend the meeting with the assessor and had flagged that I would do so, but on the day the assessor turned up at a different time and saw my OH alone. My OH told the assessor that he was fine and I thought at that point that he wouldn't get the benefit. However, as part of the process the GP is required to provide a diagnosis. This was provided, though there was some confusion about who was responsible for obtaining this - me or the assessor. In the end the assessor obtained it. We were granted the PIP at the enhanced level without any further difficulties. I would say try and make sure you are present when the assessment takes place and clearly state the difficulties that your OH has - even though he may insist that all is fine. On obtaining PIP we were able to successfully apply for other benefits, including the council tax disregard and CEA card (for cinema).

Thank you - that's really useful information. I would definitely want to be present for the assessment meeting and also your comment about a letter from the GP confirming the diagnosis.would clearly help, so I will follow that up. Many thanks for your reply, it's much appreciated.
 

sarahsea

Registered User
Dec 19, 2017
66
0
If you do get turned down - appeal.
We had to do this when OH was changed from sickness benefit to ESA and after I appealed it just went straight through.

Thank your for your reply. I have heard that 70% of appeals are successful. Clearly demonstrates that the system isn't fit for purpose, but I will persevere if necessary !
 

BeardyD

Registered User
Jan 19, 2016
89
0
We successfully applied for PIP about 3 years ago. It all went very smoothly. Some items on the assessment were marked lower than expected (my wife could still talk the talk) and others higher but they balanced out.

I applied on behalf of my wife as I have Power of Attorney. This took a few extra days for them to register it but (if I remember correctly) any payment given is backdated to the day of the first phone call. I was with my wife during the interview and the interviewer asked my opinion on most questions after my wife had given her answer.

The thing to remember about PIP is that it is given for the effect of an illness on your and your OH's life, not on a diagnosis of the illness. So just having a diagnosis of Alzheimer's isn't enough, you have to show that there are things your OH has difficulty doing and give examples.

I found the best way to do this was to keep a diary over 3 (bad) days - the headings for the diary were with the online application form. I made a note at the top of the diary that I had written it but it was presented from my wife's point of view. To some extent you need to stand back and write the diary in a very factual way, this is where the Alzheimer Society or CAB may help.

For example under "Dressing / Undressing" we put "Needed help to decide what to wear. Dressed myself except socks and shoes. Needed reminding to put on glasses and hearing aids. Undressed myself at night". Best to be completely honest (helps you at the interview) but don't be afraid of putting in trivial issues. Include all the times your OH gets confused, forgets things or needs help.

@sarahsea I think you've got all the relevant symptoms in your paragraph starting "So, this is the problem" but instead of "he cannot recognise people" you'll need real examples such as "We met X in town today, OH has known him well for 5 years but didn't recognise him". Keep a notebook for a few days and every time something happens write in the time, place and a one sentence description of what happened. Don't write too much and don't try to go back to refine notes afterwards. After week go through the all notes and you'll have the basis of your diary.

Even if you can only get the minimum level of PIP apply before your OH is 65 as PIP is more than Attendance Allowance. PIP continues after your OH is 65 and can be reassessed at any age.