Carol’s poem: ‘How it feels to complete a benefit form when living with dementia’

Carol, who is living with dementia, talks about her experience of completing a personal independence payments application form.

We frequently hear from people who have faced challenges when applying for benefits, including Personal Independence Payments.

Carol, who is living with dementia, talks about her experience and a poem she has written about it.

Carol’s story

My experience around the Personal Independence Payments application is negative and I hold no positive thoughts on the process. I have dementia so how can I remember the fine detail they expect from me? I anticipate that one slip of the tongue can result in me losing part or all of the payment. I often cannot remember what day it is. Every question is a hidden trap just waiting for the slip up.

The whole experience leaves me totally drained and exhausted. Along with a feeling of anxiety and worthlessness. Therefore the whole assessment system can only be seen as the enemy. I wonder how long it will be before the assessment will require me to bring my solicitor along.

 Carol with her husband, Brian. 

How it feels to complete a benefit form, by Carol

I received this letter the other day I recognised who from straight away. That thick brown envelope with the form inside I wanted to run far away and hide.  

So many pages, with questions galore Starting here turning forward to there. At the back of the form and then to the front This form was designed by one inconsiderate ‘PERSON.’  

So, I started this form on a Monday morning, After two hours I found myself yawning. Time for a coffee and a piece of cake Just enough to keep me awake.  

Reaching page six, I became frustrated I thru my pen down and felt so deflated. I put it away for another day, once refreshed After a sleep and when I’m not so stressed.  

Our dementia advisers are here for you.

Now on Day two and with very little sleep I must carry on and try not to weep. I know this form must be done quite soon Oh how I wish I could fly to moon.  

I have several ailments to write in detail, and at this point I was feeling very frail. I shouted at hubby, and then I cried. Then I slept for a while in my little Hyde.  

I wish those people could see us deplete as we with Dementia try to complete These dreadful forms, and how difficult it is When your exhausted and your heads in a Tis.  

Three emotional moments, some shouting out loud Many brain in a spin my head in the clouds Lost sleep, tears, screaming and so not fun Four days later and I’m finally done.  

Stress, stress, and more stress. Just what a person with Dementia needs!

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I didn't find completing the forms for Personal Independence Payment that bad. I had a lot to write on each of the pages, even using continuation paper! But they were not difficult at all. Probably because I do not suffer from dementia! I was completing the forms on behalf of my father who was diagnosed 16 months after the symptoms began, at the age of 63. I am amazed that the local authorities expect those with dementia to complete these forms and kudos to all those above who have managed to complete them. In fact I am completely flabbergasted! My dad doesn't even know what dementia is, even if he did he would not relate this to himself. I suggest getting your loved one to complete them for you. My dad raised me for 30 years of his life, so it's now my turn to help him with everything that this cruel disease brings upon him.

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I am a daughter retired with a family and husband and my mother who lives 2 doors away from us has dementia. The endless forms are exchasting and we find out about things along the way like the not having to pay rates but the assistant from Barking and Dagenham Council who was insistant that as my mother did not have a computer (everything is computer /email in the council) she could get the bus to the town hall and complete the form on their computer she just had to wait until someone was avalible. On exlaining my mums condition i was told by 2 people it was only one bus. Oh my mother is also disabled which they knew about. You just cant make it up - shame on these authority bodies that make life so unbearable for thoseand their families dealing with these conditions just trying to live. So much for the Lord Mayor of London hoping to make it a dementia friendly society inclusive of all. Try stepping alongside families for a couple of months all day and night to see what they have to do to live.

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Hello Sandra,
Thank you for sharing your thoughts - although we're very sorry to hear about the difficulties you faced. If you're in need of some help or support, please contact our National Dementia Helpline on 0300 222 11 22 (opening hours: Alternatively, you may find sharing your experiences within our online community beneficial - here's more information about Talking Point:…
We hope this is helpful.
Alzheimer's Society Blog Team

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You hit the nail on the head with that poem Carol, Well done you !! My husband was diagnosed with alzimers last February at the age of 49 , he had to have many face to face assessments which were gruling it took 14 months to get any help financaily. As if it's not bad enough having to come to terms with such a cruel illness you have to prove yourself .I think it's disgusting that people like my husband and you have to go through these things just to make life a little easier. I wish u all the luck in the world and hope you manage to get it all sorted out

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I have e-mailed before on the excellent "template" set out by Peter Garside and again commend it to all.The refusal of CHC for my wife,Catherine,who is in full time care and then the about turn without telling me has unveiled a catalogue of errors. I issued a complaint and expect a response by 25 May. Since the local council,Darlington, was involved through Social Care the Complaints Team in Durham told me that their time scale for this was three months! Would you believe it? Incredible in this day and age! Except of course in the NHS...Bill Burrows.

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Obviously the system is not dimentia friendly and maybe they should be sent on scourge or is it to late for them ????? You pay in but as soon as you req help mountains appear why in to days ultra modern and fast life yours sincerely Val C

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I feel so sorry for the many persons suffering with dementia and so many other illnesses who struggle with "Form Filling",Fortunately,when my wife was first
diagnosed in 2012 a very kind lady from The Alzheimer's Society visited us at
home,made and Assessment,and completed the Attendance Allowance Forms
sending to the D.W.P. I seem to remember it was all painless and the Payments
were forthcoming shortly after her visit.
However,I expect now that due to the very heavy demands the Alzheimer's Society
too struggle to cope with Form Filling?
I fairly recently experienced a neighbour who was discharged from Hospital and
advised to contact AGE U.K.or Citizents Advice Bureau to visit him to complete
the Attendance Allowance Application forms.He was 65 years old and struggled
with any "paperwork".His mother passed-away four years previously and she attended to ALL of the paperwork..After five weeks in hospital he returned home to
find masses of Demand Letters and Bills mixed amongst piles of magazines.My
neighbour had pulmonary fibrosis and at that time he was very heavily dependent
on an Oxygen machine.He had only 20% long capacity.AGE UK were "heavily booked"as was CAB to provide help!After waiting two weeks for them to come back I downloaded and printed the A.A.Application Forms.All 31 pages of mainly repetitive questions over a week's period with him.This was necessary due to his
breathing problems!Sadly he did obtain his DWP A.A.allowance and four weeks

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good of you to put it down. Glad you finished it after 4 days

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this was wonderful to read and so true, there needs to be a better system and most of all, the people sit in their offices marking these forms like an examiner need to spend a day in a dementia home and then go away and be trained in the field, this might make them think again

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Carol I can sympathise with your situation. The huge amount of paperwork required would make a Solicitor with both time & expertise feel challenged ! I would suggest you get help from your Carer & local advice agencies as the Information Booklet advises. PIP appears more complex that Disability Allowances which it is replacing.

Getting help to claim Continuing Healthcare ( CHC) from NHS is my own expertise ,& where health situations which are overall very complex & include Dementia should qualify for CHC benefit which are not means tested. NHS are obliged to pay the full costs if you can through the Application procedures. Full details are on my website

Good luck with your application.

Peter Garside

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Thank you so much for your comprehensive ‘story’ Peter.
Although my husband has Vascular Dementia needing a wheel chair, total help with ALL personal hygiene, unable to carry on a conversation....the list goes on, we have yet to be visited my the Memory Clinic services. We are both in our eighties and I find the going tough. However, I have noted your instructions to record all details so that if and when we are seen, I will have a comprehensive list of difficulties

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What a wonderful way to express yourself Carol. I recently lost my wife to Alzheimers, but in the early stages I tried completing forms myself and was rejected, but on the advice of our local Alzheimers Society office I got in touch with Age UK who completed new forms, verified documents,aids etc and it went straight through with no problem. I hope this may have been of help to you and your husband. Good luck! Alan

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