Worked example by condition

PIP answers for dementia

A worked example showing how each of the 12 PIP activities can be described for someone living with dementia. Every answer is written in the first person, in the plain wording assessors look for, and each one weaves in the reliability factors that decide how an activity scores.

How dementia affects a PIP claim

If you are reading this, you are probably filling this form in for someone else: your husband or wife, your mum or your dad. That is normal with dementia, and it is worth knowing from the start that you are the right person to be doing it, because you are the one who sees what an ordinary day actually looks like.

Dementia is not simply being forgetful. It affects memory, but it also affects knowing where you are, working out what to do next, judging what is safe, and holding on to something you were told a minute ago. Much of it is invisible in a short conversation, and that is the difficulty with this form. Your relative may be warm, polite and chatty, may say they are managing fine, and may genuinely believe it. Nobody is being untruthful. The illness itself takes away the ability to see the problem, and that is exactly why the form has to describe what really happens rather than what they say they can do when someone asks them out of the blue.

Write down everything you quietly do. This is where most dementia forms go wrong. The help has grown so gradually that it stops feeling like help: you put the tablets in his hand, you go with her to the shop, you check the cooker, you ring about the appointment. If none of that is on the page, an assessor reads the form and sees somebody coping at home. Put in who does what, how often, and what happened on the occasions nobody was there. A near miss is not a small thing to leave out; it is the clearest evidence you have.

Prompting, supervision and safety all count. You do not have to be lifting or physically doing a task for it to count. Reminding somebody, starting them off, standing with them while they do it, watching that a tablet is actually swallowed, or walking beside them so they get home safely are all things the form asks about. So is risk: a hob left on, a road crossed without looking, a front door left open at night.

Say when the day is worse. Many families notice that the afternoon and evening are harder than the morning: more confusion, more restlessness, more agitation, more wandering. If you only describe how the morning goes you will describe the best part of the day. The rules are clear that this is not the test. An activity only counts as something the person can do if they can do it safely, to an acceptable standard, repeatedly and in a reasonable time. Managing something once, with you sitting alongside, is not the same as managing it alone every time.

The example below is written in the first person, as the person themselves would say it, because that is how the form reads. Use their own words where you can, be specific about who does what, and do not soften it out of loyalty. The DWP always makes the final decision, but an accurate picture of a real day gives the form the strongest chance of being understood.

How your health condition affects youPIP2 · Q5
5. Managing your treatments
Does your condition affect you managing your treatments? (Put a cross in one box below)
✓ Yes
Tell us about the difficulties you have with monitoring changes in your health condition or disability and taking medication, and how you manage them.
I cannot take my medication on my own because I have no memory of whether I have already taken it. I have tablets in the morning and again at teatime. If the box is left where I can see it I will take a dose and then take the same dose again a short while later, because as far as I know I have not touched it. Before my daughter took over I twice took a whole day's tablets in one go, and I have also gone two or three days with none at all while telling her I had taken them every day. A dosette box on its own did not fix this. I would open the wrong day, or open the right day, tip the tablets onto the worktop and then walk away and forget them. So my daughter now comes in twice a day. She works out which tablets are due, puts them into my hand with a glass of water and stays with me until she has seen me swallow them, and then she takes the box home with her, because when it stayed here I helped myself to it. She orders my repeat prescriptions and collects them, because I would never know when I had run out. I could not tell you what any of my tablets are for. I also do not notice when I am unwell; she is the one who spots that I am more confused or unsteady and rings the surgery. This is worse in the afternoon and the evening, when I am at my most muddled, and that is when my teatime dose is due.
★ Suggested descriptor · 5b · 1 point
For the reader only: this question covers keeping an eye on the person's health as well as taking medicine, so name who hands the tablets over, who watches them being swallowed, and what happened on the occasions nobody was there.
How your health condition affects youPIP2 · Q13
13. Planning and following a journey
Does your condition affect you planning and following journeys? (Put a cross in one box below)
✓ Yes
Tell us more about the difficulties you have with planning and following journeys and how you manage them.
I cannot go anywhere on my own any more, not even along roads I have lived on for forty years. I set off for the shop at the end of my own street, which I have walked to every week since we moved here, and part way along nothing looks like anything I know. I cannot work out which way I have come from or which way home is, and I do not think to ask anybody. Last autumn I went out in the morning and a police officer found me four hours later two miles away, sitting at a bus stop in a road I had never been in, and I could not tell him my address. It has happened three more times since, twice from my own front door and once from outside the dentist while my son was paying at the desk. I cannot plan a journey at all now. I would not know which bus to get, which side of the road to stand on, or what to do if it did not turn up. I am also not safe near traffic, because I step off the kerb without looking and my son has pulled me back twice. All of this is worse in the afternoon and the evening, when I get restless and set off out of the door without knowing where I am going or telling anyone. Because of that, my son or my daughter-in-law is with me every single time I leave the house, from my door to wherever we are going and back again. On my own I would either not get there at all or would not find my way home.
★ Suggested descriptor · 13f · 12 points
For the reader only: this activity is about planning and following a route, not about how far someone can walk, so say plainly that familiar routes are lost too, and give the dates and details of any time the person went missing.
The other activities

What to cover for each one. Your paid form writes the full answers for you.

Q3

Preparing food

What to mention

Describe what really happens in the kitchen now: whether the hob or the oven can be left on, whether pans have boiled dry or food has been burnt, and whether the person still knows what is out of date or what needs cooking through. Mention that a simple meal has several steps in a set order and say how far through them they can get without somebody standing there. Name who has to be in the kitchen, and any burn, scald or smoke alarm that has already happened, because the question is about safety as much as ability.

Q4

Eating and drinking

What to mention

Keep this one to the act of taking food and drink, not to shopping for it or cooking it, which belong under preparing food. What counts here is needing to be reminded to eat or drink at all, food having to be cut up or put into their hand, somebody having to sit with them through the meal, or any coughing and choking that has started. If a plate put in front of them is still eaten without help, say so plainly, because an honest answer here makes the rest of the form more believable.

Q6

Washing and bathing

What to mention

Say how much reminding it takes to wash at all, and how often washing simply does not happen when nobody prompts. Describe anything unsafe, such as not judging how hot the water is, not being steady getting in or out, or not remembering how to work the shower, and say who has to be in the room or just outside the door. Mention the parts that get missed or the days when the same wash gets refused, and describe an ordinary day rather than the best one.

Q7

Using the toilet and managing incontinence

What to mention

This one is hard to write about somebody you love, but it matters, so keep it factual and matter of fact. Explain whether they still recognise the need in time, whether they can find the bathroom in an unfamiliar place or at night, and whether cleaning up afterwards is done properly without help. Mention pads, a commode, prompting to go, and any accidents and how often they happen, and say plainly what you have to do afterwards.

Q8

Dressing and undressing

What to mention

Explain whether clothes can still be chosen to suit the weather and the occasion, and what happens when nobody lays anything out: the same clothes worn for days, layers put on in the wrong order, or nothing warm on a cold day. Mention buttons, zips and shoes, how long it now takes, and the prompting needed to start and to finish. Say who does this in practice and whether it is worse later in the day when the person is more tired and confused.

Q9

Talking, listening and understanding

What to mention

Be clear about the difference between everyday chat, which may still sound perfectly normal, and anything longer or more involved, which is not: several instructions at once, what the nurse said, a phone call, a decision that needs making. Explain that words go missing mid-sentence, that things have to be said simply and repeated, and that they may agree with you without having taken it in. Name the trusted person who has to be there to explain and to check that the meaning has landed.

Q10

Reading

What to mention

Keep this to understanding and holding on to written information, not eyesight. Describe what happens with the post: whether letters are read but not understood, opened and put down, or left in a pile, and who has to go through them and then go through them again another day. Mention important things that were missed, such as an appointment letter or a bill, and whether written instructions, a note left on the side or the label on a medicine box are followed.

Q11

Mixing with other people

What to mention

Describe how the person is with people outside the immediate family now: whether familiar faces are still recognised, whether they can follow a conversation in a group, and whether they become upset, agitated or frightened around people they cannot place. Mention who has to be with them before they will manage seeing anyone, and any friends or activities that have quietly stopped. Include anything that puts them at risk, such as going along with a stranger at the door because they did not want to seem rude.

Q12

Managing money

What to mention

Explain what has already gone wrong with money, because that tells an assessor more than anything else: bills paid twice or not at all, cash taken out and not accounted for, the same shopping bought three times, or a doorstep caller talked them into something. Say whether prices and change are still understood, and who now holds the card, checks the account and pays the bills. Cover everyday amounts as well as bigger decisions, and describe what a week alone with the money would actually look like.

Q14

Moving around

What to mention

This activity is only about physical walking, so keep it apart from finding the way, which belongs under planning and following a journey. What counts here is a distance that has genuinely shortened, unsteadiness or a shuffling walk, falls, or somebody having to hold on to them because their legs and balance are no longer safe. If they can still walk as far as anyone else their age, say so and put the difficulty getting out under the journey question instead, because running the two together weakens both answers.

Your own answers, for every activity

The tips above are general pointers. Your paid form gives you a full, ready-to-copy answer for all 12 activities, written from your exact conditions, medication, aids and bad days, not a general example. This is a worked example for dementia; yours is written for you. £99.99 one-off.

How to use this example

This is a worked example, not a script. It shows one honest way a person living with dementia might describe an ordinary day, so you can see the level of detail and the plain wording that assessors are trained to look for. Please do not copy it word for word. The answers should reflect this person: what they can genuinely still do alone, what you have quietly taken over, and the help they need but do not get.

Two things help more than anything else when you are writing this for a parent or a partner. The first is to be specific about who does what. "She struggles with her tablets" tells an assessor almost nothing, while "I put them in her hand and stay until I have seen her swallow them, because she took a whole day's tablets in one go" tells them everything. The second is to write down the incidents: the time he was brought home by the police, the pan that boiled dry, the bill paid twice. Dates and details are what make a form believable.

It is also worth writing the form in the first person, as your relative would say it, and where you can, sitting with them and using their own words. If they play things down, and most people do, note what actually happens alongside it rather than arguing with them about it.

Being honest about what dementia has not taken away makes the difficulties you do describe far more believable, so there is no need to stretch every question. If you would rather start from your own words, tell us about the health conditions and we will write the answers from them, in the same first-person style, ready for you to read, edit and copy onto the PIP2 claim form or the AR1 review form.

K
Karol Slusarczyk
Founder, FillMyPIP · t/a Benefits Expert · ICO:00014179042

I have spent years helping people describe their conditions accurately on PIP forms, and I built FillMyPIP from that experience. I wrote this dementia example for the husbands, wives, sons and daughters who end up filling the form in, because so much of the help they give every day gets left off the page. I am not a solicitor, a doctor or a DWP employee, and this is guidance, not legal or medical advice.

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