State of Caring Survey - 2025

Last year over 12,500 of you filled in our State of Caring survey. We are so grateful to every single carer who took the time to respond.

We would really like to hear your experiences of being an unpaid carer in 2025. Please fill out our survey by **10 August on this link: https://www.surveymonkey.com/r/QN5PPJC

Our annual State of Caring survey is the most extensive survey into unpaid carers’ experiences in the UK. It is used as a vital source of evidence not only by Carers UK, but by many other organisations including Government, local authorities, health and social care services, charities and carers’ groups. Carers UK is a membership organisation, and we cannot campaign for change without carers’ help. With new proposals and policy changes being announced by the UK Government, it is more important than ever that you have your say.

Thank you in advance for completing the survey.

Done. Glad to see that you now ask if people have been caring for over 50 years!

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Filled in but little space to add my worries about how ‘mental capacity’ is defined and also how the mentally ill and the elderly are allowed to not just put themselves in danger but also others and nothing can be done as it interfers with THEIR human rights. So if my husband walked into the road and caused a crash because the cars tried not to hit him, this would be acceptable? I guess I would be told to ‘hold him back’ or keep him at home but the former is not a viable option for my safety and the latter means MY quality of life is becoming impacted very badly. I agree there are no ‘cut and paste easy answers’ but this does need to be discussed and Carers UK need to be aware that this happening. The Dementia Forum too has people in similar positions to myself and yes, I have written to his GP.

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I found the questionnaire far too interested in working carers and carers of working age. Nothing about young carers, parent carers, retired carers and the issues around them. I’ve been all five at one time or another, and although many issues are similar, I can tell you that the only future I’m interested in now is that of my wife and sons. The only way I won’t be a carer in the future is through my incapacity or death. Financial advice for me would come far too late - and when I sought it 30 years ago, the agencies I contacted either knew nothing about it or knew nothing about caring and the impact it has on income. I suspect very little has changed.

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The Chancellor keeps talking about “working people” but doesn’t recognise the hardest working people of all, for up to 168 hours a week are unpaid carers. How can we change the view that being a carer is a soft option? No respite - day centres and respite homes closed!

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@bowlingbun I would love to say ‘strike’ but Carers are compassionate so we would not do this. Lobby our local Councillors? MP’s? Get Legal Advice is we are in a position where Adult Social Services are trying to ‘force’ us to care even if it is not in our mental health or physical health interests as we are all getting older.

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I have to agree with the comment @Charlesh47 made on Roll Call thread about the Survey focussing a lot on WORKING Carers and how to make it possible to work longer hours and still be a Carer. I feel this misses the fact that a HUGE number of us are unable to work due, not just to the number of hours we work as Unpaid Carers, but also the toll it takes on us - leaving us exhausted physically and emotionally. I had planned to get a part-time job after Graham’s stroke but there is NO WAY I could hold down a job now (perhaps I am unemployable?) because of the uncertainty of his condition - one morning he can be fine to be left for a while, yet another he can’t be left for more than 20 minutes. NO employer would or could be flexible enough to cope with that.

@Paola_Carers_UK I do hope this will be picked up by CUK.

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@Chris_22081 You are so right. I too would LOVE a part time job because if E does go into residential care I would need to work to have any kind of ‘quality of life’ financially. But E like G is so unpredictable health wise it would be impossible to hold down a job. Also the constant feeling of being ‘on edge’ and wondering when next crisis is going to happen can break the strongest of Carers. The ‘grey’ area and the ‘watchful waiting’ too when one does not quite know if things are going to progress as in an infection for example.

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Day centres (all closed down now) were brilliant because the carer could relax knowing that whatever happened, the staff were trained and could cope.

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I suppose for me the issue is that E is in denial. He does not think he needs a carer. He would not go to a Day Care Centre because he would say that everyone was beneath him intellectually. My only way forward is to push that he is becoming a danger to himself and needs 24/7 care. But yes, I can understand that a Daycare Centre bit like a Nursery would give ‘peace of mind’ if the staff were trained that the caree was safe.

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Thank you so much for completing the survey – we value every single response, and are grateful to carers for taking the time to fill it out. We will bear this feedback in mind for next year’s survey. Every year we receive feedback from carers and this is recorded for next year’s survey so that we can adapt where necessary.

We completely appreciate that not all carers want to work in paid employment or are able to do so. However we also know that many carers would like to combine caring with paid employment and find this increasingly difficult, often resulting in carers giving up work – and this can have a significant impact on income and carers’ ability to plan for the future. Our recent research found that giving up work to care was the biggest reason for poverty amongst carers – this is concerning. We know that support from social care services is vital in allowing people to take a break, and to feel they have a choice in whether they provide care, and how much care they provide.

We are keen to hear from all carers from all different circumstances, and have some questions at the end, for example, for people who are caring for a child as well as adult relative, and people who are jointly providing care, to recognise those particular situations.

Thank you for the feedback @Chris_22081, I have passed it to the Team, I’ve just posted below a response they have kindly shared. Thank you again for taking the time to complete the survey.

Thank you Selina for raising a point about Mental Capacity. It might be helpful to visit: : https://www.nhs.uk/social-care-and-support/making-decisions-for-someone-else/mental-capacity-act/ And although this info is aimed at health and social care professionals, you might find this info about the intentions of LPS of interest: What are Liberty Protection Safeguards? - SCIE
The Court of Protection oversee the MCA. Perhaps you could email them about any concerns. Contact details can be found here: https://www.gov.uk/courts-tribunals/court-of-protection

Sorry Paola - I find that a particularly “woolly” response which says nothing. To respond that “not all carers want to work in paid employment” and then go on to say “carers…find it increasingly difficult resulting in them giving up work” says nothing about how that can be addressed or what suggestions CUK is coming up with to put forward to Government. OF COURSE giving up work causes poverty amongst carers. I get Carer’s Allowance and a further £200 a month from a small private pension - nothing else. Last week a friend was bemoaning having to spend £25,000 refurbishing a house she lets out and it means they would not be able to afford a holiday this year…Pray tell me - What’s a holiday?

With non-responses like the one you posted, it makes me wonder how detached CUK has become from the real world of UNPAID CARERS?

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Surely those of us that CANNOT work outside the home because we are FULL TIME CARERS ie 168 hours a week are the most deserving of CUK’s support?
Early state of caring questionnaires always assumed just one caree, then I pointed out I had FIVE! No extra Carers Allowance though.
We had 16 years without a child free day
Our stubborn disabled elderly parents wouldn’t accept outside help, thinking only of themselves, never considering the impact on us, physically or financially. We saved the state a fortune.
My husband died of a massive heart attack.
I developed cancer.

Do we need a new way of defining carers and how Carers Allowance is paid?

I’ve long said that what carers do IS work and needs to be recognised as such.
The argument that paid carers are more highly trained and better than us is insulting.

How can people caring 24/7 go out to work?!

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I feel you need to understand the situation @selinakylie is in. Her husband clearly has dementia but is undiagnosed and seems to be able to “pull the wool” over medics eyes. From her regular posts on here, she is, I believe, fully aware of ‘making decisions for someone lacking mental capacity’. To suggest emailing the CoP is a waste of time in her case as it would make her situation a LOT worse.

It’s very easy to send links but as few minutes reading her posts on Roll Call Thread would give you much more information.

I am sure you will think I am just being rude to you by posting this, but a lot of us who post regularly provide support and comfort for each other in real constructive ways.

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@Paola_Carers_UK If my research is correct, then ‘moderate atrophy of the frontotemporal lobes’ which was noted back in October 2022 and had worsened in the scan in October 2024 is NOT a sign of natural aging. Also given the falls and the ‘Acute on chronic Brain Heamatoma back in 2013’ plus the years of alcohol abuse there is something called ‘balance of probability’ that suggests there are a lot of red flags and I am probably right.

Unfortunately the Memory Clinic HAD to discharge him back in April 2023 due to him passing the tests. When the physio wrote to his GP in October they tried to re refer but got asked to do the basic memory test which he passed. I would point out that the Physio at the Pulm Rehab Course actually used to work at a Memory Clinic. My point was that services are at breaking point especially in Geriatric and Mental Health. So I hand on heart think that the Memory Clinics do their best NOT to accept referals in many cases as they are so inundated and have such waiting lists. I will try to phone the Admiral Nurses but my experience is not that unusual - the Dementia UK Forum has accentuated this. The whole ‘Mental Capacity’ test is very biased towards ‘benefit of the doubt’ and to a degree I understand this, but it does leave the Carers desperately trying to keep the person and themselves safe. I will be writing to his GP again at some stage too. I have a friend who was a social worker and she says that in situations like this their hands are tied. They literally cannot intervene until a crisis or accident has happened.

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I don’t want to belabour the point, but I think it’s important to tell the story. When Mike was born, he seemed quite ok. We were more worried about Dave, who was nearly 4 and a fairly sickly child as he had asthma (undiagnosed). We were used to rough nights. But as Mike got older, life became much more challenging. If he napped at all during the day - even for a few minutes - he wouldn’t sleep at all at night. We slept in shifts, each of us taking a few hours to look after him while the other slept. This while holding down full time jobs. Now, those jobs had flexitime, but there were core hours you had to be there for, and there were limits on how “flexible” it was. Excuses for lateness, tiredness, or anything else didn’t count. Most days we were surviving on 3 hours or less of actual sleep. Gill had dark rings round her eyes, to the point where people started to wonder if I’d given her black eyes. If I had dark rings, I didn’t know - I stopped using mirrors.

Any sort of understanding of our situation was along the lines of “we’ve all had sleepless nights.” The last time I was told that, I suggested that they try it for 18 months without a single day’s break. Silence. But no understanding.

As our caring role expanded, there was even less understanding. Eventually, it got to the stage where a back injury and almost constant migraines led to my having to stop working for a few years. I say “stop working.” Full on caring for two parents - one with severe stroke issues, one with mental health issues and severe arthritis - a sister (with learning disabilities, probable autism, and genetic issues that would now be described as “intersex”, as well as a serious heart condition and lung damage). Gill and I were both suffering with stress and related issues. It took four years before I was in a position to start looking for work. A year later I started work at a Carers Centre.

There wasn’t a more carer-friendly place to work. But the stress of the job and the caring situation at home was constant. I coped with it for longer than I should have, but after almost 20 years I recognised that I was fast approaching a wall I was more likely to crash into than to climb. Covid hit first, and for a year I worked from home because of lockdowns. We were unable to recruit for my replacement. Eventually, we got that sorted and after 21 years I took early retirement.

Only now - four years on - is my health more or less improved. My diabetes is more stable, my back is not quite as troublesome because I make fewer demands on it, and my weight is down by about a stone on what it was. There’s still a ton of stress in my life, although most of the people I cared for 25 years ago are no longer with us. I still have three to care for.

Bear in mind that during that last 20 or so years, I was in employment at the one place that “gets” carers - and all of the flexibility that the Trustees had allowed in our policies went far beyond anything written into law, to the point that our HR advisers were telling us we were taking the risk of carers taking advantage.

For most of the time I was manager, the majroity of our staff were carers or former carers, and for six years, all of them. That wasn’t deliberate - it just happened that way. Not one of them took advantage. For my first eight years as manager, our staff turnover was less than 10% a year.

Only funding issues changed that situation.

But I digress.

Even in that environment, caring and working was too much for my health. Politicians do not understand this. Caring and working is the toughest thing you can do, and I’ve done it for most of my life. I don’t know another life.

I’m always tired. Always. Some days are worse than that.

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@Paola_Carers_UK @Michael_CarersUK
FYI
Like my friends here, when I completed the questionnaire I felt there was a definite over focus on work and earning.

I understand Carers UK walks a thin line lobbying the government for change and you may be trying to build evidence to counter the government principle (ref1) of NOT using carers allowance as a ‘Universal basic income’???
BUT until the overpayments scandal(ref2) is resolved ie the carers ‘debt’ due to the DWPs own administrative mistakes, is wiped, even discussing carers working while caring, detracts from the cliff edge £196 earnings limit and the DWP heaping more issues on carers who, as we all know, contribute £184bn (the equivalent of a second NHS budget) ie SAVE the Health and social care government dept money.
My bone of contention is that the most vulnerable carers, who have no choice but to supplement carers allowance working are ALSO being subjected to system failures of the DWP. The government needs to get their own productivity and house in order instead of pursuing/criminalising carers for their mistakes.
Personally, I’d rather see employers and Carers UK focus on that scandal rather than substantiating why carers take up work or not to earn more than carers allowance.

(ref1) Carers allowance petition to increase to level of minimum wage clear statement response from government saying carers allowance will not be levelled with the minimum wage
(Ref2) The Facts Behind An Ongoing Injustice. - by Victoria “Unpaid carers in the UK are being plunged into debt and prosecuted for fraud by the Department for Work and Pensions over its own benefit overpayments.”- Patrick Butler, Social Policy Editor The Guardian. AND press releases statements by Carers UK

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I’d prefer to read that it wasn’t “their own overpayments” but “own gross incompetence” as I understand that errors that should have been flagged up immediately were allowed to continue for years!

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