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Retirement on hold for unpaid carers

Most of us dream of a retirement when we can put our feet up, live stress free and take up that activity or hobby we had never before had time to do.

For an ever increasing number of people, however, this dream falls flat when someone close to them has a long term illness, disability or is struggling with drugs and/or alcohol use.

Today Carers Trust launched a new report – Retirement on hold (PDF, 406KB) – supporting older carers. The report sets out the issues older carers told us they faced, and makes recommendations to ensure older carers get the vital support they need now and in the future.

Carers Trust are calling on local and central government to ensure the growing numbers of older carers are well supported and are considered a priority when planning services for the future; after all they have given up their well-earned retirement and are increasingly at the sharp end of the social care funding gap.

The growing population of older carers

It is widely recognised that we have an ageing population, people are living longer and often with multiple long term health conditions.

Alongside the growing numbers of older people with poor health, we have a growing population of older carers who are looking after them. The number of carers aged 85 and over grew by 128% in the last decade (Carers UK and Age UK, 2015).

As we get older we feel increasingly tired, and may develop our own age-related health problems.

Under normal circumstances we would slow down, take a rest in the afternoon, sleep late and generally take it easy. This is not possible for the growing numbers of older carers who say they are exhausted.

“When I was at work and was sick I could take time off and rest. That’s not possible now, I have to haul myself out of bed to take care of my mum.”

“I have worked all my life, but this is the hardest job I have done. I never dreamt I would be doing these things for my wife. I want to do it but it I must admit it was a steep learning curve, I am 90 now and have had to learn new skills to care.”

Campaigning for older carers

Over the past year, Carers Trust has been working to increase awareness of the issues faced by older carers, and campaigning to ask for a better deal for older carers when it comes to offering them vital support.

Carers Trust has run two successful actions as part of the campaign. The first action saw carers and supporters contact over 300 local councillors to ask for improved coordination of care services, to prevent them having to attend multiple appointments and make multiple phone calls.

In the second action, nearly 250 carers and supporters contacted their local Clinical Commissioning Group and Health and Wellbeing Board to ask for a better deal when it comes to carers’ health.

We must prioritise carers’ health

It is well recognised that caring is a risk factor when it comes to our own health. We must prioritise carers’ health, make it easier for them to take time out to attend appointments and keep up activities.

After all, if a carer is forced to stop caring because they are unwell, the person they care for is likely to need crisis or unplanned care, costing the health and social care systems time and money that could have been better used for prevention.


Blog by Louise Marks, Dementia Policy and Development Officer, Carers Trust

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February 7, 2017 - Posted by | campaigning, Health, Isolation, Older carers, Social Care

5 Comments »

  1. I have been a CARER for 28 years and have lived through government reforms and changes both national and local. None of these efforts have been for the true benefit of the VULNERABLE DISABLED CARERS. All the government has wanted to do is CUT COSTS AND USED UNPAID CARERS AS A LABOUR FORCE TO RUN A CARING SERVICE WITHOUT COST OR THOUGHT.
    Until CARERS groups wake up to the reality of trying to help governments is a waste of time. As CARERS we need to fight back and make the government and the DWP realise that we have real needs that need real and honest support. AND MOST IMPORTANTLY IT WILL COST MONEY. NOT EMPTY WORDS AND HOLLOW COMMITMENT TO REAL CARER SUPPORT.

    Comment by Taras Kurylak | February 7, 2017 | Reply

    • So agree with this. Feel like a ghost as all human rights go out of the window; you’re considered demented yourself if you dare to flag up initiatives like our local authority’s ‘mood matters’ 6 x 2 hrs course – 12 hours of precious NHS time given over to speed-training unpaid psychiatric nurses & teaching you how to ‘address your unhelpful thoughts’ (presumably such as ‘how the !*#$ do I find the 24hrs care time & expense attending this course would require?’). Any LA ‘carer support’ actually proved damaging both to me & cared-for elderly spouse as it just ate up valuable time & precipitated a further stroke admission for spouse. Fed up of not being a Real Person. Well said, Taras – we need a fight; possibly class action under the Modern Slavery Act or private prosecutions for Misconduct in Public Office where social services deliberately hold back & obfuscate on provision of goods & services?

      Comment by Jane Leitch | February 8, 2017 | Reply

  2. I so agree with all that has been said here . I have cared for and still am careing for my severe learning disabled son for 33yrs. As I was unable to work as he has challenging behaviour I had to rely on my carers allowance. I now have my husband who has severe emphysema and is on oxygen 16hrs a dayI allso have my mother who has dementia to care for .I reached retirement age in November and my carers allowance stopped as Icant have an overlapping benefit which I find very hard to except . I don’t feel recognised as a carer anymore by the powers that be.I Have friends who recieve there pension and have no careing responsabilities and can truly retire. Not so for me. I get respite for my son but the time is now taken up looking after the other two . There must be others in my position but its something I have never seen mentioned or considered.

    Comment by MRS TERESA UPHILL | February 14, 2017 | Reply

    • The government and most people don’t SEE and DON’T want to do anything to change what is being done to the VULNERABLE DISABLED CARERS.
      There will be a time when humanity in this once caring nation will wake up and realise that what they are doing to us today they will do to others/TO YOU.
      GOD HELP US ALL.

      Comment by Taras Kurylak | February 15, 2017 | Reply

  3. I have been caring for my disabled husband for the past three years and it has been a steep learning curve. His left leg was amputated in a AAA operation during which he suffered a heart attack. He has been left with severe COPD and poor kidney function and now relies on a wheelchair. I find that people make all sorts of assumptions. They assume that we receive a mobility allowance. We do not because my husband was 65 when he became disabled. The government has withdrawn this benefit for those over 64. Fortunately, we have our own car without which we would be housebound. It is assumed that I receive a Carer’s Allowance, which I do not, because I was 65 when I started caring for my husband and Carers Allowances stop when you receive your State pension. My husband does now receive a small allowance which helps with the extra costs incurred due to his disability, but this was only after a member of Age Concern helped us to complete the form. We are both graduates yet we were advised not to complete the form ourselves because it is so complicated and unless worded very carefully the allowance can be refused. We have both worked our entire lives and paid all our taxes and we still do, because we both paid into and receive occupational pensions. I am reconciled to the fact that it is I who should be caring for my husband. However, I am becoming so exhausted that it is affecting my own physical and mental health. I would occasionally like to do something for myself, yet when I enquired about the cost of a regular couple of hours respite care I was horrified at the cost. Why are professional carers only paid the basic wage, yet the charge made is three times that amount? I am not asking for the government to give me money to care for my own husband, but I would appreciate being able to access time for myself.

    Comment by Ann Bullon | February 15, 2017 | Reply


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