Older carers: why SHA should get involved

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There is a silent and largely-ignored army of 1.2 million people over 65 in the UK providing unpaid care to another person. The size of the army is growing, the pressures are increasing while support from the state is being withdrawn. Our society cannot function without the support of older unpaid carers and yet they are increasingly being asked to function without the support of society. A crisis is waiting to happen.

Carers provide unpaid care by looking after an ill, older or disabled family member, friend or partner. Some people find caring a rewarding experience because they are helping someone they love who has perhaps looked after them in the past. But when carers are themselves growing older and more infirm, when there is no other option, when care has to be given 24/7 without respite, when it cuts people off from their friends, the things they like doing and the wider society, and when it comes with financial pressures and debts, it can have a hugely negative impact.

Life expectancy is increasing. The conditions for which older people have traditionally provided  care are changing as people with stroke and Down’s Syndrome, for example, live longer. More older people are looking after even older relatives and many are co-caring; it is not unusual to find a mother of 95 looking after her daughter of 70 who has Alzheimer’s Disease.

Cuts in public spending are having a significant impact on carers in general and on older carers in particular, both as direct users of services and in relations to support for them as carers. Services in the community for older adults have seen the biggest reductions, with £539 million taken out of home and day care alone between 2009/10 and 2012/13. The number of older people receiving publicly funded services fell by 26 per cent (245,855 older adults) over this period.

In addition, there is a crisis among professional carers who are working for low wages in difficult conditions (eg zero hours contracts) and are being stretched to cover the amount of care needed by the growing number of older people, disabled people and severely disabled children and those who are in the workforce have very low wages and poor terms and conditions of service (eg zero hours contracts). Restrictions on immigration will worsen labour supply. Funding cuts have also affected voluntary sector organisations, making them, in turn, less able to offer support to carers.

All of this means that the burden of care is increasingly falling on older carers who are increasingly part of the human infrastructure that keeps our society, including our NHS, functioning while being under severe emotional, physical and financial pressure themselves.

Older carers: the facts

Poor co-ordination of data makes the impact of these factors difficult to quantify. But here are some of the facts that we do know.

  • There are 1.2 million carers aged 65 and over in England. Whilst the number of carers has risen by 11% since 2001, the number of those over 65 rose by 35%.
  • The number of carers aged 85 and over grew by 128% in just ten years. A larger proportion of those aged 85 and over in England and Wales were providing unpaid care in 2011 than in 2001; 8.8% in 2011 compared to 5.0% in 2001. Over half of those aged 85 and over who provided care in 2011 were providing 50 or more hours of care in an average week.
  • Nearly half (45%) of arers aged 75 and over are looking after someone who has dementia.
  • The most recent estimates show that the average saving to the state made by each unpaid carer is £18,471 each year. This would mean that the contribution of older carers is over £23.6 billion a year.
  • Two thirds of older carers have long-term health problems or a disability themselves. In the most recent survey of carers by Carers UK, 92% said that caring has had a negative impact on their mental health, including stress and depression. Carers providing round the clock are more than twice as likely to be in bad health than non-carers and this is likely to increase as carers get older.

The loss of earning, savings and pension contributions can mean carers face long-term financial hardship into retirement.

In 2014, half of carers (49%) said they feel society does not think about them at all.

This is a health issue

Nobody could deny that dementia and many other conditions that mean people need care are health issue or that carers are saving the NHS billions. Carers themselves experience physical and mental illness as a result of their care role. Yet much of the dwindling support for carers comes from outside the health system.

The devastating situation for carers is directly related to the current crisis in health and social care. Aside from any considerations of humanity, morality and the duty of the state to look after the most vulnerable people, it is incredibly short-sighted not to provide proper support for the hundreds of  thousands of older people who are providing unpaid care. This is a priceless resource for society which, if it collapses, will bring unimaginable human and economic costs to the NHS as well as the wider society. Conversely, proper investment in support for older carers would bring great rewards. Providing a mandatory assessment which simply quantifies carers’ needs and then telling them that there is no money to meet those needs (the current position for many) is almost worse than no assessment.

The above are some of the reasons why social care should be as much as an issue for SHA as health care and why we need to develop a vision of care that encompasses both. There will always be informal care by people for those they love, but there are some obvious steps that the next Government could take in the health and care arena to improve the situation for carers and for those they care for:

  • immediately reverse the cuts in social care
  • introduce a system of free social care based on agreed definitions of need
  • do away with the artificial distinction between health and social care
  • ensure that information is systematically collected on carers and, separately, older carers, their experiences of caring and its impact on them
  • ensure there is a statutory right to support for carers identified in needs assessments
  • give carers a statutory right to respite from their caring roles
  • provide funding to combat loneliness and isolation among older carers, support for older carers on the death of the person they care for and new opportunities for community involvement following bereavement
  • value professional care workers, who provide support for unpaid carers, and improve their wages and working conditions.