Shaping debate on religion in public life.

Carers under pressure

18 Jan 2019

William Temple Scholar Gill Reeve highlights the challenges for social care ahead of the government’s Green Paper on the issue, raising specific concerns about people in our communities living with dementia and the relatives who care for them.

Like so many people in the UK, I am a carer for an elderly parent with dementia who is struggling to maintain independent living. As dementia increasingly clouds my mum’s thinking and memory, I am drawn into a disorientating world where reality and fiction are blended into a rather bizarre new narrative of life. There are funny moments, such as when our 18-year-old son introduced his new girlfriend and my mum exclaimed ‘oh, have you brought your mum to see me today?’. But there are also anxious times, such as when she disappeared from her bungalow and after some hours was found by the police, lost and upset.

We all know that dementia is on the rise, but the statistics are still astonishing. In 2015 it was estimated that there were 850,000 people living with dementia. The King’s Fund predicts that by 2030 the population aged 75 and over will have doubled resulting in an 80% rise in dementia to nearly 2 million people. The impact of these changes on society will surely be immense and it is difficult to see how families and communities can absorb these escalating needs. Currently, two thirds of people with dementia live at home, supported by about 670,000 unpaid carers. In total, across all care needs, there are five and a half million carers in England; 110,000 carers are themselves aged over 85; and one in five people aged 50-64 years are carers.

The impact of caring for someone with dementia may be particularly significant for the working lives of 50 to 64-year olds, as many will be caring for parents with dementia. Recent government research on carers found that only 19 percent of carers had been able to maintain full-time employment; 34 percent had reduced working hours to provide care and 47 percent had left work altogether to provide care. Many people in their 50s are now also supporting adult children living at home due to the unaffordable rental market or unemployment, and the additional pressures of caring for someone with dementia may result in rising financial hardship in this age bracket. These social changes are set in the wider context of austerity and ongoing cuts to local authority budgets, that continue to strip back support for people at a local level. According to the King’s Fund, ‘between 2009/10 and 2015/16, spending by councils on social care per adult resident fell by 11% in real terms, and the number of people receiving publicly funded social care services fell by 400,000’. In the city of Liverpool, where I work, the council estimates that between 2010 and 2020, the core grant from the Government will have been cut by two-thirds: some £444 million. Joe Anderson (Mayor of Liverpool) warns that the council is struggling to protect vital social care services, and that this situation—for one of the most deprived cities in the UK—just isn’t sustainable.

Few would disagree that our current system of social care is unsustainable; its breakdown can be seen in the fact that, ‘at least one quarter of acute hospital beds are occupied by people with dementia, many of whom would not need to be there were it not for their dementia’. The King’s Fund report warns that, ‘doing nothing is not a safe option,’ given that the whole system is at a tipping point, and yet the Government’s Green Paper on Social Care—originally due in the summer of 2017—has been repeatedly delayed and is now due ‘at the first opportunity in 2019’. The slow response is baffling given the urgency of the current situation and the challenges on the near horizon. A Briefing Paper issued in December 2018 suggests that the Green Paper will ‘include a focus on unpaid care and how our society supports carers as a vital part of a sustainable health and social care system’. The Government is also reviewing how to provide carers with more information and technology to support their caring and ‘to identify and promote creative and cost-effective models that look beyond statutory services to develop carer friendly communities’. These statements concern me as they seem to suggest that the solution is to get unpaid carers to work more effectively to uphold an unsustainable and broken system. Given the enormous contribution that communities and carers are already making, I wonder what ‘society’ the Government is envisioning when it looks to ‘society’ to solve the problems. There seems to be a failure to grasp the fact that society is under pressure and is made up of the many carers who are already working hard to support neighbours, family and friends.

The system cannot be ‘fixed’ by piling more pressure on carers; it needs a systemic overhaul and the Government needs to be prepared to put in a very significant financial investment in order to increase practical support for people living at home with dementia and to provide the respite and day care provision that are so vital for carers. I hope the Green Paper grapples with the real challenges people with dementia and their families face. But if it doesn’t, then what will be our response? An inspiration is found, perhaps, in recent news that three women (supported by Child Poverty Action Group) have successfully challenged the government in the high court on universal credit and caused a significant change in policy. This has arguably been the climax of a sustained and collaborative protest by many, including the Church. It demonstrates that change is possible, through perseverance and by uniting together around a common cause. Perhaps it is time for the Church, in collaboration with other partners, to ‘turn up the volume’ on concerns about social care, highlighting the pressing needs of people living at home with dementia and the families who care for them.

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