On this carers rights day, I thought it would be useful to reflect on some of the key arguments in my recently published book, Duties to Care: Dementia, Relationality and Law. This book, which is the latest publication founded on data collected from the dementia project Duties to Care research, explores the experiences of unpaid carers of people with dementia as they navigate the dementia journey from diagnosis to death in the context of contemporary health and social care regulation in the UK.
In Duties to Care, I demonstrate how the current regulatory approach to caring places significant additional pressures on family carers at a time when they are also having to deal with the emotional consequences of loss and grief. Social care in England is regulated through a decentred and privatised model, which makes working out entitlements and accessing support extremely difficult for family carers. The system is riddled with uncertainty, delay, and unfairness. Carers often find navigating the system more difficult than the already challenging task of caring for their loved one. Carers get frustrated with the ‘endless assessments’ they experience; their complaints go unanswered and unresolved; and they feel that they have to reach breaking point before they get any support.
Over the course of the last two decades, carers have emerged and crystallised as a new kind of legal subject. The most recent legislation on social care, the Care Act 2014, gave more carers the right to an assessment of their needs, placing them on a level footing with those they care for. But at the same time, it also placed additional responsibilities on carers, removing those responsibilities from local authorities, and re-privatising care into the family. If a family carer provides the support a person needs, the Care Act 2014 removes the responsibility of that person’s local authority to support those needs (you can find that provision in section 18(7)). As is often the case, recognition by the state brings with it extra regulation, additional surveillance and greater burdens. The other side of this additional responsibility for carers was to be the introduction of a lifetime cap on care costs. This has now been kicked into the political long grass, likely to never be implemented. In the meantime, the existing ‘dementia tax’ on self-funders will continue, where they not only pay for their own care, but cross subsidise the care provided to those who are funded by the local authority.
The government announced recently that there would be a new green paper on care and support for older people by summer 2018. In Duties to Care, I show that dementia care is a relational problem and that solving the social care crisis will therefore require relational solutions. It will be tempting to seek to resolve the care funding crisis through private wealth, but doing so will not address the inherent problems within the current system or those that have created the crisis. The current social care crisis has developed from the complex interaction of fragmented regulation, economic and social privatisation, a devalued labour force, and chronic underfunding. Care is a foundational and essential part of human life. It deserves to be given as much respect and social value as capital growth.