This paper considers how a diagnosis of dementia affects people's planning for future social care needs and associated costs. It addresses the gap in knowledge about how people recently diagnosed with dementia, and their family carers, engage with planning for social care needs that are uncertain in timing and scale. The paper also considers people's attitudes to planning for care that they may need to pay for privately, and what facilitates or hinders acting on such plans. We conducted and undertook thematic qualitative analysis of 39 in-depth interviews with 27 people newly diagnosed with dementia and/or their carers over a two-year period. Topics included current care and support, planning and co-ordinating care, paying for care, and expectations and planning for the future. The research took place in England. Our findings indicate that whilst people recognised they would have future care needs, with associated financial implications, this knowledge did not necessarily translate into actively planning for care or its cost. A key reason that recognition did not translate into action was uncertainty, manifested in three areas: the timescales and trajectory of their dementia and thus need for care; the potential for care needs to change and so negate care planning efforts; and uncertainty over their own capabilities to plan for and access paid-for care, given the perceived complexity of social care and associated financial arrangements. The paper discusses how anticipated regret may affect decision-making and contributes to debates about appropriate professional support for older self-funders with dementia. It suggests the task for those involved in the care of people with dementia is to identify the points and places in the care system where worries about future self-funded care can be addressed, and carers and the people they care for can be prompted and supported to act.

Social care to assist with the activities of daily living is a necessity for many older people; while informal care provided by family members can be a first step to meeting care needs, formal care provided by professionals is often needed or preferred by older people and their families. In England, the number of older people paying for formal care is set to rise, driven by an ageing population and the limited resources of local authorities. Little is known about how older people and their families experience the potentially disruptive processes of deciding upon, searching for and implementing such care, including the financial implications. This paper explores accounts of seeking self-funded social care in England, told by older people and their families in 39 qualitative interviews. These accounts, which we call ‘care chronicles’, include stories about the emergence of care needs and informal care-giving, the search for formal care, including interacting with new systems and agencies, and getting formal (paid) care, either as the recipient or an involved family member. Stories are analysed through the lens of biographical disruption, and analysis demonstrates that such disruptions can occur for older people and their families across the entirety of the care chronicle. Needing, seeking and getting care all have the potential to cause practical and symbolic disruptions; moreover, these disruptions can be cumulative and cyclical, as attempts to resolve or minimise one disruption can lead to new ones. While the concept of biographical disruption is a mainstay in medical sociology, it is less frequently applied to issues relating to social care, and most often takes embodiment as a key focus. This study is novel in its application of the concept to experiences of seeking self-funded care, and in its introduction of the concept of ‘care chronicles’, which invite a longer and broader view of biographical disruptions in the lives of older people with care needs and their families.

The Care Act 2014 gave local authorities in England broad duties around wellbeing, and responsibility to ensure the availability of good quality, personalised social care and support services for people who need them. These responsibilities are for all people needing support, whether that is publicly or privately funded. In exercising their duties, councils have a responsibility for ‘market-shaping’: that is, understanding the supply and demand for care, and the types of services and support needed now and in the future, and steering the market accordingly. Changes to the implementation of the Care Act removed some of the levers that might have brought self-funders into the mainstream of local authority responsibilities. This article draws on sixty-four qualitative interviews undertaken as part of a larger study on market-shaping and personalisation of care, and reflects on the experience of self-funders and the approach to them adopted by local authorities and provider organisations. The findings indicate that self-funders are still largely bystanders to local authority market shaping strategies, despite being both impacted by those strategies and significantly influencing the markets in which they operate.

This paper looks at alternative long-term care (LTC) funding models and options. It analyses six global models and the potential applications to the United Kingdom. The paper provides a demographic overview for each of the six countries to illustrate the increasing global demand for LTC and the funding thereof that is becoming a global critical issue. It examines the approaches each country has taken to address the funding issue with varying degrees of public/private co-operation and partnerships. The authors hope that the lessons learned from these other markets will assist the United Kingdom as they try to come to grips with their growing social care funding issue.

This paper looks at alternative long-term care (LTC) funding models and options. It analyses six global models and the potential applications to the UK. The paper provides a demographic overview for each of the six countries to illustrate the increasing global demand for LTC and the funding thereof which is becoming a global critical issue. It examines the approaches each country has taken to address the funding issue with varying degrees of public/private co-operation and partnerships. The authors hope that the lessons learned from these other markets will assist the UK as they try to come to grips with their growing social care funding issue.