Care chronicles: needing, seeking and getting self-funded social care as biographical disruptions among older people and their families

Abstract

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.

A Discrete Choice Experiment of Older Self-Funders’ Preferences When Navigating Community Social Care

“…Finding care has been reported as stressful and upsetting, especially in a context of urgent care needs or where families were struggling to get the right advice at the same time as meeting the demands of work or their caring roles [14]. Research suggests that opportunities for information, advice, and guidance are missed because service users do not feel that local government would assist them in a meaningful way and that local authorities in practice have little incentive or capacity to engage self-funders and their families [15,16]. Self-funders also appear unaware of the potential benefts of advice, such as fnancially planning for care [17].…”