Responsibility

Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life.

Social inclusion is a contested concept that identifies the basis for social membership and valued activities in any society. Within social inclusion assessments, care is often overlooked or perceived to be a risk factor for exclusion and a barrier to inclusion. Drawing on ideas from care theories, the authors argue that social inclusion needs revising to take account of care.

Based on audio diaries and narrative interviews with family carers, this paper suggests care can be understood as an experience of ‘extraordinary normalcy’, meaning that profound shifts in home, relationships and identities take place whilst caring, yet these become part of the normalcy of family life. To maintain and understand a sense of normalcy, our participants utilise professional and technological interventions in the home and draw on notions of responsibility, reciprocity and role-reversal as frameworks for explaining why they continue to care, despite the challenges it brings.

The article discusses the difficulties experienced by young carers and how to develop and strengthen their caregiver skills and experience. It says that young carers are children, adolescents, and younger members of the family below the age of 25 who has become the primary caregiver of the family and takes adult responsibilities in managing the family due to parental absence. It says that due to their young age, most young carers experience psychological and physical stress in their lives, social isolation from their peers, and educational delays.

Using grounded theory methodology, members of nine families with 'young carers' were interviewed to explore their experiences of caring. A dynamic theory of change and adaptation emerged in relation to changes in who cares within families, in external support and in the attitudes of young carers towards caring. Adaptations included becoming used to the way life is, knowing how to care, balancing and trading off, rewarding care, and anticipating future adaptations. A model has been developed to offer an explanation of factors which influence young caring in families.

This Viewpoint, written by Caroline Glendinning at the University of York and David Bell at the University of Stirling, draws on the experiences of other countries to argue that social care is a collective, welfare state responsibility rather than an individual, private responsibility.

Other key points include: 

• social care arrangements in many other countries are equal and universal: everyone is eligible regardless of wealth, and people with similar levels of disability receive care no matter where they live;

This article frames the issues in the Supreme Court case, Nevada Department of Human Resources v. Hibbs, and introduces the articles making up the inaugural symposium of the Law and Women's Studies Program at the University of Cincinnati. Hibbs involved a husband who was trying to get leave under the Family and Medical Leave Act (FMLA) in order to take care of his severely injured wife. The case presents an opportunity to rethink issues of work and family, the legal subordination of women, and the law as an agent for social change, and it was therefore an ideal focus for the symposium.

This paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs.

Increasing proportions of men and women are combining family (including care-giving) and work responsibilities in later life; however, the relationship between multiple role commitments and health at older ages remains unclear.

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement.