FAMILY SOLIDARITY AND INFORMAL CARE: THE CASE OF CARE FOR PEOPLE WITH DEMENTIA

• Published in: Bioethics 2012-09, Vol.26 (7), p.361-368
• Main Authors: TER MEULEN, RUUD, WRIGHT, KATHARINE
• Format: Article
• Language: English
• Subjects: Bioethics; Caregivers; Caregivers - ethics; Community; Community Health Services - ethics; Dementia; Dementia - therapy; dementia care; Diseases; Families & family life; Family; Humans; informal care; Meaning; Personal Autonomy; Personhood; Professional-Family Relations - ethics; Social Responsibility; Social Support; Social Welfare - ethics; Sociological theory; Sociology; Solidarity; Welfare
• ISSN: 0269-9702; 1467-8519
• DOI: 10.1111/j.1467-8519.2012.01992.x

ABSTRACT According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role.