Legacies of caring: the experiences and circumstances of ex-carers

Abstract

Al?StractAlthough there is extensive literature on carers and their care-giving role, the circumstances of carers after care-giving remains largely uninvestigated. This paper documents the socio-economic and psychological legacies of care-giving among 157 ex-carers who were included in a larger national study of the effectiveness and targeting of social security help to carers, which was carried out in 1989. Therefore, the sample included only those whose care-giving responsibilities had been relatively substantial, that is, over 35 hours a week. Survey data covering the employment status and income levels of these ex-carers are presented, as is in-depth interview material on the psychological and social circumstances of a small group of ex-carers. The article concludes that there are long-term negative financial effects of caring, which the social security system appears to ignore. In addition, the psychological, social and physical health consequences of caring may leave some carers poorly equipped for life after care, a situation which might call for the development of support services in the immediate post-care period. Further investigation of the material and non-material circumstances of ex-carers, preferably on a longitudinal basis, should be a priority in health and social care research. Without such research, our knowledge of the costs of caring borne by individuals, and our assessment of the appropriate contributions that should be made by statutory welfare agencies, remains incomplete. Finally, given the prevalence of informal care-giving, our lack of knowledge of the legacies of care-giving limits our understanding of the causes of income and health inequalities between people approaching pension age and older.

Between worlds: the experiences and needs of former family carers

“…These findings echo what has been found in other studies (Haley et al, 2002;McLaughlin & Ritchie, 1994).…”

“…Some literature on the transition to a nursing home placement alludes to lack of recognition of carer expertise by nursing home staff (Allen, 2000;Sandberg et al, 2003). Difficulties experienced by former carers attempting to enter the formal labour force have also been acknowledged (Arksey, 2003;Bond et al, 2003;Hirst, 2005;McLaughlin & Ritchie, 1994).This finding also ties in with earlier Irish work on the caring role. Hynes et al (2008) found that despite the extensive levels of expertise the carer had developed in relation to the care receiver's condition, they felt excluded from the care planning and decision-making process.…”

“…The many aspects of caring that were probed included the decision to take up the caring role and the changes in the caring role over time. Similar to McLaughlin & Ritchie (1994), Lewis & Meredith's data is over twenty years old and so its relevance for contemporary former carers may be questionable. Aneshensel et al (2004) examined survey data from a six-wave longitudinal study of carers (N=291) for those with Alzheimer's disease.…”

“…The existing literature has highlighted the long-term negative financial effects of caring, such as foregoing an income and career advancement as well as limitations on access to pension funds (Lewis & Meredith, 1988;McLaughlin & Ritchie, 1994). As McLaughlin & Ritchie's (1994) data was extracted from a 1989 U.K. national survey, it may differ somewhat from the current situations of former carers. Lewis & Meredith's (1988) book presented carer biographies on daughters who used to care for their mothers and ceased caring in the previous ten years.…”

“…McLaughlin & Ritchie (1994) noted that provisions of the social security system for former carers are inadequate. This is especially relevant due to the lack of recognition of the need for any long-term monetary compensation.…”