Family caregiving and dementia: stresses, satisfactions and mediating factors in taking on and continuing in the caring role

Rolleston, Margaret (1999). Family caregiving and dementia: stresses, satisfactions and mediating factors in taking on and continuing in the caring role. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.0000e28d

Abstract

Background and aims

The predominant focus of research into family caregiving and dementia has been on the stresses of caring. This project aimed to look at both the stresses and satisfactions derived from caring for a close family member with dementia, and to explore mediating factors in the decision to take on and continue in the caring role.

Design and participants

A two part, non-experimental design was used. Qualitative methods were used to look at the subjective experiences of two groups of carers, 5 spouse/partners and 6 adult child carers. Quantitative data were obtained from a postal survey of 115 people from a clinical service.

Measures

Data were collected from semi-structured interviews and from standardised questionnaires on mood state and on the stresses and rewards of caring.

Results

The main stresses for carers were related primarily to emotional and relationship factors and to practical restrictions imposed by the caring role. The main satisfactions derived from caring were also related to emotional and relationship factors, including the well-being of the care recipient. For many carers the role had evolved over time and some felt they had not made an informed decision in taking on care.

Implications

An instrumental approach to the effects of caring may be less helpful than focusing on the carers' goals and the extent to which they perceive themselves as achieving these.