Caregiver burden--a critical discussion

Abstract

Currently, 15%, 12.8% and 17.1% of the Canadian, American and European populations, respectively, are 65 years or older. Due to aging-related disabilities, elderly individuals will require support from family members while in the community. Annually, family caregivers save the Canadian and American healthcare systems $25 billion and $350 billion, respectively. However, to maintain the important role they play, caregivers' experiences must be investigated in order to provide appropriate support. Despite the fact that 'caregiver burden' is preponderantly used as an indicator of the caregiving experience, much disagreement remains on what the term entails and how it should be utilized. This paper endeavors to critically discuss the concept of 'caregiver burden', its use in the literature and the implications this has for future research and clinical practice. The vagueness derived from the various 'caregiver burden' definitions limits the term's relevance to policy-making and clinical practice. Additionally, much of the literature on 'caregiver burden' is not theoretically framed, which reduces the conceptual clarity of the term. Quantitative measures are largely used to investigate 'caregiver burden', which can sometimes fail to capture contextual features that are relevant to caregiving outcomes (e.g., culture). Stress theory and role theory are recommended as guiding frameworks for future research that investigates 'caregiver burden'. Future research on 'caregiver burden' would also benefit from integrating qualitative and quantitative approaches into mixed method designs in order to gain a holistic understanding of the concept.