Strategies for the relief of burden in advanced dementia care-giving

Abstract

This paper is a report of a study conducted to uncover the strategies that women caregivers of relatives with advanced dementia use to rest from care-giving. Respite consists of activities and situations that briefly take caregivers away from their care-giving responsibilities. Qualitative studies are focusing on respite as an outcome and are deepening our knowledge about the experience of caregivers' rest. The strategies that caregivers use to relieve the burden, however, are not fully known. A qualitative approach was used influenced by the work of Charmaz's constructivist grounded theory. Twenty-three female primary caregivers of relatives with advanced dementia participated in semi-structured interviews between November 2006 and March 2009 in Spain. Data collection was guided by the emergent analysis and ceased when no more relevant variations in the categories were found. Taking leave from the life of care-giving is the general strategy that caregivers use to rest from their caregivers selves. The key issue is to be able to connect with a different world from that of care-giving. Three strategies that participants use to leave the life of care-giving follow: (1) Connecting with one's own life, (2) building moments of life in common with the sick relative and (3) keeping in touch with care-giving. To have respite from care-giving implies distancing oneself from the care-giving identity and reveals the caregiver's need for alternative selves to have true breaks from caring. Nurses are in a unique situation to foster respite as an inner experience.