End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia – A qualitative study

Abstract

Background End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions. Aim To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia. Design Qualitative research including a series of single cases (close family relatives). Methods A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010. Results/Findings Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life. Conclusions Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia.