Preparedness for Death: How Caregivers of Elders with Dementia Define and Perceive its Value

Abstract

Purpose: The purpose of this study is to ascertain how bereaved caregivers of a family member who died from a dementiarelated diagnosis (a) define preparedness and (b) perceive its value. Design and Methods: Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Results: Only one third (n = 10) of caregivers interviewed were prepared for the death, and the majority who were prepared were enrolled in hospice. Five primary themes revealed ways that caregivers define various domains of preparedness: (i) accepting reality; (ii) knowing death is near; (iii) getting your "house in order"; (iv) saying "what you need to say"; and (v) giving "permission" to die. The majority (87%) believed that it is important for caregivers to be prepared, and the value of preparedness was exemplified in five domains reflecting the benefits of being prepared. Implications: The results support further attention to the development and testing of interventions to address the unmet needs of caregivers of family members with dementia to help prepare them for the death in a variety of contexts.