The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia

Objective: Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia. Method: This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed. Results: Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships. Significance of results: An understanding from bereaved caregivers' perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.