The Lived Experience of Spiritual Well-Being Amongst Informal Caregivers of Persons with Dementia on Palliative Care Living at Home

Title. The Lived Experience of Spiritual Well-Being Amongst Informal Caregivers of Persons with Dementia on Palliative Care Living at Home. Purpose.This study explored the lived experience of spiritual well-being amongst informal caregivers of a person with dementia who were living at home and enrolled in palliative care. Background. Patients with dementia comprise the third leading diagnosis in palliative care patients and many receive informal care from family members. Palliative care improves quality of life in patients and their informal caregivers. However, little is known about spiritual well-being in the setting of caregiving of persons with dementia on palliative care. Thus, making the exploration of this phenomenon necessary. Methods.This study, guided by van Manen’s (1990) theory of interpretation, recruited 10 caregivers through a large healthcare organization in Southern California. The experience of each caregiver was collected through narrative interviews using open-ended questions. The transcribed texts were read and analyzed to interpret the meanings and arrive at a comprehensive understanding of spiritual well-being. Findings. Analysis of the participant’s experience revealed essential themes that included: Isolated from others; Hardships; Awareness; Being connected to the patient; Presence; Trust; Sacrifice; Belonging; Duty; Freedom; Strength; and Dedication. Upon deeper reflection on these themes a description of spiritual well-being in the context of the study’s setting is presented. Significance of Study. Findings from this study suggest that these informal caregivers rely on relationships with self, others, and the Sacred to remain hopeful. An understanding of spiritual well-being by palliative care professionals is important to provide appropriate spiritual guidance. Future research is warranted that examines spiritual well-being from the perspective of bereaved caregivers and the effects of alternative care modalities on caregiver overall health