Abstract

Although most people with Parkinson’s disease are cared for in the community, little is known about family members’lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers’ lived experiences ofpalliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson’s disease wereinterviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had notbeen fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring forsomeone with Parkinson’s disease not accessing specialist palliative care services. Participants also reflected upon thephysical and psychological impact of caring in the advanced stage of Parkinson’s. A multi-disciplinary team-based approachwas advocated by participants. These findings provide important insights into the experience of caregiving to patientswith Parkinson’s disease in the home at the end-of-life stage. According to palliative care standards, patients and theircarers are the unit of care; in reality, however, this standard is not being met.