Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022.

Caregiver burden is a term that refers to the adverse effect of caregiving on the physical, emotional, social, spiritual, and financial well-being of the caregiver. Caregiver burden is associated with providing care to an individual with a chronic illness or disability, and the unique symptoms of Parkinson disease (PD) can amplify a patient's needs and reliance on others, leading to adverse outcomes for patients and their caregivers. In this scoping review of the literature from January 2017 through April 2022 that included 114 studies, we provide an updated, evidence-based summary of patient and caregiver-related factors that contribute to caregiver burden in PD. We also describe the impact of caregiver stress and burden on caregivers based on qualitative research studies and review recent interventions to mitigate burden. By providing clinical updates for practitioners, this review is designed to improve recognition of caregiver burden in the post-pandemic era and foster the development of targeted interventions to reduce caregiver burden in PD.

Parkinson disease patients' and carepartners' perceptions of palliative care.

INTRODUCTION: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation. METHODS: Using qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed. RESULTS: Five themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients' emotional needs and for carepartners, and for anticipatory guidance to guide future planning. CONCLUSIONS: Despite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.