Stefania Kalampokini1, Adrianus L A J Hommel2, Stefan Lorenzl3,4,5, Joaquim J Ferreira6, Wassilios G Meissner7,8,9,10, Per Odin11, Bastiaan R Bloem2, Richard Dodel12,13, Anette-Eleonore Schrag1. 1. UCL Queen Square Institute of Neurology, 61554University College London, United Kingdom. 2. Department of Neurology, Donders Institute for Brain, Cognition and Behavior, 6029Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands. 3. Institute of Nursing Science and Practice, 162199Paracelsus Medical University, Salzburg, Austria. 4. Interdisziplinäres Zentrum für Palliativmedizin und Klinik für Neurologie Universität München-Klinikum Großhadern, Munich, Germany. 5. Department of Neurology, Agatharied Hospital, Hausham, Germany. 6. Instituto de Medicina Molecular 37809Universidade di Lisboa, Lisboa, Portugal. 7. Service de Neurologie, CHU de Bordeaux, Bordeaux, France. 8. Institut des Maladies Neurodégénératives, 27086University de Bordeaux, Bordeaux, France. 9. Department of Medicine, University of Otago, Christchurch, New Zealand. 10. New Zealand Brain Research Institute, Christchurch, New Zealand. 11. Department of Neurology, 59568Lund University Hospital, Sweden. 12. Department of Geriatric Medicine, University Duisburg-Essen, Germany. 13. Department of Neurology, Philipps-University Marburg, Germany.
Abstract
BACKGROUND: Patients in the late stages of parkinsonism are highly dependent on others in their self-care and activities of daily living. However, few studies have assessed the physical, psychological and social consequences of caring for a person with late-stage parkinsonism. PATIENTS AND METHODS: Five hundred and six patients and their caregivers from the Care of Late Stage Parkinsonism (CLaSP) study were included. Patients' motor and non-motor symptoms were assessed using the UPDRS and Non-motor symptom scale (NMSS), Neuropsychiatric inventory (NPI-12), and caregivers' health status using the EQ-5D-3 L. Caregiver burden was assessed by the Zarit Burden Interview (ZBI). RESULTS: The majority of caregivers were the spouse or life partner (71.2%), and were living with the patient at home (67%). Approximately half of caregivers reported anxiety/depression and pain/discomfort (45% and 59% respectively). The factors most strongly associated with caregiver burden were patients' neuropsychiatric features on the total NPI score (r = 0.38, p < 0.0001), total NMSS score (r = 0.28, p < 0.0001), caring for male patients and patients living at home. Being the spouse, the hours per day assisting and supervising the patient as well as caregivers' EQ-5D mood and pain scores were also associated with higher ZBI scores (all p < 0.001). CONCLUSION: The care of patients with late stage parkinsonism is associated with significant caregiver burden, particularly when patients manifest many neuropsychiatric and non-motor features and when caring for a male patient at home.
BACKGROUND: Patients in the late stages of parkinsonism are highly dependent on others in their self-care and activities of daily living. However, few studies have assessed the physical, psychological and social consequences of caring for a person with late-stage parkinsonism. PATIENTS AND METHODS: Five hundred and six patients and their caregivers from the Care of Late Stage Parkinsonism (CLaSP) study were included. Patients' motor and non-motor symptoms were assessed using the UPDRS and Non-motor symptom scale (NMSS), Neuropsychiatric inventory (NPI-12), and caregivers' health status using the EQ-5D-3 L. Caregiver burden was assessed by the Zarit Burden Interview (ZBI). RESULTS: The majority of caregivers were the spouse or life partner (71.2%), and were living with the patient at home (67%). Approximately half of caregivers reported anxiety/depression and pain/discomfort (45% and 59% respectively). The factors most strongly associated with caregiver burden were patients' neuropsychiatric features on the total NPI score (r = 0.38, p < 0.0001), total NMSS score (r = 0.28, p < 0.0001), caring for male patients and patients living at home. Being the spouse, the hours per day assisting and supervising the patient as well as caregivers' EQ-5D mood and pain scores were also associated with higher ZBI scores (all p < 0.001). CONCLUSION: The care of patients with late stage parkinsonism is associated with significant caregiver burden, particularly when patients manifest many neuropsychiatric and non-motor features and when caring for a male patient at home.
Authors: Lukas Kellermair; Alexandra Fuchs; Christian Eggers; Petra Schwingenschuh; Mariella Kögl; Franz Fellner; Thomas Forstner; Stephanie Mangesius; Michael Guger; Gerhard Ransmayr Journal: J Neural Transm (Vienna) Date: 2021-07-22 Impact factor: 3.575