Caregiver Burden in Late-Stage Parkinsonism and Its Associations

Research output: Contribution to journalArticle


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.


  • Stefania Kalampokini
  • Adrianus L.A.J. Hommel
  • Stefan Lorenzl
  • Joaquim J. Ferreira
  • Wassilios G. Meissner
  • Per Odin
  • Bastiaan R. Bloem
  • Richard Dodel
  • Anette Eleonore Schrag
External organisations
  • University College London
  • Radboud Institute for Health Sciences
  • Paracelsus Private Medical University of Salzburg
  • University Hospital Munich
  • University of Lisbon
  • Centre Hospitalier Universitaire de Bordeaux
  • University of Bordeaux
  • University of Otago
  • Skåne University Hospital
  • University of Duisburg-Essen
  • Philipp University of Marburg
  • Hospital Agatharied
  • New Zealand Brain Research Institute
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Public Health, Global Health, Social Medicine and Epidemiology


  • caregiver burden, late-stage parkinsonism, neuropsychiatric, non-motor symptoms
Original languageEnglish
JournalJournal of Geriatric Psychiatry and Neurology
Publication statusE-pub ahead of print - 2020 Oct 23
Publication categoryResearch
Externally publishedYes