Caregiver Burden in Late-Stage Parkinsonism and Its Associations

ORCID
0000-0003-4541-5384
Affiliation
UCL Queen Square Institute of Neurology,University College London , United Kingdom
Kalampokini, Stefania;
Affiliation
Department of Neurology, Donders Institute for Brain, Cognition and Behavior,Radboud University Nijmegen Medical Centre , Nijmegen, the Netherlands
Hommel, Adrianus L. A. J.;
GND
121019217
ORCID
0000-0002-1165-0821
Affiliation
Institute of Nursing Science and Practice,Paracelsus Medical University , Salzburg, Austria
Lorenzl, Stefan;
ORCID
0000-0003-3950-5113
Affiliation
Instituto de Medicina MolecularUniversidade di Lisboa , Lisboa, Portugal
Ferreira, Joaquim J.;
ORCID
0000-0003-2172-7527
Affiliation
Service de Neurologie, CHU de Bordeaux, Bordeaux, France
Meissner, Wassilios G.;
Affiliation
Department of Neurology,Lund University Hospital , Sweden
Odin, Per;
GND
1258799499
ORCID
0000-0002-6371-3337
Affiliation
Department of Neurology, Donders Institute for Brain, Cognition and Behavior,Radboud University Nijmegen Medical Centre , Nijmegen, the Netherlands
Bloem, Bastiaan R.;
GND
140826114
ORCID
0000-0003-2044-6299
Affiliation
Department of Geriatric Medicine, University Duisburg-Essen, Germany
Dodel, Richard;
Affiliation
UCL Queen Square Institute of Neurology,University College London , United Kingdom
Schrag, Anette-Eleonore

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.

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