Journal
JOURNAL OF GERIATRIC PSYCHIATRY AND NEUROLOGY
Volume 35, Issue 1, Pages 110-120Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/0891988720968263
Keywords
late-stage parkinsonism; caregiver burden; neuropsychiatric; non-motor symptoms
Categories
Funding
- European Commission (Joint Programme-Neurodegenerative Disease Research European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases) through (Economic and Social Research Council) [ES/L009250/1]
- European Commission (Joint Programme-Neurodegenerative Disease Research European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases) through (BMBF, Marburg, Germany) [01ED1403A]
- European Commission (Joint Programme-Neurodegenerative Disease Research European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases) through (Munich, Germany) [1ED1403B]
- European Commission (Joint Programme-Neurodegenerative Disease Research European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases) through (Bordeaux, France) [ANR-13-JPHC-0001-07]
- European Commission (Joint Programme-Neurodegenerative Disease Research European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases) through (Lisbon, Portugal) [HC/0002/2012]
- European Commission (Joint Programme-Neurodegenerative Disease Research European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases) through (Lund, Sweden) [HC-559-002]
- European Commission (Joint Programme-Neurodegenerative Disease Research European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases) through (Nijmegen, Holland) [733051003]
- National Institute for Health Research UCL/UCLH Biomedical Research Centre
- Groenhuysen organization
- Stichting Beroepsopleiding Huisartsen
- Agence Nationale de la Recherche (ANR) [ANR-13-JPHC-0001] Funding Source: Agence Nationale de la Recherche (ANR)
- Fundação para a Ciência e a Tecnologia [JPND-HC/0002/2012] Funding Source: FCT
- ESRC [ES/L009250/1] Funding Source: UKRI
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Caring for patients with late-stage parkinsonism is associated with significant burden on caregivers, especially when patients exhibit multiple neuropsychiatric and non-motor symptoms, and when caring for male patients 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.
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