Caregiver Burden in Late-Stage Parkinsonism and Its Associations
(2022) In Journal of Geriatric Psychiatry and Neurology 35(1). p.110-120- 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... (More)
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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- author
- Kalampokini, Stefania ; Hommel, Adrianus L.A.J. ; Lorenzl, Stefan ; Ferreira, Joaquim J. ; Meissner, Wassilios G. ; Odin, Per LU ; Bloem, Bastiaan R. ; Dodel, Richard and Schrag, Anette Eleonore
- publishing date
- 2022
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- caregiver burden, late-stage parkinsonism, neuropsychiatric, non-motor symptoms
- in
- Journal of Geriatric Psychiatry and Neurology
- volume
- 35
- issue
- 1
- pages
- 110 - 120
- publisher
- SAGE Publications
- external identifiers
-
- scopus:85093936286
- pmid:33094677
- ISSN
- 0891-9887
- DOI
- 10.1177/0891988720968263
- language
- English
- LU publication?
- no
- id
- 97d67b12-073c-4752-b535-7d3c69abb24b
- date added to LUP
- 2020-11-12 13:52:33
- date last changed
- 2024-08-08 04:45:22
@article{97d67b12-073c-4752-b535-7d3c69abb24b, abstract = {{<p>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.</p>}}, author = {{Kalampokini, Stefania and Hommel, Adrianus L.A.J. and Lorenzl, Stefan and Ferreira, Joaquim J. and Meissner, Wassilios G. and Odin, Per and Bloem, Bastiaan R. and Dodel, Richard and Schrag, Anette Eleonore}}, issn = {{0891-9887}}, keywords = {{caregiver burden; late-stage parkinsonism; neuropsychiatric; non-motor symptoms}}, language = {{eng}}, number = {{1}}, pages = {{110--120}}, publisher = {{SAGE Publications}}, series = {{Journal of Geriatric Psychiatry and Neurology}}, title = {{Caregiver Burden in Late-Stage Parkinsonism and Its Associations}}, url = {{http://dx.doi.org/10.1177/0891988720968263}}, doi = {{10.1177/0891988720968263}}, volume = {{35}}, year = {{2022}}, }