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Caregiver Burden in Late-Stage Parkinsonism and Its Associations

Kalampokini, Stefania ; Hommel, Adrianus L.A.J. ; Lorenzl, Stefan ; Ferreira, Joaquim J. ; Meissner, Wassilios G. ; Odin, Per LU orcid ; Bloem, Bastiaan R. ; Dodel, Richard and Schrag, Anette Eleonore (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
; ; ; ; ; ; ; and
publishing date
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
2024-04-17 19:18:38
@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 &lt; 0.0001), total NMSS score (r = 0.28, p &lt; 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 &lt; 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}},
}