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Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

Rosqvist, Kristina LU ; Schrag, Anette and Odin, Per LU orcid (2022) In Brain Sciences 12(1).
Abstract

Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (HY) stages IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of... (More)

Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (HY) stages IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of caregiver burden were the most common, i.e., items: “feel guilty if not there” (71% affirmed), “situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, female patient gender (p = 0.007), better cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner (p = 0.022) were associated with better caregiver QoL. Multivariable linear regression analyses identified better cognition (p = 0.004) and female patient gender (p = 0.035) as independently associated with better informal caregiver QoL. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers in late stage PD.

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author
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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Caregiver burden, Informal caregiver, Late stage, Parkinson’s disease
in
Brain Sciences
volume
12
issue
1
article number
111
publisher
MDPI AG
external identifiers
  • scopus:85123527665
  • pmid:35053854
ISSN
2076-3425
DOI
10.3390/brainsci12010111
language
English
LU publication?
yes
id
5fbc6886-557b-495c-9207-2f8c60f4d3ea
date added to LUP
2022-04-08 12:13:44
date last changed
2024-06-10 05:07:12
@article{5fbc6886-557b-495c-9207-2f8c60f4d3ea,
  abstract     = {{<p>Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (HY) stages IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of caregiver burden were the most common, i.e., items: “feel guilty if not there” (71% affirmed), “situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, female patient gender (p = 0.007), better cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner (p = 0.022) were associated with better caregiver QoL. Multivariable linear regression analyses identified better cognition (p = 0.004) and female patient gender (p = 0.035) as independently associated with better informal caregiver QoL. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers in late stage PD.</p>}},
  author       = {{Rosqvist, Kristina and Schrag, Anette and Odin, Per}},
  issn         = {{2076-3425}},
  keywords     = {{Caregiver burden; Informal caregiver; Late stage; Parkinson’s disease}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{MDPI AG}},
  series       = {{Brain Sciences}},
  title        = {{Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease}},
  url          = {{http://dx.doi.org/10.3390/brainsci12010111}},
  doi          = {{10.3390/brainsci12010111}},
  volume       = {{12}},
  year         = {{2022}},
}