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; Bloem, Bastiaan R.; Dodel, Richard; Schrag, Anette

doi:10.1177/0891988720968263

Cited by 23 publications

(33 citation statements)

References 86 publications

(174 reference statements)

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“…Interestingly, this burden was not significantly different between patients in institutional care and outpatient PD patients [30]. Overall, caregiver burden measured by the Zarrit burden inventory showed stable results in several European countries in this study [25,30]. Other studies of different neurodegenerative diseases have reported a significant increase in caregiver burden over time.…”

Section: Longitudinal Trajectory Of the Parkinson's Disease Caregiver Burdensupporting

confidence: 53%

“…A recent international study focused on late-stage PD patients and their caregivers, describing moderate caregiver burden. Interestingly, this burden was not significantly different between patients in institutional care and outpatient PD patients [30]. Overall, caregiver burden measured by the Zarrit burden inventory showed stable results in several European countries in this study [25,30].…”

Section: Longitudinal Trajectory Of the Parkinson's Disease Caregiver Burdenmentioning

confidence: 47%

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One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

et al. 2021

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Parkinson’s disease (PD) is a slowly progressive neurodegenerative movement disorder that leads to impairments in activities of daily living. In addition to reducing patients’ quality of life, this disease also affects caregivers’ well-being. Until recently, caregiver burden was mainly assessed by generic questionnaires, which do not take the characteristics of the chronic disease into consideration. In the case of PD, this issue has been addressed by the introduction of the “Parkinson’s disease caregiver burden” questionnaire (PDCB). Data on longitudinal trajectories of caregiver burden are still missing in the literature. In this study, we assessed the one-year trajectory of caregiver burden by the PDCB as a disease-specific questionnaire. Further, gender-specific aspects of caregiver burden were analyzed by applying a caregiver task questionnaire. PDCB total score (n = 84 patients and caregivers) did not significantly change from baseline (30.4) to one year at follow-up (31.5). No significant difference was detected between female and male caregivers in global burden and-specific caregiver tasks. Our data showed only a mild increase of caregiver burden in the timeframe of one year. Gender-specific differences do not seem to impact-specific caregiver tasks in the presented study population.

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Section: Longitudinal Trajectory Of the Parkinson's Disease Caregiver Burdensupporting

confidence: 53%

Section: Longitudinal Trajectory Of the Parkinson's Disease Caregiver Burdenmentioning

confidence: 47%

One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

et al. 2021

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“…Compared to the literature on late-stage PSP (Schmotz et al 2017 ; Kalampokini et al 2020 ), caregivers in our study reported similar or less severe CB. In agreement with our findings the CLASP study also reported neuropsychiatric and non-motor features to be the leading factors for caregiver burden (Kalampokini et al 2020 ). We were not able to find any data in the literature about CB in early stages of PSP.…”

Section: Discussioncontrasting

confidence: 54%

Caregiver strain in progressive supranuclear palsy and corticobasal syndromes

et al. 2021

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Progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) progress relentlessly and lead to a need for care. Caregiving is often burdensome. Little is known about the course of caregiver burden (CB) in PSP and CBS patients. Longitudinal analysis of CB in family members caring for PSP and CBS patients. Single-center longitudinal pilot study in 68 newly diagnosed patients with probable PSP and CBS (52 Richardson’s syndrome; 1 progressive gait freezing of PSP; 15 CBS). Demographic, educational, occupational parameters, family status, motor functions (UPDRSIII, Hoehn and Yahr Score, Tinetti) and neuropsychological performance (CERAD Plus, Frontal Assessment Battery) were assessed, as well as behavioral and neuropsychiatric impairments (Frontal Behavioral Inventory, Neuropsychiatric Inventory), activities of daily living (ADL) and caregiver burden using the Caregiver Strain Index (CSI), in most patients also the Zarit Burden Interview (ZBI). Patients were followed up every 6 months for up to 2 years. Caregivers reported mild to moderate CB at baseline, which increased by 25–30% in 2 years and was significantly greater in PSP than in CBS. Risk for mental health problems increased over time, especially in female caregivers (depression). Important patient-related factors were apathy, aspontaneity, depression, irritability, disorganization, poor judgment, impairment of language, impairments in ADL, a high educational level of the patient and close family relationship. Behavioral symptoms and impaired ADL are the main patient-related factors of CB in PSP and CBS. CB can be severe and needs to be assessed repeatedly from the time of diagnosis to provide comprehensive support.

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“…This cohort constitutes the Swedish part of the European multicenter Care of Late Stage Parkinsonism (CLaSP) project [ 4 , 12 ]. The current analyses were specific for the Swedish sub-study of the CLaSP project and add quantitative perspectives to already published qualitative data on caregiver burden and QoL in late stage PD [ 10 ] and previously published data on caregiver burden in the international sample [ 13 ].…”

Section: Methodsmentioning

confidence: 99%

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

2022

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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 (H&Y) stage 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)”, “the situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, male 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 male 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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Caregiver Burden in Late-Stage Parkinsonism and Its Associations

Cited by 23 publications

References 86 publications

One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

Caregiver strain in progressive supranuclear palsy and corticobasal syndromes

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

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