Caregiver burden in Parkinson's disease

Instituto de Salud Carlos III, Madrid, Madrid, Spain
Movement Disorders (Impact Factor: 5.68). 05/2007; 22(7):924-31; quiz 1060. DOI: 10.1002/mds.21355
Source: PubMed


Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being.

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Available from: Julián Benito-León
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    • "However, we found no correlation between baseline CBI, motor aspects of daily living, motor severity or motor fluctuations (as assessed by MDS-UPDRS Parts II–IV) in our study, suggesting that caregiver burden in PD patients undergoing DBS is not associated with motor function. Caregiver burden in PD has been consistently associated with the Hoehn and Yahr stage, a measure of disease severity [1] [2] [5] [10] "
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    ABSTRACT: Background: Little is known about caregiver burden in Parkinson disease (PD) patients undergoing brain stimulation (DBS) surgery. Objective: The aim of this exploratory analysis was to evaluate whether caregiver burden improves after bilateral subthalamic nucleus (STN) DBS for PD patients and identify baseline factors associated with caregiver burden. Methods: We analyzed the motor, cognitive and behavioral data of 12 PD patients (9 men/3 women) who underwent bilateral STN DBS and whose caregivers completed the Caregiver Burden Inventory (CBI) both before and approximately 6 months after bilateral STN DBS. Results: Total CBI score did not change from baseline (17.8 ± 10.7) to the 6 month evaluation (18.7 ± 13.1), despite a 29% improvement in the MDS-UPDRS motor score (baseline 40.3 ± 12.1 compared to 28.7 ± 8.4 at 6 months, p = 0.01). Change in total CBI score did not correlate with change in MDS-UPDRS Parts I-IV or MoCA from baseline to 6 months. In post-hoc analyses looking at baseline characteristics that may correlate with caregiver burden, only the disinhibition subscore on the Frontal Systems Behavioral Scale correlated positively with the baseline total CBI score (ρ = 0.763, p = 0.004). Conclusion: Caregiver burden for PD patients (as measured by the CBI) does not change 6 months after bilateral STN DBS, despite significant improvement in motor function. Only baseline behavioral problems, specifically disinhibition, correlated with higher baseline caregiver burden. Clinicians may need to better counsel patients on expectations for caregiver burden after DBS.
    Full-text · Article · Jun 2014 · Journal of Parkinson's Disease
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    • "In this selected cohort of PWE undergoing video-telemetry and their caregivers, we identified the following: (a) epilepsy is associated with modest degree of burden to the caregiver, which is overall comparable to burden from other chronic neurologic conditions reported in the literature; (b) the number of AED, the patient's neuropsychological state, the patient's quality of life, and caregiver education are associated with caregiver burden; and (c) caregiver burden has a negative impact on caregiver health-related quality of life. As illustrated in Table 2, regardless of differences in the pathophysiology of other neurological disorders and methodological variability in their research, the identified magnitude of caregiver burden in epilepsy in our study is overall comparable to other neurological conditions where similar instruments were administered, including stroke [7], Alzheimer's disease [8], Parkinson's disease [9], multiple sclerosis [10], amyotrophic lateral sclerosis [11], and traumatic brain [12] or spinal cord injury [13]. In addition to the chronicity seen in those neurological conditions, epilepsy can often start much earlier in life; it is characterized by a paroxysmal course that introduces the unique strain of unpredictability and it is related to high grade of stigmatization . "
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    ABSTRACT: Aim. Caregiver burden (CB) in epilepsy constitutes an understudied area. Here we attempt to identify the magnitude of this burden, the factors associated with it, and its impact to caregiver quality of life (QOL). Methods. 48 persons with epilepsy (PWE) underwent video-EEG monitoring and their caregivers completed questionnaires providing demographic, disease-related, psychiatric, cognitive, sleep, QOL, and burden information. Results. On regression analysis, higher number of antiepileptic drugs, poorer patient neuropsychological performance, lower patient QOL score, and lower caregiver education level were associated with higher CB. Time allocated to patient care approximated but did not attain statistical significance. A moderate inverse correlation between CB and caregiver QOL physical component summary score and a stronger inverse correlation between CB and caregiver QOL mental component summary score were seen. Conclusion. In a selected cohort of PWE undergoing video-EEG monitoring, we identified modest degree of CB, comparable to that reported in the literature for other chronic neurological conditions. It is associated with specific patient and caregiver characteristics and has a negative effect on caregiver QOL.
    Full-text · Article · Apr 2014
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    • "CB refers to the stress and impact of looking after a relative and refers to the physical, mental, and socioeconomic problems that caregivers may encounter [6]. There is a significant correlation between increasing CB and a reduction in a caregiver's QoL [7] and level of depression [8]. Research has shown that PD caregivers have more psychological distress than the general population [9]. "
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    ABSTRACT: Parkinson's disease imposes significant demands not only on patients but also on those people living and caring for them, who often have a reduction in their quality of life. The factors that may ameliorate these effects, such as an individual's personality, are not understood. Therefore, the aim of this study was to look at the relative contribution of caregiver personality on their quality of life, specifically attempting to identify those traits, which may be protective or harmful. Two hundred and seventy-four caregivers of patients with Parkinson's disease were included in this study. Caregivers were given questionnaires to complete, including the Big Five Inventory and the World Health Organisation Quality of Life BREF version. Univariate correlations demonstrated that depression and anxiety were the largest predictors of reduced quality of life amongst caregivers. However, after controlling for these potential confounds, conscientiousness was associated with enhanced psychological quality of life and openness positively predicted benefits in the environmental domain. Neuroticism was associated with reduced quality of life in the psychological domain. Thus, screening for neuroticism may help identify those caregivers who would benefit from intervention strategies, which could in the long term help reduce the need for nursing home placement of Parkinson's disease patients.
    Full-text · Article · Aug 2013
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