Profile of caregivers of Parkinson’s disease patients and burden measured by Zarit Scale Analysis of potential burden-generating factors and their correlation with disease severity

Abstract

Parkinson’s disease (PD) promotes burden among patients and caregivers.Objective:To analyze whether disease severity (UPDRS and Karnofsky index), total disease duration, patient cognitive status (MMSE), presence of other diseases, patient age, socioeconomic conditions (ABEP2015), living together with patient, total time caregiving, weekly hours of care and presence of assistance from other caregivers are correlated with, and influence statistically, the degree of caregiver burden measured by the Zarit Burden Interview (ZBI).Methods:After ethics Committee approval, patients and respective caregivers were recruited. Following evaluation with the proper scales, all data were submitted to Pearson’s correlation method and multivariate linear regression analysis (ANOVA).Results:A total of 21 patients and respective caregivers were evaluated. 72% (N=15) of caregivers reported burden. One third of caregivers reported a moderate or severe level of burden. A cause-effect relationship could not be established by the statistical method adopted, but disease severity measured by the UPDRS was the sole variable showing statistically significant moderate positive Pearson’s correlation with ZBI (r=0.48, for p<0.05). On ANOVA, however, no independent variable had a statistically significant impact on ZBI scores.Conclusion:Despite our conflicting results, optimization of the available treatment, with better control of PD severity, can be considered an important element to effectively achieve the goal of reducing burden among caregivers.

The Parkinson’s Real-World Impact Assessment (PRISM) Study: A European Survey of the Burden of Parkinson’s Disease in Patients and their Carers

“…Answers are scored 0 for 'never', 1 for 'rarely', 2 for 'sometimes', 3 for 'quite frequently' and 4 for 'nearly always', with the total scores ranging from 0-88 (0-20, little or no burden; 21-40, mild to moderate burden; 41-60, moderate to severe burden; 61-88, severe burden [20]). The ZBI has been validated for use in all of the languages used in PRISM.…”

Parkinson's Disease Caregiver Strain in Singapore

“…Table 4 summarizes data from our evaluation of key recent international studies of PD caregiver strain. The results show world-wide data demonstrating that care-giver strain is challenging and common, with many shared features between south-east Asia and other regions of the globe, as seen in the world-wide literature ( 40 – 79 ).…”

“…Regardless of geographical, cultural, and geopolitical differences, caregiver strain in PD is a major problem world-wide and correlates with disease severity ( 40 – 79 ). Our study showed that most south-east Asian PD caregivers are family members.…”

Saturdays-in-Motion: Education and Empowerment through an Interdisciplinary Team Approach for Parkinson’s Disease in Cali-Colombia

“…Being a part of a group and sharing experiences could have more benefits than individual-based activities [ 23 ]. Accordingly, the clinical community approach might be beneficial for SIM PD patients because they have reported a positive impact on their social activities and emotional well-being improving their self-confidence [ 24 ]. Moreover, clinical experts talked about the clinical staff–patient relationship in SIM.…”

“…PD patients answered that their QoL and knowledge about PD symptoms are directly related to their QoL (87.5%). As shown in the literature [ 24 , 26 – 28 ], the enhancement in QoL is frequently reached through activation and education empowerment. The main reason may be that the patients and their caregivers gain control over their own lives and increase their capacity to recognize, consult opportunely, and solve the issues that they often acknowledged as important.…”