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Background: Parkinson's disease (PD) increases patient load and requirements of care. Determining the burden on PD patients' caregivers and associated factors may help to identify methods to reduce caregiver burden. This study investigated the factors associated with caregiver burden among PD patients caregivers., Methods: Eighty-five PD patients and 85 caregivers were included in the study. Zarit Burden Interview (ZBI) was used to measure caregiver burden; the Ways of Coping Scale (WCS) was used for coping; Modified Hoehn-Yahr Staging (MHYS) was used for staging patients. The International Parkinson and Movement Disorder Society Unified Parkinson's Disease Rating Scale (MDS-UPDRS) parts 1 and 3 were used to evaluate non-motor and motor problems. Caregivers' depression and anxiety levels were evaluated with the Beck Depression Inventory and Beck Anxiety Inventory (BAI). Spearmen correlation coefficient was used to evaluate the relationship of variables with the ZBI score, and multiple linear regression analysis was used to determine the predictors of the ZBI score., Results: A positive significant relationship was found between the ZBI score and BAI score, MHYS score, WCS total score, and subscales: keeping to self, seeking refuge in fate, and seeking refuge in supernatural forces. MHYS score, WCS total score, BAI score, and MDS-UPDRS-1 were predictors of the ZBI score., Conclusions: The anxiety levels of caregivers, their ways of coping, and the patient's stage of the disease are important in caregiver burden. Coping ways can be changed to reduce the care burden. Developing psychological interventions for caregivers to change their coping styles can be important., (© 2024 Japanese Psychogeriatric Society.)

Background: This study evaluated the level of burden in pediatric and adolescent atopic dermatitis (AD) patients in Japan, the associated burden on caregivers/families, and whether this burden varied with age., Methods: Data were drawn from the Adelphi Pediatric AD Disease Specific Programme (DSP)™, a cross-sectional survey of physicians and their patients conducted in Japan between July and December 2022. Physicians reported patient demographics, clinical characteristics, disease burden, and current/previous therapies. Patients and/or caregivers reported perceived disease severity and impact of AD, including the Children's Dermatology Life Quality Index (CDLQI) and Dermatitis Family Impact questionnaire (DFI)., Results: Overall, 55 physicians provided data for 537 AD patients aged ≤17. Mean (SD) overall scores for CDLQI, POEM, and DFI were 9.3 (6.3), 8.3 (6.8), and 11.7 (7.2), respectively. Age was associated with higher patient and/or caregiver-reported CDLQI scores, which increased by 0.543 points per year of age (P = 0.01). Patients with severe disease reported a more significant impact on quality of life factors compared with mild patients (P < 0.001). Age was associated with higher caregiver-reported burden, with DFI scores increasing by 0.325 per year (P = 0.01). Physician-reported impact on caregivers showed that age was significantly associated with increased burden on sleep, daily activities, work, and mood (P < 0.05), with disease severity associated with impact across all factors (P < 0.01)., Conclusions: Both increasing age and disease severity were associated with the increased impact of AD on patients and their caregivers. Disease control/modification through appropriate therapeutic intervention at a younger age may relieve the burden of pediatric AD on patients and their families., (© 2024 The Author(s). International Journal of Dermatology published by Wiley Periodicals LLC on behalf of the International Society of Dermatology.)

Purpose: Deinstitutionalization of persons living with mental illness has led to many patients residing in communities with family members and shifting the burden of care and caregiving from hospitals to homes. The aim of the study was to determine the burden on caregivers of patients with schizophrenia at Edward Francis Small Teaching Hospital (EFSTH)., Methods: This was a descriptive cross-sectional study design with a sample consisting of 161 randomly selected caregivers of patients with schizophrenia. The GHQ-12 questionnaire was used to determine the general health status of the caregivers. The caregivers' burden was assessed using the Zarit Burden Scale. The data were collected using the researcher-administered method. The collected data were analyzed with IBM SPSS Version 20 using descriptive statistics, mean differences, and the general linear model (GLM)., Results: The main findings of this study were that caregivers experienced a significantly high level of burden. Most of them experienced high levels of physical (70%), psychological (93.2%), social (78.3%) and financial (55.3%) burdens. Employment status, specifically unemployment status and belonging to the Wolof ethnic group, was a significant predictor of the level of financial burden on the caregivers. Similarly, the total score for social burden was also significantly greater among unemployed caregivers. Educational level was a significant predictor of the total score on the psychological and physical burden scale., Conclusion: The caregivers of patients with schizophrenia at EFSTH are experiencing a high level of burden as a result of their caregiving role, which affects their health, and this calls for urgent intervention., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany.)

Introduction: Neurofibromatosis type 1 (NF1) is a rare genetic disorder, with lack of evidence of disease burden in China. We aimed to describe the economic burden, health-related quality of life (HRQL), and caregiver burden of NF1 patients in China., Methods: We conducted an online cross-sectional survey employing the China Cloud Platform for Rare Diseases, with 223 caregivers of NF1 pediatric patients (patients under 18), and 226 adult patients. Economic burden was estimated using direct and indirect costs related to NF1 in 2021, and the Work Productivity and Activity Impairment Questionnaire: General Health V2.0 (WPAI-GH). HRQL measures included EQ-5D-Y proxy version and PedsQL ™ 4.0 Generic Core Scales (PedsQL GCS) proxy version for pediatric patients, and EQ-5D-5L and PedsQL ™ 3.0 Neurofibromatosis Module (PedsQL NFM) for adult patients. Caregiver burden was estimated by Zarit Burden Interview (ZBI)., Results: For pediatric patients, the average direct cost in 2021 was CNY 33,614 (USD 4,879), and employed caregivers' annual productivity loss was 81 days. EQ-5D-Y utility was 0.880 ± 0.13 and VAS score was 75.38 ± 20.67, with 52.6% patients reporting having problems in "pain/discomfort" and 42.9% in "anxiety/depression." PedsQL GCS total score was 68.47 ± 19.42. ZBI score demonstrated that 39.5% of caregivers had moderate-to-severe or severe burden. For adult patients, average direct cost in 2021 was CNY 24,531 (USD 3,560). Patients in employment reported an absenteeism of 8.5% and presenteeism of 21.6% according to the results of WPAI-GH. EQ-5D-5L utility was 0.843 ± 0.17 and VAS score was 72.32 ± 23.49, with more than half of patients reporting having problems in "pain/discomfort" and "anxiety/depression" dimensions. PedsQL NFM total score was 68.40 ± 15.57., Conclusion: Both pediatric and adult NF1 patients in China had a wide-ranging economic burden and low HRQL, especially in the psychological dimension. Caregivers for NF1 pediatric patients experienced considerable caregiver burden. More attention and support from policymakers and stakeholders are required to relieve NF1 patients' and caregivers' distress., Competing Interests: JZ and QL are current employees of the funders of this study: China Alliance for Rare Diseases (CHARD) and Beijing Society of Rare Disease Clinical Care and Accessibility (BSRDCCA). The funders are non-profit organizations. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Liang, Cao, Suo, Zhang, Yang, Wang, Wang, Wang, Bai, Li, Zheng and Jin.)

Fully elucidating the burden that Lennox-Gastaut syndrome (LGS) places on individuals with the disease and their caregivers is critical to improving outcomes and quality of life (QoL). This systematic literature review evaluated the global burden of illness of LGS, including clinical symptom burden, care requirements, QoL, comorbidities, caregiver burden, economic burden, and treatment burden (PROSPERO ID: CRD42022317413). MEDLINE, Embase, and the Cochrane Library were searched for articles that met predetermined criteria. After screening 1442 deduplicated articles and supplementary manual searches, 113 articles were included for review. A high clinical symptom burden of LGS was identified, with high seizure frequency and nonseizure symptoms (including developmental delay and intellectual disability) leading to low QoL and substantial care requirements for individuals with LGS, with the latter including daily function assistance for mobility, eating, and toileting. Multiple comorbidities were identified, with intellectual disorders having the highest prevalence. Although based on few studies, a high caregiver burden was also identified, which was associated with physical problems (including fatigue and sleep disturbances), social isolation, poor mental health, and financial difficulties. Most economic analyses focused on the high direct costs of LGS, which arose predominantly from medically treated seizure events, inpatient costs, and medication requirements. Pharmacoresistance was common, and many individuals required polytherapy and treatment changes over time. Few studies focused on the humanistic burden. Quality concerns were noted for sample representativeness, disease and outcome measures, and reporting clarity. In summary, a high burden of LGS on individuals, caregivers, and health care systems was identified, which may be alleviated by reducing the clinical symptom burden. These findings highlight the need for a greater understanding of and better definitions for the broad spectrum of LGS symptoms and development of treatments to alleviate nonseizure symptoms., (© 2024 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.)

Hemodialysis (HD) and peritoneal dialysis (PD) treatments impact the economic burden and psychological distress faced by end-stage kidney disease (ESKD) patients and their caregivers. This review aimed to discuss the concept of an economic burden and the economic burden of different treatment options, and to highlight research gaps regarding the scarcity of previous studies relating economic burden to psychological well-being. We searched five electronic databases for papers published in 2010-2020. Papers focusing on measures of the economic burden from the government's perspective and diseases other than ESKD were excluded. Out of the 6635 publications identified, 10 publications were included. Three categories of economic burden were identified, namely, direct medical costs, direct non-medical costs, and indirect costs. Direct medical costs required the highest expenditure, whereas the lowest economic burden was for indirect costs. HD patients incurred a higher economic burden than PD patients. Most of the studies were carried out in Asia. The results of the research suggest that the economic burden may affect patients and caregivers, but it is unclear whether the economic burden affects the psychological well-being of the patients and caregivers. Very few studies have assessed the relationship between economic burden and psychological well-being, and further research is needed to gain further insight into the relationship between these two variables., (Copyright © 2023 Copyright: © 2023 Saudi Journal of Kidney Diseases and Transplantation.)

Background: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden., Methods: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively., Results: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism., Conclusions: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers., (© 2023. The Author(s).)

The objective of this study is to describe the caregiver burden, as well as the financial burden among caregivers after inpatient and outpatient neurosurgical patients. In this single center, observational study, adult patients undergoing elective inpatient or outpatient neurosurgery (supratentorial tumor resection or lumbar microdiscectomy) and his/her caregiver were recruited for the study. Bakas Caregiving Outcome Scale (BCOS) was used to assess caregiver burden and data was collected from preoperative period until post-operative day (POD) 30. Cost burden was assessed by a cost diary from day of surgery till POD 7. Forty-eight patient-caregiver pairs (21 inpatient craniotomies, 7 outpatient craniotomies, and 20 outpatient microdiscectomies) completed the study. BCOS values were in the negative impact range (<60) on POD1 in craniotomy group and improved to positive impact range (>60) after POD3. Median BCOS score remained at 60 in outpatient microdiscectomy. 56% of caregiver had at least 1 day of loss of income and 20% lost income throughout first 8 days. Median Cost (in Canadian dollars) associated with caregiving ranged from C$57 to C$250 amongst different groups. We concluded that caring for patients after craniotomy is psychologically demanding which leads to an increase in caregiver burden. In addition, there is a cost burden for the care givers in the form of missed workdays and additional direct expenses. Further studies are needed to recognize this problem and address the burden among the caregivers in the neurosurgical population., Competing Interests: Declaration of Competing Interest The authors have no conflict of interest to disclose., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

The provision of care to older persons can impose significant burden on those providing care, burdens influenced by care recipient characteristic, caregiver attributes and availability of social support. This paper focuses on identifying relationships between caregiver burden and the socio-demographic, health and functional status attributes of care recipients age 60 years and older in Jamaica. A nationally representative cross-sectional study was done among persons providing non-institutional care for a single person 60 years and older. Data were obtained from a total of 180 caregivers from the four geographic health regions of Jamaica using the Zarit Burden Interview and a 44-question structured questionnaire. Associations between caregiver burden and socio-demographic, health and functional status of care recipients were examined and logistic regression applied to ascertain independent predictors of caregiver burden. The results revealed statistically significant relationships between caregiver burden and care recipients' receipt of conditional cash transfer grants and the ability to toilet independently. In multivariate analysis, ability to toilet remained a significant predictor of caregiver burden-Caregivers who had care recipients who were able to toilet independently were 71% less likely to have mild to severe caregiver burden compared to those who had care recipients that were not able to toilet (OR 0.29; 95% CI 0.14-0.57). Families, health care providers, social workers, state actors and caregivers should take this into account as they develop strategies to mitigate associated caregiver burden.

The number of hemodialysis patients is increasing worldwide, and the caregivers of these patients experience a great burden. This study was conducted to examine the relationship between caregiver burden and spiritual well-being in caregivers of hemodialysis patients in Kerman, Iran. This correlational study was conducted on 382 caregivers of hemodialysis patients. Data were collected using the Caregiver Burden Inventory (24 items) and Ellison and Paloutzian 20-Item Spiritual Well-being Questionnaire. Data were analyzed by descriptive and inferential statistics (t test, ANOVA, Spearman correlation, and linear regression analysis) in SPSS 20 software. The findings showed that 45 (11.8%) caregivers had mild, 214 (56%) moderate, and 123 (32.2%) high caregiver burden. Furthermore, 1 (0.3%) caregiver had mild, 349 (92.4%) moderate, and 32 (8.4%) high spiritual well-being. Also, Spearman correlation test showed a significant reveres relationship between caregiver burden and spiritual well-being scores (p < 0.001, r = - 0.41). Moreover, the results of the regression analysis showed that the patient's income, frequency of patient dialysis per week, and patient's need to receive care and spiritual well-being were predictors of caregiver burden, which explained 41% of the burden in caregivers. The results of this study revealed that spiritual well-being was negatively related to caregiver burden and was one of its predictors. Therefore, spirituality can be used as a low-cost and effective intervention to reduce the caregiver's burden.

Objectives: This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions., Methods: Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded "Definitely No" to the question "Are you receiving all the help you need?" were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden., Results: Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school., Discussion: Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

COVID-19 pandemic in Argentina has affected the care of older adults with dementia deeply. Our objective was to study how the obligatory social isolation affected stress caregiver and burden of care of family members of subjects living with dementia in the community after the initial 4 weeks of quarantine in our setting. We did a questionnaire survey among 80 family caregivers of persons with Alzheimer's disease (AD) or related dementia collected on April 2020. We designed a visual analog scale to test the level of the burden of care. Characteristics of people with dementia and their caregivers were analyzed with descriptive (mean, standard deviation, frequency and percent) and inferential statistics (chi-square test). The sample included older adults (mean age: 80.51 ± 7.65) with different stages of dementia. Family was the primary provider of care in 65%. Overall, COVID-19 confinement increased stress caregiver independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease. Other findings were that half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies. Family members' main concerns were for severe dementia cases, fear of absence of the paid caregiver during the epidemic, and for mild cases fear of spreading the disease while assisting patients with instrumental activities. A partnership between departments of public health, care workers and families must be planned to guarantee continuity of care during these unique COVID-19 times.

Purpose: The purpose of the study was to assess care transitions and caregiver burden among caregivers of individuals with anti-N-methyl-d-aspartate (NMDA) receptor encephalitis (anti-NMDARE)., Methods: Caregivers of individuals with anti-NMDARE were recruited via patient organization websites. Demographic and clinical information as well as responses to the Care Transition Measure 15 (CTM-15) and Zarit Burden Interview (ZBI) were collected. Exploratory factor analysis (EFA) was conducted on the ZBI, and underlying constructs were analyzed for associations with the CTM-15 and clinical characteristics., Results: Seventy-six caregivers participated. On the CTM-15, the top items where caregivers disagreed or strongly disagreed were the following: "when the patient left the hospital, I had a readable and easily understood written plan that described how all of their healthcare needs were going to be met" (73%), "when the patient left the hospital, I was confident that I know how to manage their health" (62%), and "when the patient left the hospital, I had all the information I needed to be able to take care of them" (58%). Worse care transitions significantly predicted higher caregiver burden scores. Mean ZBI score was 44, falling in the moderate to severe burden range. Exploratory factor analysis was conducted and found four common underlying factors associated with total score. Factor 1, the impact of caring on caregivers' personal lives (accounting for 51% of total score variance), was selected for further analysis because of its modifiable nature. Higher ZBI scores were associated with lower CTM-15 scores (p < 0.003) and the individual with anti-NMDARE not returning to driving (p < 0.002)., Conclusion: This study identified specific elements of care transitions and caregiver burden that are not currently being addressed for individuals with anti-NMDARE. Attention to these aspects of care in the development of targeted interventions may improve outcomes in individuals with anti-NMDARE and their caregivers., (Copyright © 2020 Elsevier Inc. All rights reserved.)

The caregiver burden is frequently used to refer to the physical and psychological problems that may arise from caring for a dependent relative. We conducted a meta-analysis to see whether Zarit Burden Interview (ZBI) scores differed by dependent's pathology. Results from 125 studies showed that caregivers of individuals with a physical disability have an estimated mean ZBI score (±SE) of 27 ± 2.6 - a score significantly lower than for caregivers of persons with dementia or cognitive impairment (34.1 ± 1.1), mental illness (32.6 ± 1.7), or Alzheimer's (32.5 ± 1). Our analysis of Alzheimer's revealed differences among cases of mildly (25.8 ± 5.2), moderately (35.6 ± 7.8), and severely (42.6 ± 7.9) afflicted dependents.

As the most common form of senile dementia, Alzheimer's disease (AD) is accompanied by a great deal of uncertainty which can lead to fear and stigma for those identified with this devastating disease. As the AD definition evolves from a syndromal to a biological construct, and early diagnoses becomes more commonplace, more confusion and stigma may result. We conducted a narrative review of the literature on AD stigma to consolidate information on this body of research. From the perspective of several stigma theories, we identified relevant studies to inform our understanding of the way in which implementation of the new framework for a biological based AD diagnosis may have resulted in new and emerging stigma. Herein, we discuss the emergence of new AD stigma as our understanding of the definition of the disease changes. We further propose recommendations for future research to reduce the stigma associated with AD.