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Background: Parkinson's disease (PD) caregivers, particularly in Latin America, may experience high levels of affiliate stigma due to their association with a person having a disability. The most common measure used of this construct in the literature, the Affiliate Stigma Scale, was validated using non-standard and questionable methods., Objective: The purpose of this study was to investigate the factor structure and psychometric properties of the Spanish version of the Affiliate Stigma Scale with PD caregivers in Mexico using more widely accepted psychometric approaches including confirmatory and exploratory factor analyses (CFAs, EFAs)., Methods: A sample of 148 PD caregivers from Mexico completed this measure, as well as indices of caregiver burden and anxiety., Results: Initial CFAs revealed that the data did not fit either the originally proposed one-factor or three-factor structures. An EFA was then conducted which was unable to discern any factor structure. Upon instituting a stepwise removal alpha-if-item-deleted process, a 5-item Affiliate Stigma Scale Spanish Short Form was retained with an adequate Cronbach's alpha, good convergent validity, and a Short Form CFA generally indicating adequate fit., Conclusions: The new Spanish Affiliate Stigma Scale Short Form holds promise for more appropriately measuring affiliate stigma likely in general but particularly in Spanish and among PD caregivers. The Short Form can assist not only in assessing levels of caregiver affiliate stigma, but in creating novel interventions to help support caregivers and decrease stigma.

Background: While research has demonstrated associations between Parkinson's disease (PD) severity and caregiver burden and emotional functioning, less is known about the associations between specific PD symptom patterns and caregiver functioning., Objective: The purpose of the current study was to explore symptomatology subtypes in PD from the caregiver perspective in the U.S. and Mexico and to determine whether caregiver burden, depression, or anxiety differed by PD symptomatology subtype., Methods: Two hundred fifty-three caregivers ( M age = 59.9) completed Parts I and II of the Movement Disorder Society-Unified Parkinson's Disease Rating Scale (MDS-UPDRS), the Zarit Burden Interview, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7 scales., Results: Cluster analysis using domains from the MDS-UPDRS revealed 5 symptomatology subtypes: pain/motor predominant, low symptoms, severe diffuse symptoms, moderate restricted symptoms with speech/oral predominant, and mood predominant. Caregiver burden was greatest for caregivers of individuals in the severe diffuse symptom and moderate restricted symptoms with speech/oral predominant clusters. High caregiver depression and caregiver anxiety were observed in all clusters other than the low symptoms cluster. There were no site by cluster interactions, suggesting that symptom patterns contribute to caregiver functioning in similar ways in the U.S. and Mexico., Conclusions: This data-driven analysis revealed 5 symptomatology subtypes of PD from caregivers' perspectives and highlighted the need for treatments and interventions based on predominant PD symptom expression. Importance of caregiver support across various symptomatology expressions, and particularly on specialist treatment for predominant speech/oral difficulties was recommended.

Background and Objective: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson's disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer's disease are discussed., Methods: Survey data were collected in PD clinics at public, academic medical centers. Informal caregivers of an individual with PD from the US (n = 105) and from Mexico (n = 148) participated in the study. Caregivers completed a questionnaire that included the MDS Unified PD Rating Scale to describe the symptoms of the individual with PD, as well as the Affiliate Stigma Scale and demographic information., Results: A series of multiple regressions was run to examine whether PD symptoms were associated with affiliate stigma and if these differed by country. These regressions suggested that different patterns of PD symptoms predicted affiliate stigma in each country. Stigma was higher in the US compared to Mexico, and the relationship between bowel/bladder symptoms and affiliate stigma was significantly stronger in the US., Conclusion: Symptoms of individuals with neurodegenerative diseases are related to affiliate stigma experienced by caregivers, and these relationships may differ cross-culturally. Negative public attitudes concerning bowl and bladder issues and the physical symptoms that accompany PD remain a source of stigma for caregivers and families, particularly in the US. Interventions for caregivers of individuals with neurodegenerative diseases should include strategies for coping with stigma concerning bladder and bowel problems, as well as other physical and mental health issues., (Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.net.)

Objective: Caregivers for individuals with Parkinson's disease (PD) can experience high burden, which underlies the importance of examining the needs of caregivers to be able to support them in the caregiving role. The current study aims to assess the relationships among PD symptoms and four measures of caregiver quality of life (QOL; i.e., personal and social activities, anxiety and depression, self-care, and strain)., Method: Data from 181 caregiver/care recipient dyads ( N = 362) were collected at a multidisciplinary PD clinic in a public, academic medical center in the southeastern United States at the time of the care recipient's first neuropsychological evaluation., Results: All PD symptoms were positively correlated with each other, as were all forms of caregiver QOL, and all PD symptoms were associated with each measure of caregiver QOL. A series of regressions suggested that demographics and PD symptoms predicted all four types of caregiver QOL, explaining 33% of the variance in caregiver personal and social activities, 24% in anxiety and depression, 28% in self-care, and 36% in strain. Female caregivers and those who provided care to male care recipients generally had worse QOL. Greater PD-related symptoms including difficulties with mobility, decreased emotional well-being, and greater nonmotor functioning impairment were unique predictors of reduced caregiver QOL., Conclusions: PD symptoms are robustly related to caregiver QOL, with mobility and nonmotor symptoms as the primary drivers of this relationship. Interventions for PD caregivers should include strategies for managing mobility and nonmotor symptoms, as well as their QOL effects on caregivers. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Background/objective: Given the growing population of individuals with Parkinson's disease (PD) worldwide and the growing need for family members to take on a caregiving role, it is critical that cross-cultural differences be examined in order to better meet the needs of PD caregivers. The purpose of this study was to examine the connections between the unmet needs and mental health of PD caregivers differentially in Mexico and the United States., Methods: In Parkinson's clinics at public, academic medical centers, PD caregivers from Mexico (n = 148) and the United States (n = 105) completed measures of unmet family needs and mental health., Results: Caregivers in the United States had higher unmet needs for emotional support and for a community support network than caregivers in Mexico, although caregivers at the two sites had comparable levels of anxiety and depression. Unmet family needs explained 29.5% of the variance in caregiver anxiety in the United States (p < 0.001) but only 5.7% in Mexico (p = 0.209). Unmet family needs explained 30.4% of the variance in caregiver depression in the United States (p < 0.001) and 14.0% in Mexico (p = 0.001). In the United States, unmet needs for emotional support and for instrumental support uniquely predicted caregiver anxiety and depression, and in Mexico only the unmet need for instrumental support was a unique predictor., Conclusions: PD caregivers in the United States are at increased risk for poor emotional and community support, and these unmet needs channel directly into caregiver anxiety and depression. In Mexico, where caregivers have stronger emotional and community support, caregivers' unmet need for instrumental support generates anxiety and depression. Important targets for PD caregiver interventions may differ between Mexico and the United States.

Background: Individuals with Parkinson's disease (PD) and their caregivers are at risk for emotional distress and hypercortisolism. Expressive writing is an effective complementary intervention to ameliorate the psychological and physiological effects of chronic illness. This pilot study aimed to evaluate feasibility and preliminary effectiveness of an expressive writing intervention for individuals with PD and their caregivers., Methods: Individuals with PD (N = 27) and their caregivers (N = 14) were randomly assigned to expressive (N = 15 patients, eight caregivers) or neutral (N = 12 patients, six caregivers) writing conditions. Cortisol awakening response (CAR), non-motor functioning, quality of life, and performance on tests of cognitive functioning were assessed at baseline, immediate post, 4-month, and 10-month post intervention., Results: Attrition was a challenge as eight patients (29.62 %) and four caregivers (28.57 %) chose to discontinue before beginning the intervention or were lost to follow up prior to completing the intervention or the first follow up visit. Significant reduction in anxiety, marginally significant improvement in depression and caregiver burden, and significant improvements in performance on tests of learning and memory were observed, but these changes did not differ by writing condition. CAR significantly differed over time between patients and caregivers and writing conditions., Conclusions: Some evidence for the feasibility and effectiveness of writing to alleviate hypercortisolism was demonstrated in a small sample of PD patients; however, relatively high attrition rates and the lack of difference between expressive and neutral writing conditions on emotional and neurocognitive outcomes suggests expressive writing procedure modifications may be needed to obtain optimal results for this population., Trial Registration: ClinicalTrials.gov, NCT02217735 , Study Start Date: August 30, 2011.

Perceptions of service needs and barriers to care among caregivers of individuals with Parkinson's disease have not been well explored. The purpose of this study was to assess caregiver perceptions of their own and patients' medical and supportive service needs. An online and paper survey was disseminated to a sample of caregivers (n = 66) of individuals with Parkinson's disease. Although caregivers reported positive quality of life and adjustment to caregiving, nearly half of the sample endorsed feeling stressed about caregiving. Caregivers reported that services for symptom management, coping with changes in lifestyle, future planning, relationships, and cognition, and wellness strategies were most needed. Reported barriers to patients accessing care included limited service availability and a lack of insurance coverage for services. These findings suggest a need to improve access to services for patients and increased efforts to promote caregiver wellness at movement disorder specialty clinics., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Purpose: A primary brain tumor patient and caregiver survey was completed to investigate interest in brief support opportunities, focused on education, memory training, and healthy coping, during a routine clinical visit and at 3-month follow-up., Methods: Patients with primary brain tumors receiving care in the Radiation Oncology Department at Mayo Clinic Rochester and their caregivers were recruited to complete the survey between June 2008 and September 2009., Results: Both patients and their caregivers expressed greatest interest in education about brain tumors and cognitive effects of treatment. Interest in support opportunities targeting education, memory training, or healthy coping was low to modest. Bimodal distributions were found for almost all the support opportunities, revealing subgroups of patients and caregivers with high interest in such sessions. Overall, ratings of interest did not differ over time., Conclusions: Patients with primary brain tumors and their caregivers expressed most interest in education about their disease and potential cognitive effects of treatment. It appears that subgroups of patients and caregivers have very high interest in brief support opportunities. Identifying these subgroups of patients and families will allow targeted interventions focused on their needs and make the best use of limited resources.

The primary aim of this study was to examine the pattern of associations among PD patient and caregiver sleep problems, caregiver burden, and caregiver life satisfaction. A secondary aim was to assess whether the pattern of associations differed between Mexican and U.S. caregivers. Analyses were performed on data obtained from 253 caregivers (M age = 59.92). A composite score was produced for caregiver and patient sleep problems. The Zarit Burden Interview and Satisfaction with Life Scale measured caregiver burden and life satisfaction, respectively. A structural equation model with an invariance design was developed to examine and compare the pattern of associations. The model was generally invariant across U.S. and Mexican caregivers. Three significant indirect effects were found: caregiver sleep problems were negatively associated with life satisfaction via caregiver burden (p = 0.003); PD patient sleep problems were positively related to caregiver burden via caregiver sleep problems (p = 0.005) and life satisfaction via caregiver burden and caregiver sleep problems (p = 0.002). PD patient sleep problems were associated with caregiver sleep problems, leading to increased burden in caregivers and poorer life satisfaction. The findings highlight a potential opportunity for empirically supported sleep interventions. Parkinson's disease is a progressive neurological condition that impacts patient and caregiver quality of life. Patient sleep problems contribute to greater caregiver burden, sleep problems, and reduced life satisfaction. The findings suggest patient and caregiver sleep may be a worthwhile target for intervention in order to reduce risk of caregiver burden and improve life satisfaction. [ABSTRACT FROM AUTHOR]

Objective: The population of individuals with Parkinson's disease (PD) is growing in Mexico and the United States, and there is an increasing need for family members to provide caregiving. This study examined the connections between family dynamics and coping, or sense of coherence, among PD caregivers in Mexico (n = 148) and the United States (n = 105). Methods: Caregivers completed measures of family dynamics and sense of coherence across indices of comprehensibility, manageability, and meaningfulness. Results: Although caregivers in Mexico and the United States had similar levels of sense of coherence and family dynamics reflecting strengths/adaptability and being overwhelmed with difficulties, caregivers in Mexico had worse disrupted communication. Family dynamics explained: 24.2% of the variance in caregiver comprehensibility in the United States and 17.5% in Mexico; 34.1% in manageability in the United States and 23.5% in Mexico; and 22.6% in meaningfulness in the United States and 22.7% in Mexico (all Ps < 0.001). In both Mexico and the United States, family strengths/adaptability uniquely predicted caregiver comprehensibility, manageability, and meaningfulness. Being overwhelmed with difficulties uniquely predicted comprehensibility in Mexico and manageability and meaningfulness in the United States. Conclusion: The development of family‐systems interventions for PD caregivers to improve family strengths/adaptability and help families deal with difficulties may increase caregiver coping. [ABSTRACT FROM AUTHOR]

Informal caregivers are critical in the care of individuals with Parkinson's disease (PD) and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden and mental health issues. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. The current study examined the following connections in a sample of PD caregivers from the United States (N=105) and Mexico (N=148): (a) PD-related impairments (motor and nonmotor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, and (c) PD-related impairments and mental health through caregiver burden. Study results uncovered significant relations among PD-related impairments, caregiver burden, and caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites. Findings highlight a number of important intervention targets for caregivers and families, including caregiver burden and mental health. [ABSTRACT FROM AUTHOR]