Exploration of Parkinson's Disease Symptomatology Subtypes From the Caregiver Perspective: Implications for Caregiver Burden, Depression, and Anxiety.

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.

Psychometric investigation of the affiliate stigma scale in Mexican Parkinson's disease caregivers: Development of a short form.

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.

Sleep, caregiver burden, and life satisfaction in Parkinson's disease caregivers: a multinational investigation.

PURPOSE: 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. MATERIALS AND METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.Implications for rehabilitationParkinson'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.

Parkinson's Symptoms and Caregiver Affiliate Stigma: A Multinational Study.

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.

Cross-cultural differences in Parkinson's disease caregiving and burden between the United States and Mexico.

INTRODUCTION: Given the rapidly aging population in both the United States and Mexico, rates of Parkinson's disease (PD) are likely to rise in both countries, suggesting that the number of individuals providing informal care will also increase, and the healthcare system will have to consider the burden this places upon caregivers. Therefore, the purpose of the current study was to examine differences in PD caregiving and burden between the United States and Mexico. METHODS: Data were collected from PD caregivers in the Parkinson's Clinic at the Hospital Civil Fray Antonio Alcalde in Guadalajara, Mexico (N = 148) and the Parkinson's and Movement Disorders Center at Virginia Commonwealth University in Richmond, Virginia (N = 105) regarding caregiver demographics and self-reported burden. RESULTS: Despite considerably more time spent in caregiving duties, higher rates in unemployment or underemployment, and lower education levels, Mexican PD caregivers reported significantly less personal strain and role strain than did their United States counterparts. Even after controlling for these and other demographic differences between the two sites, the differences in caregiver burden remained. CONCLUSIONS: Latino cultural values in Mexico encouraging the importance of caring for family members with PD and respecting elders may promote caregiving and even make it a point of cultural pride, helping to overcome potential negative effects on caregivers seen in the United States. The scientific and medical communities should view caregiving as a culturally embedded and potentially positive role, rather than predominantly as burdensome as frequently conceptualized in Western or Eurocentric cultures.

Parkinson's family dynamics and caregiver sense of coherence: A family-systems approach to coping in Mexico and the United States.

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.

Structural Equation Modeling of Parkinson's Caregiver Social Support, Resilience, and Mental Health: A Strength-Based Perspective.

Only scant literature has focused on social support in Parkinson's disease (PD) caregivers, and no studies to date have examined resilience in this population, despite both variables having been shown to be important in other caregiving populations. As a result, the purpose of the current study was to construct and validate a theoretical structural equation model whereby social support is associated with higher levels of resilience in PD caregivers and increased resilience is related to decreased mental health symptoms. Two hundred fifty three PD caregivers from two clinics in the United States and Mexico completed self-report measures of these constructs. Results suggested that the hypothesized pattern was robustly supported with the structural equation model showing generally good fit indices. Higher levels of social support were associated with increased resilience, which in turn was associated with reduced mental health symptoms. Resilience partially mediated social support's effect on mitigating mental health symptoms. The model explained 11% of the variance in resilience and 35% in mental health symptoms. These findings have implications for future research on the development and tailoring of interventions to improve social support, resilience, and mental health in PD caregivers.

Parkinson's Symptoms and Caregiver Burden and Mental Health: A Cross-Cultural Mediational Model.

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.

Parkinson's family needs and caregiver mental health: A cross-cultural comparison between Mexico and the United States.

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.

Distress associated with patients' symptoms and depression in a sample of Mexican caregivers of individuals with MS.

PURPOSE/OBJECTIVE: The objectives of this quantitative correlational study were to: (a) determine the frequency and level of distress associated with patients' symptoms as reported by caregivers of individuals with multiple sclerosis (MS), (b) determine the prevalence of depression in these caregivers, and (c) examine the relationship between these caregivers' total symptom distress and depression after controlling for patient, caregiver, and illness characteristics. METHOD/DESIGN: In this quantitative correlational study, data from 79 caregivers of individuals with MS in Mexico were analyzed. RESULTS: The patient symptoms with the highest average level of distress for caregivers were depression, difficulty talking, difficulty hearing, becoming upset easily, and upsetting other people. Patient symptoms with the lowest average level of distress for caregivers included difficulty learning, seizures, trouble reading, difficulty eating, and difficulty writing. Forty percent of the caregivers met the criteria for probable major depressive disorder. Results of a multivariate regression analysis showed that caregiver total symptom distress was significantly related to caregiver depression, after controlling for patient marital status, caregiver gender, caregiver relationship to patient, caregiver current employment, and months spent caregiving. CONCLUSIONS: These findings have implications for MS patients and caregivers as well as larger society, as depression in caregivers often results in the institutionalization of individuals with chronic illnesses and disabilities, which is costly for both individuals and society. In addition, there might be increased expenditures associated with the caregivers' own declining health. For these reasons, it is important to develop a better understanding of its risk factors to identify caregivers who might benefit from intervention.

Psychometric data for the revised token test in normally developing Mexican children ages 4-12 years.

Language comprehension is vital to social and educational development but few pediatric tests are available for its assessment. To approach this problem, two versions of the Token Test (TT), "TT short form" (DeRenzi & Faglioni, 1978) and "Revised Token Test" (RTT), were first compared. Using a sample of 88 normally developing Spanish-speaking children, the tests were compared on their: (a) established psychometric development and (b) internal consistency. The RTT was judged to be superior and was selected for additional experimentation. The RTT was compared with a developmental measure of lexical knowledge on a cross-sectional sample of 250 4-12-year-old normally developing Spanish-speaking children. A significant positive and high correlation supports its concurrent validity. Significant differences across the age groups, along with a principal component analysis that yielded a three-factor structure, support its construct validity. Preliminary normative data across the nine age groups are provided.

Development of the family needs assessment tool for caregivers of individuals with neurological conditions in Latin America / Desarrollo del instrumento de evaluación de las necesidades familiares para cuidadores de personas con alteraciones neurológicas en Latinoamérica

This study developed and examined the psychometric proprieties of the Spanish Family Needs Assessment Tool (FNAT) for caregivers of individuals with neurological conditions in Latin America. Twentyseven items from previously published caregiver family needs scales were combined to represent nine types of needs. These items were administered to 308 caregivers of individuals with neurological conditions in Latin America. An exploratory factor analysis suggested the retention 14 items and five factors: Household Needs, Informational Needs, Financial Needs, Health Needs, and Social Support Needs. A confirmatory factor analysis then examined the fit of the five-factor solution and suggested adequate model fit. Cronbach's alphas for the overall scale and subscales suggested acceptable internal consistency. The FNAT holds promise to help researchers and clinicians assess the family needs of caregivers in Latin America.

El objetivo de este estudio fue evaluar las propiedades psicométricas del instrumento de evaluación de necesidades familiares (FNAT) en un grupo de 308 cuidadores de personas con alteraciones neurológicas en Latinoamérica. El FNAT consta de 27 ítems que miden algunas de las principales necesidades que experimentan los cuidadores de estas personas. Con el objetivo de determinar la estructura factorial del instrumento se realizó un análisis factorial exploratorio. Los resultados muestran que de los 27 ítems iniciales del instrumento se obtuvieron 5 factores (Necesidades de ayuda en tareas domésticas, necesidades de recibir información, necesidades apoyo financiero, necesidades de ayuda para mejorar la salud y necesidades de apoyo social) que estarían conformados por 14 ítems. Mediante un análisis factorial confirmatorio, se evaluó el nivel de ajuste de estos cinco factores cuyo resultado final muestra un ajuste adecuado del modelo y un nivel aceptable de consistencia interna tanto para la escala completa como para las subescalas. En conclusión, esta nueva versión del FNAT de 14 ítems posee buenas características psicométricas que lo hacen ser un instrumento confiable en la evaluación de las necesidades de cuidadores de personas con alteraciones neurológicas tanto en contextos clínicos como de investigación.