Burden,perceived health status,and mood among caregivers of Parkinson's disease patients

The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross‐sectional study that included 289 patient–caregiver pairs was conducted. Caregiver self‐assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 ± 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health‐related quality of life (HRQol; EQ‐Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r_S = 0.01–0.28) with patient‐related variables (disease duration, HY, SCOPA‐Motor, SCOPA‐AUT, HADS, PPRS, and CISI‐PD) whereas the ZCBI correlated moderately (r_S = 0.27–0.47). Among caregivers, the EQ‐Tariff was significantly lower and the HADS‐Anxiety scores significantly higher for women. ZCBI and HADS‐depression, though not EuroQol and HADS‐anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient‐related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL. © 2008 Movement Disorder Society     

Duodenal levodopa/carbidopa infusion therapy in patients with advanced Parkinson’s disease leads to improvement in caregivers’ stress and burden

Background: Continuous duodenal levodopa infusion (DLI) is an effective therapy that improves quality of life (QoL) in advanced Parkinson’s disease (PD). However, the impact of DLI on caregivers’ stress and burden has not been reported. Methods: We evaluated prospectively open‐label seven advanced PD patients (65.7 ± 9.6 years, 71.4% men) treated with DLI. Schwab & England Activities of Daily Living Scale (ADLS), 39‐item Parkinson’s disease QoL Questionnaire Summary Index score (PDQ‐39SI), Zarit Caregiver Burden Interview (ZCBI), and Caregiver Strain Index (CSI) were used. Comparisons were made between scores obtained at baseline and those at a mean follow‐up of 31.4 ± 7.9 months (range, 23–42). Results: In patients, mean ± SD ADLS was increased from 50 ± 8.2 to 80 ± 11.6 (P = 0.014), and mean ± SD PDQ‐39SI was decreased from 53.7 ± 11.9 to 33.6 ± 12.8 (P = 0.018). In caregivers, ZCBI decreased from 43 ± 13.3 to 20.7 ± 12.1 (P = 0.018) and CSI from 6.3 ± 2.5 to 1.6 ± 0.9 (P = 0.018). At baseline, 57.1% of caregivers reported moderate to severe burden (ZCBI 41–88) compared to 28.6% at the end of the follow‐up (P = 0.015); at that time, no caregiver reported high level of stress (CSI ≥ 7) compared to 57.1% at baseline (P = 0.046). There were significant correlations between ZCBI and CSI improvement (r = 0.813, P = 0.026), ZCBI and PDQ‐39SI (r = 0.875, P = 0.01), and ZCBI and ADLS (r = 0.813, P = 0.026). Conclusions: Duodenal levodopa infusion‐related clinical improvement in patients with advanced PD leads to substantial reductions in caregivers’ stress and burden.     

Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients

PurposeTo analyze the main determinants of burden and health-related quality-of-life (HRQoL) in caregivers of Brazilian Parkinson's disease (PD) patients.MethodsCaregivers answered Hospital Anxiety and Depression Scale (HADS), Zarit caregiver burden interview (ZCBI) and EQ-5D, a generic measure of HRQoL. Patients were assessed with Hoehn and Yahr (H&Y) staging; Scales for Outcomes in Parkinson's disease (SCOPA) Motor, Cognition, Psychosocial and Sleep scales; Non-Motor Symptoms Scale; HADS; Clinical Impression of Severity Index; EQ-5D and Parkinson's Psychosis Rating Scale.Results50 Caregiver-patient dyads were assessed. Caregivers were significantly younger (55.7 vs. 65.4 years), p < 0.0001. Eighty-eight per cent of caregivers were females, and 78% were spouses. The proportion of caregivers who scored ≥11 points in the HADS-anxiety or HADS-depression subscales was 12% and 14% respectively. ZCBI mean score was 20.2 (SD 12.8), and significantly worsened as severity of disease, based on H&Y, increased (H&Y 1–2: 16.4, H&Y 3–5: 24.6; p = 0.02). Caregiver's EQ-5D Index and visual analog scale mean scores were 0.7 (SD: 0.26) and 76.3 (SD: 16.2) respectively. Weak to moderate association (r = ?0.27 to ?0.39) between EQ-5D Index and ZBCI mean scores was observed in caregivers. Patient outcomes (sleep disorders and behavioral-psychotic symptoms) and caregiver outcomes (mood, time of caregiving) were independent predictors of caregiver burden (adjusted R² = 0.55; p < 0.0001) in the multivariate regression analysis. Caregiver's mood status was a significant determinant of caregiver's HRQoL, as measured by the EQ-5D Index (adjusted R² = 0.28; p = 0.006).ConclusionsPatients' psychiatric and sleep disorders and caregiver's mood significantly influenced burden and HRQoL in Brazilian PD caregivers.     

Falls of the elderly are associated with burden of caregivers in the community

BACKGROUND: Little attention has been paid to the impact on caregivers who provide care to a family member who has falls. The purpose of the current study was to determine whether falls of care recipients are associated with caregivers' burden. METHODS: A cross-sectional study of 1874 community-dwelling care recipients and 1478 caregivers was conducted. We examined the characteristics of care recipients and caregivers, including demographic characteristics, depressive mood as assessed by the Geriatric Depression Scale (GDS-15), the basic activities of daily living (bADL), fall history in the past 6 months, and physician-diagnosed chronic diseases to determine whether there was an association with caregivers' burden as assessed by the Zarit Burden Interview (ZBI). RESULTS: A total of 567 care recipients (30.3%) had a history of falls in the past 6 months. The mean ZBI score of caregivers with falls was significantly higher than that of caregivers without falls. There were negative correlations between the ZBI score and recipient bADL score and positive correlations between the ZBI score and GDS-15 scores of the recipient and caregiver, the level of severity of dementia, and the Charlson comorbidity index. Male recipient, fall history, behavioral disturbance, and dementia had significantly higher ZBI scores than those of controls. The stepwise multiple regression analyses found that the GDS-15 score of caregivers and recipients, level of severity of dementia, bADL score, and fall history were independently associated with the ZBI score. CONCLUSION: Among the community-dwelling frail elderly, falls are associated with caregiver burden even when controlling for various possible confounding factors.     

Caregiver burden after stroke: towards a structural model

Background and purposeStroke may impose a severe burden on both the patients and their caregivers. Although there is substantial literature relating to the adverse impact of stroke on patients, considerably less is known about its impact on their caregivers. The aim of this study was to analyse predictive factors of the overall burden in caregivers of stroke victims and to verify the structural model of burden, built on the basis of theoretical and empirical assumptions.Material and methodsOne hundred and fifty pairs of patients and their caregivers were evaluated. The Caregiver Burden Scale (CB), Hospital Anxiety and Depression Scale (HADS), Sense of Coherence Scale (SOC), Social Support Scale, Geriatric Depression Scale, Barthel Index and Scandinavian Stroke Scale were all used to evaluate caregiver burden and the characteristics of patients and caregivers.ResultsThe caregivers experienced a moderate burden (mean CB = 2.08) and emotional distress (mean total HADS = 14.1). Path analysis showed that higher burden was associated with a lower SOC score, higher emotional distress, and lower patient's functional status. Higher emotional distress, in turn, was associated with lower SOC and lower patient's functional status. These results show that the burden and the degree of emotional disturbance are two distinct negative consequences of caregiving.ConclusionsThe negative consequences of caregiving depend mainly on the caregiver's intra-psychic factors and the patient's disability. Professional interventions should be targeted at enhancing caregivers’ ability to cope with stress, improving their caregiving skills and reducing the physical dependence of patients.     

Patients', doctors', and caregivers' assessment of disability using the UPDRS‐ADL section: Are these ratings interchangeable?

This multicenter study sought to analyze the validity and reliability of the Unified Parkinson's Disease Rating Scale (UPDRS)-section 2 (Activities of Daily Living, ADL) as applied by patients and caregivers. Sixty pairs of PD patients-caregivers were enrolled for study purposes. Neurologists used a set of scales to determine disease severity and patients' functional state. Patients and caregivers used adapted versions of the UPDRS-section 2 in tandem with other measures. Wilcoxon and Mann-Whitney tests, weighted kappa, intraclass and Spearman's correlation coefficients, as well as multivariate linear regression models were applied. On the whole, PD patient self-assessment and caregiver evaluation of patients' disability showed close concordance with neurologists' ratings. Correlation between caregiver ratings and clinical evaluation tended to be slightly lower than that for patient-based self-assessment. Depression showed a positive correlation with disability and had a nonsystematic influence on UPDRS-section 2 (ADL) scores. As expected, there was a significant correlation between perceived disability and health-related quality of life measures. Caregiver burden did not reduce the level of agreement with neurologists as to the overall rating of any given patient's disability. In PD, UPDRS-section 2-based assessment of disability by patients themselves and caregivers is a valid and reliable outcome.     

Stress in caregivers of demented people in Korea--a modification of Pearlin and colleagues' stress model

OBJECTIVES: We investigated the influence of demented people's function and caregiver burden on caregivers' psychological distress. Based on a modified model of Pearlin and colleagues (1990), we assessed the stress of demented people's caregivers in Korea. METHODS: A total of 122 demented people and their caregivers participated in this study. We evaluated dementia severity by the Clinical Dementia Rating (CDR), and caregivers reported their objective and subjective stressors. Objective stressors are the demented people's functional deterioration and behavioral problems, and subjective stressors are caregivers' reaction to objective stressors and the subjective burden in caregiving. The overall psychological distress of caregivers was evaluated by the Beck Depression Inventory (BDI) and the Spielberger Trait Anxiety Inventory-State (STAI-S). RESULTS: There were significant differences in both objective and subjective stressors according to the severity of dementia, but there was no significant difference in caregivers' psychological distress. The goodness-of-fit evaluation model showed the coping and social support variables affected the psychological distress as mediator variables (df = 109, chi (2) = 209.75, NFI = 0.949, RFI = 0.929, IFI = 0.975, TLI = 0.964, RMSEA = 0.087). CONCLUSION: The model suggests that psychological distress of caregivers is related to diverse variables, such as objective and subjective stressors, coping, and social support. This study provides verification of the modified model of Pearlin and coworkers in Koreans, and lays a foundation for practical use and further study.     

Burden of caregiving for cardiovascular dysautonomia in Parkinson’s disease

Purpose

We sought to estimate the impact of cardiovascular autonomic neuropathy (cAN) on informal caregivers of patients with Parkinson’s disease (PD), defined as individuals providing regular care to a friend, partner, or family member with PD, and to evaluate the mutual relationship between caregiver burden and patient health-related quality of life (HRQoL).

Methods

We enrolled 36 consecutive patients with PD and their informal caregivers. Patients underwent a detailed motor, autonomic, cognitive, and functional assessment. Caregivers were assessed using the Zarit Burden Interview (ZBI). Differences in caregiver burden, expressed by the ZBI score, and strength of association between caregiver burden, cAN, and HRQoL were assessed using analysis of covariance (ANCOVA), logistic regression, and linear regression analyses. Analyses were adjusted for patients’ age, PD duration, and motor and cognitive disability, as well as caregivers’ age.

Results

Moderate-severe caregiver burden was reported in 41.7% of PDcAN⁺ versus 8.7% of PDcAN⁻ (p < 0.001). The ZBI score was increased in PDcAN⁺ versus PDcAN⁻ (31.5 ± 3.4 versus 15.2 ± 2.3; p < 0.001), with tenfold higher odds (p = 0.012) of moderate-severe caregiver burden in PDcAN⁺, even after adjusting for potential confounders. The ZBI score correlated with cAN severity (p = 0.005), global autonomic impairment (p = 0.012), and HRQoL impairment (p < 0.001).

Conclusion

These results highlight the significant impact of cAN on PD caregivers and the need for targeted interventions addressing this frequently overlooked and insufficiently treated source of nonmotor disability in PD.

     

Mutuality of the marital relationship in Parkinson's disease

To assess the association between mutuality of the marital relationship in Parkinson's disease with disease severity, disability, mental health, quality of life, and caregiver burden. Spouses of patients with PD completed questionnaires assessing mutuality of the marital relationship (Mutuality Scale) and caregiver strain (Caregiver Strain Index). Patients and spouses completed scales assessing their mental health (Brief Symptom Inventory‐18), medical co‐morbidity (Cumulative Illness Rating Scale) and health‐related QoL (SF‐12v2). PD severity and disability were assessed with the Unified Parkinson's Disease Rating Scale and the Older Americans Resource and Services Disability Scale. The relationships between mutuality and patient and spousal variables were analyzed with univariate correlations and multiple regression. Ninety‐six spouse‐patient pairs were assessed. Increased mutuality, as reported by the spouse was associated with reduced caregiver burden, less depression of both spouse and patient, and less PD severity. Mutuality was inversely correlated with gait impairment, with lesser correlations for balance, urinary incontinence and motor fluctuations. Greater mutuality between spouses and patients with PD is associated with better mental health of both partners, reduced caregiver burden and improved spousal quality of life. PD severity, especially gait, balance, urinary incontinence and motor fluctuations are particular stressors on the marital relationship. © 2008 Movement Disorder Society     

Assessing the severity of dementia. Patient and caregiver

In dementia there is cognitive impairment, disability in daily life, and sometimes behavioral disturbance. These changes are a burden for the caregivers of patients with dementia. Few studies are available that examine all these aspects and their interrelationships in a single patient group. In our study we selected detailed methods for assessment of all these aspects. Interrelationships were studied in 30 mild to moderately impaired patients with dementia and their caregivers. Although the relations of cognitive deterioration to disability in daily life and of burden experienced by the caregiver to patient's condition were stronger than often reported, it was impossible to deduce the overall severity of dementia from one single aspect. Thus, for effective management of patients and caregivers, for evaluation of individual treatment or of clinical trials, attention should be paid to all the different aspects of patients' condition and caregivers' burden. Outcome measurements will then be more valid.     

Family caregiver burden and quality of home care in the context of the Long-Term Care insurance scheme: an overview

This review outlines the findings of 22 studies conducted between 1997 and 2005 by Arai and 19 collaborators regarding caregiver burden and assessment of quality of home care for the elderly. The published research covers the following: cross‐sectional studies on caregiver burden; changes in caregiver burden; appropriateness of the Long‐Term Care insurance assessment scheme; attitudes towards caregiving among caregivers; the development of the short Japanese version of the Zarit Caregiver Burden Interview (J‐ZBI_8); and the effectiveness of service use in reducing caregiver burden and development of a Home Care Quality Assessment Index (HCQAI).     

Exploring the burden of the primary family caregivers of schizophrenia patients in Taiwan

Aim: The purpose of the present study was to investigate the burden of the primary family caregivers of schizophrenia patients and the factors that affect caregiver burden. Methods: A total of 126 pairs of patients and their primary family caregivers were recruited from the day care and acute wards of two teaching general hospitals. Demographic information was collected. All patients went through an interview with a senior psychiatrist using the Brief Psychiatric Rating Scale (BPRS). The Caregiver Burden Inventory–Brief Version and the Chinese Health Questionnaire (CHQ) were used to assess the caregiver burden and the caregivers' health condition. One‐way analysis of variance and Pearson correlation were used to analyze the relationship between demographic factors and caregiver burden. Multiple regression was used to analyze predictors of burden of caregivers. Statistical significance in this study was defined as P ≤ 0.05. Results: The caregiver burden scores (25.9 ± 10.7; range, 3–61) indicated a moderate burden level. Among the five dimensions of burden, caregiver anxiety (2.13 ± 0.86) was the highest, followed by dependency of the patient (1.85 ± 1.02), feeling shame and guilt (1.56 ± 1.02), and family interference (1.43 ± 0.83). The burden level of stigmata (1.32 ± 1.24) was the lowest. The first three rankings of burden were ‘I worry about his/her safety when he/she is alone’ (2.26 ± 1.15), ‘I worry that she/he will become sick at any time’ (2.23 ± 1.10), and ‘I feel he/she depends on me very much’ (2.02 ± 1.29). Patient satisfaction with medical staff support (P = 0.00), CHQ scores of the caregivers (P = 0.00), and the BPRS scores of the patients (P = 0.01) were significantly associated with the caregiver burden scores. Conclusions: The physical and mental health condition of the primary family caregiver of schizophrenia patients was the most important factor determining the caregiver burden level. Comprehensive multidisciplinary care of chronic schizophrenia patients is needed, care that supports the needs and improves the psychiatric symptoms of the patients, helps to decrease the caregiver burden level, and facilitates family participation in treatment.     

Caregiver burden in mobile and non-mobile demented patients: a comparative study

OBJECTIVES: to identify the impact of behavior disturbances on subjective burden of caregivers in demented patients attending day care services. METHODS: subjects were 379 primary caregivers of randomly sampled demented patients living at home, who attended geriatric day care programs. The caregiver burden of the mobile and non-mobile demented patients were measured using the Zarit Caregiver Burden Interview (ZBI). The Mini-Mental State Examination (MMSE) and the Personal Self-Maintenance Scale (PSMS) were used to assess the patients' condition. The Troublesome Behavior Scale (TBS), originally developed in Japan, was used to assess the frequency of behavior disturbances exhibited by patients. RESULTS: the caregivers of the mobile demented patients reported greater caregiver burden compared to those of the non-mobile demented patients. The frequency of behavior disturbance was significantly higher in the mobile patients than the non-mobile patients. For the mobile patient caregivers, wandering, interfering, aggression and repetition were the predictors of caregiver burden. For the non-mobile patient caregivers, 'repeating same questions and/or clinging' was the only predictor of caregiver burden. CONCLUSION: the caregivers of the mobile demented patients reported higher burden due to the patients' behavior disturbance compared to those of the non-mobile patients. These findings indicate a need for further development of interventions to prevent behavior disturbances that are especially burdensome for caregivers.     

Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment

BACKGROUND: While the deleterious psychosocial and mental health effects of dementia caregiving are firmly established, very little is known about the burdens or psychiatric outcomes of providing care to a spouse with less severe cognitive impairment, such as mild cognitive impairment (MCI). We characterized the nature and level of caregiver burden and psychiatric morbidity in spouses of persons diagnosed with MCI. METHODS: Interview assessments were completed on a cohort of 27 spouses of persons with a recent diagnosis of MCI. Patient medical records were reviewed to collect information regarding the MCI patient's medical history. RESULTS: Respondents endorsed elevated levels of both task-related responsibilities and subjective caregiver burden. Depression and anxiety symptom levels also showed some elevations. Measures of caregiver burden were significantly associated with depression and anxiety levels. In particular, even after controlling for demographic risk factors for distress, nursing task burden was correlated with elevated depressive symptoms, and greater lifestyle constraints were correlated with higher anxiety levels. CONCLUSIONS: Although caregiver burden and psychiatric morbidity levels were lower than those typically observed in family dementia caregiving samples, our findings suggest that MCI caregivers have already begun to experience distress in association with elevated caregiving burden. These individuals may be ideal targets for selective preventive interventions to maximize their psychological well-being as caregiving burdens related to their spouses' cognitive impairment increase.     

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population

Objectives: We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers.

Methods: Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted.

Results: Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p?p?p?r?=??2.97). Presence of depression (p?r?=?0.381) was positively correlated and family caregiver role was negatively correlated (p?r?=??0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers.

Conclusions: The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.     

Caregiver-burden in parkinson's disease is closely associated with psychiatric symptoms, falls, and disability

The majority of care of patients with Parkinson's disease (PD) is provided by informal caregivers; their caregiving not only offers physical and emotional support for patients but also plays a large economic role and prevents early nursing home placement. In order to support caregivers in this role, it is necessary to understand the extent of caregiver-burden and factors associated with increased caregiver-burden and distress. We therefore conducted a postal survey in 123 caregivers of patients with PD to assess caregiver-burden and factors associated with it. The majority of caregivers were female (66%). Over 40% of caregivers indicated that their health had suffered as a result of caregiving, almost half had increased depression scores, and two-thirds reported that their social life had suffered. After adjustment of disease duration, there was no difference in caregiver-burden between younger and older caregivers, or between male and female caregivers. Caregiver-burden increased with increasing disability and symptoms of PD, particularly with mental health problems such as depression, hallucinations, or confusion, and with falls. Caregiver-burden scores also correlated significantly with the patients' depression and quality of life scores, and with caregivers' own satisfaction with their marital and sexual relationship. We conclude that more attention should be paid to caregivers' emotional and physical health, particularly in advancing PD with psychiatric complications and falls. These findings also demonstrate that caregiver and patient quality of life are closely linked and emphasize the importance of including caregiver-burden among the problems associated with PD in order to improve patient and caregiver lives.     

An exploration of the burden experienced by spousal caregivers of individuals with Parkinson's disease

Although previous research has attempted to identify the needs of caregivers for individuals with Parkinson's disease (PD), most has focused on the demands associated with the physical needs of the patient, and not on “mental burden.” This study used the repertory grid method to capture the full range of caregivers' subjective experience, quantify their perceptions, and to acquire information that might be useful in directing remediation attempts. Within this sample, caregivers reported far greater burden from “mental stress” (e.g., worrying about individual's safety) than from “physical stress” (e.g., lifting individual into bed). Specifically, caregivers were primarily concerned about spousal safety, as this requires continuous vigilance and constant worry. Caregivers also reported experiencing “little deaths” as the disease progresses, related to a loss of independence for the couple, and the steady diminishment of social networks. Increasing attention on the mental burden experienced by spousal caregivers promises to increase quality of care, and quality of life for individuals with PD, by improving quality of life for the caregiver. © 2010 Movement Disorder Society     

Neuropsychiatric symptoms as a predictor of caregiver burden in Alzheimer’s disease

Aims

Patients with Alzheimer’s disease need assistance and supervision of their daily activities. They survive for protracted periods of time, placing an extensive burden of care on the caregiver prior to the patient’s death. The present study addressed the predictive value of behavior-related burden on Alzheimer’s disease caregivers.

Participants

82 patients with probable Alzheimer’s (73.7 ± 8.1 years), and their primary caregivers (59.6 ± 14.8 years, 81.5% women), were assessed.

Methods

Cognitive impairment, neuropsychiatric symptoms, and dementia severity were assessed with Mini Mental State Examination (MMSE), Neuropsychiatric Inventory (NPI), and Clinical Dementia Rating (CDR), respectively. Caregivers were given Zarit’s Burden Interview and Carer Activity Inventory.

Results

Neuropsychiatric symptoms like delusions, hallucinations, restlessness, anxiety, euphoria, disinhibition, unusual motor behavior, sleep disturbances, and appetite alterations were the best caregiver burden predictors (NPI r = 0.482, p < 0.001). No correlation with cognition, disease stage, or negative neuropsychiatric symptoms (depression and apathy) was found.

Conclusion

Increased caregiver burden was related to increased levels of patient behavioral disturbance. Of these symptoms, hallucinations, unusual (motor) behavior, and abnormal behavior at nighttime were the most significant. No correlation with neuropsychiatric symptoms such as apathy and depression was found. This may have relevance to appropriate interventions for caregivers.     

Determinants of quality of life in Brazilian patients with Parkinson's disease.

Our objective was to identify determinants of health-related quality of life (HRQoL) in a cohort of Brazilian patients with Parkinson's disease (PD). Patients were evaluated by means of the Hoehn and Yahr staging (H&Y), Unified Parkinson's Disease Rating Scale (UPDRS), Schwab and England scale (S&E), Mini-Mental State Exam, Geriatric Depression Scale, and Hospital Anxiety and Depression Scale (HADS). HRQol was assessed using the MOS-Short-Form 36 (SF-36), the Parkinson's disease Questionnaire (PDQ-39), and the Scales for Outcomes in Parkinson's Disease-Psychosocial Questionnaire (SCOPA-PS). 144 patients were evaluated (mean age 62 years; 53.5% men; mean duration of illness 6.6 years; median H&Y, 2 (range: 1-4). Mean SCOPA-PS and PDQ-39 Summary Index (SI) were 39.2 and 40.7, respectively. Both, PDQ-39 and SCOPA-PS SIs correlated at a moderate level (r = 0.30-0.50) with H&Y, S&E, total UPDRS, HADS subscales, and SF-36 Physical and Mental Components. PDQ-39 and SCOPA-PS were closely associated (r = 0.73). HRQoL significantly deteriorated as H&Y progressed, as a whole. Mood disturbances, disability, motor complications, and education were independent predictors of HRQoL in the multivariate analysis model. In PD Brazilian patients, HRQoL correlated significantly with diverse measures of severity. Depression showed to be the most consistent determinant of HRQoL, followed by disability, motor complications, and education years. There was a close association between the PDQ-39 and SCOPA-PS summary scores.     

Investigating burden of informal caregivers in England,Finland and Greece: an analysis with the short form of the Burden Scale for Family Caregivers (BSFC-s)

Objectives: The burden of informal caregivers might show itself in different ways in different cultures. Understanding these differences is important for developing culture-specific measures aimed at alleviating caregiver burden. Hitherto, no findings regarding such cultural differences between different European countries were available. In this paper, differences between English, Finnish and Greek informal caregivers of people with dementia are investigated.

Methods: A secondary analysis was performed with data from 36 English, 42 Finnish and 46 Greek caregivers obtained with the short form of the Burden Scale for Family Caregivers (BSFC-s). The probabilities of endorsing the BSFC-s items were investigated by computing a logit model with items and countries as categorical factors. Statistically significant deviation of data from this model was taken as evidence for country-specific response patterns.

Results: The two-factorial logit model explains the responses to the items quite well (McFadden's pseudo-R-square: 0.77). There are, however, also statistically significant deviations (p < 0.05). English caregivers have a stronger tendency to endorse items addressing impairments in individual well-being; Finnish caregivers have a stronger tendency to endorse items addressing the conflict between the demands resulting from care and demands resulting from the remaining social life and Greek caregivers have a stronger tendency to endorse items addressing impairments in physical health.

Conclusion: Caregiver burden shows itself differently in English, Finnish and Greek caregivers. Accordingly, measures for alleviating caregiver burden in these three countries should address different aspects of the caregivers’ lives.