Comparison of caregiver strain in Parkinson's disease between Yamagata,Japan, and Maryland,The United States

BackgroundJapan and the United States (US) have different cultures of caregiving including differences in family structure and social programs that may influence caregiver strain. Differences in caregiver strain between regions in Japan and in the US have not been investigated in patient–spouse dyads in PD.ObjectivesTo compare caregiver strain in spouses of PD patients between Yamagata, Japan and Maryland, US. Correlations between caregiver strain and patient/spousal variables are also examined.MethodsIn Yamagata and Maryland, spouses of patients with PD completed questionnaires assessing caregiver strain. Patients and spouses completed scales assessing mental health, and medical co-morbidity. PD severity and disability were assessed with the Unified Parkinson's Disease Rating Scale and the Schwab and England Activities of Daily Living Scale. Results in the two regions were compared with Chi-square and Student's t-tests. Relationships between caregiver strain and patient/spousal variables were analyzed with univariate correlations and multivariate regression.Results178 Spouse–patient pairs were assessed. The level of caregiver strain in PD did not differ between Yamagata, Japan and Maryland, US despite differences in demographics and social support programs in the two regions. Yamagata spouses reported physical, time and financial constraints, while Maryland spouses reported more emotional distress. In both regions, spousal depression was a significant contributor to caregiver strain.ConclusionDifferent approaches to reduce caregiver strain will likely be necessary in Yamagata and Maryland since the contributing factors to caregiver strain are influenced by differences in culture and social supports in each country.     

Cyclophosphamide as second-line therapy in multiple sclerosis: benefits and risks

Aim of this study was to determine the predictors of caregiver burden among spouse caregivers of patients with Parkinson’s disease (PD). Forty consecutive PD patients and their spouse caregivers were included. Patients were assessed using the Unified Parkinson’s Disease Rating Scale (UPDRS), the Hoehn and Yahr scale (HY), the Mini-Mental State Examination (MMSE), the Neuropsychiatric Inventory (NPI), and the Geriatric Depression Scale (GDS). Stress and depressive symptoms among caregivers were evaluated using the Caregiver Burden Inventory (CBI) scale and the GDS. Only PD severity (HY) and mental symptoms (NPI) were significantly associated to caregiver distress. A major attention must be given to the early identification of factors generating stress in caregivers in order to improve caregiver quality of life and patient’s care. M. D’Amelio and V. Terruso equally contributed to the study.     

Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early‐stage Parkinson's disease

Family care research has identified negative outcomes of providing care to a spouse with Parkinson's disease (PD), such as declining physical and mental health. Research has also identified protective variables that decrease negative outcomes such as high mutuality and rewards of meaning. It is important for clinicians to identify “at risk” family caregivers and provide earlier interventions. Despite the importance of age and developmental stage there is a paucity of research comparing young versus older spouse caregivers. This study compared the difference in negative aspects of strain and modulators of strain in young and older PD spouse caregivers. A series of hierarchical multiple regressions were used to examine the contribution of age on both positive and negative aspects of the care situation for 65 (37 young, 28 old) PD spouse caregivers. Negative variables included 3 dimensions of strain; strain from lack of personal resources, strain from worry, and global strain. Positive or protective variables included mutuality, preparedness, and rewards of meaning. Even in early stage disease before significant care is required, young spouses (40–55) were found to be at greater risk for negative consequences of the care situation reporting significantly more strain from lack of personal resources, and lower levels of mutuality and rewards of meaning than older (greater than 70) spouses. As expected, young spouses were more likely to be working, caring for children in the home, and in better physical health than older spouses. Clinicians are well‐situated to identify the unique needs of young spouses and intervene early in the caregiving trajectory. These findings provide ideas for targeted interventions. Future larger studies that compare young and older spouses should include later stage disease to more fully understand the developmental differences raised by the present findings. © 2010 Movement Disorder Society     

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     

The evolution of disability in Parkinson disease

The objectives of this study are to assess the level of disease severity associated with disability in Parkinson disease (PD) and the sequence of loss of independence in basic and instrumental activities of daily living (ADLs and IADLs). Six hundred eighteen patients with PD were evaluated for disease severity with the Unified PD Rating Scale (UPDRS) and for disability with the Older Americans Resource and Services Disability Subscale (OARS). The association between patient‐reported disability on ADLs and IADLs and level of disease severity on the total UPDRS was examined cross‐sectionally. Disability, with loss of independent function is reported between total UPDRS scores 30 to 40, and HY stages II to III. Difficulty with daily activities, without loss of independent function is reported earlier, at UPDRS <20 and HY I to II. Difficulty with walking is initially reported, followed by problems with a number of gait‐dependent activities including housework, dressing, transferring in and out of bed, and traveling in the community. The transition from HY stage II to III marks a pivotal milestone in PD, when gait and balance impairment results in disability in many gait‐dependent activities. The onset of disability in PD can be identified by asking patients about their walking, housework, dressing, and traveling. While individual patients vary in progression, the benchmarks of disability in this study provide guidance when counseling patients about prognosis. Better understanding of the stages of disability may facilitate the development of novel outcome measures in clinical trials in PD. © 2008 Movement Disorder Society     

Longitudinal study of the socioeconomic burden of Parkinson’s disease in Germany

Objective: To determine the health economic burden on patients with Parkinson’s disease (PD) in Germany over a 12‐month observation period and provide a comprehensive analysis of cost‐driving factors. Methods and patients: Patients with PD (n = 145) were recruited from two clinical departments, two office‐based neurologists and 12 GPs. Clinical evaluations were performed at baseline, 3, 6 and 12 months. Disease severity was measured using the Unified Parkinson’s Disease Rating Scale (UPDRS). Cost data were assessed based on a patient diary and via personal structured interviews at the respective time‐points. Costs were calculated from the societal perspective (2009 €). Cost‐driving factors were identified by multivariate regression analysis. Results: Mean annual costs totalled €20 095 per patient. Amongst direct costs, the highest expenditures (€13 158) were for drugs (€3526) and inpatient care including nursing homes (€3789). Indirect costs accounted for 34.5% (€6937) of total costs. Costs of home care provided by family accounted for 20% of direct costs. Cost‐driving factors were identified for total costs (UPDRS, fluctuations, dyskinesia and younger age), direct costs (UPDRS, fluctuations), patient expenditures (UPDRS, depression) and drug costs (younger age). Conclusion: Parkinson’s disease has a chronic course with growing disability and considerable socioeconomic burden. Disease progression leads to an increasing number of patients who require costly institutionalized care. Home care is a major factor influencing patients’ families. Healthcare programmes aimed at reducing the burden of PD on society and individuals should consider cost‐driving factors of PD.     

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.     

The role of marital interaction in chronic pain and depressive symptom severity

Several investigators have noted the moderating role of the spouse in determining the severity and disability associated with the experience of chronic pain. In this study, pain-contingent responses from spouses, but not global marital satisfaction, accounted for a significant proportion of the variance in reported pain severity. Global marital satisfaction predicted depressive symptom severity. The interaction between global marital satisfaction and the reported frequency of punishing responses to pain behavior added significantly to the prediction of depressive symptoms. Similarly, the interaction between marital satisfaction and degree of spouse solicitousness significantly predicted pain severity. These results are consistent with evolving literatures on the important relationship between marital distress, aversive communication and depression on the one hand, and the potentially deleterious role of the solicitous spouse in the maintenance of chronic pain on the other.     

Mental health problems and marital disruption: is it the combination of husbands and wives’ mental health problems that predicts later divorce?

BACKGROUND: Divorce has been established as an adverse social consequence of mental illness. There is, however, little research that has considered how the mental health of both spouses may interact to predict relationship disruption. The aim of the current study was to use data from a large population-based survey to examine whether the combination of spouses' mental health problems predicts subsequent marital dissolution. METHODS: Prospective analysis of data from a longitudinal national household survey. 3,230 couples were tracked over 36 months, with logistic regression models used to determine whether the mental health problems of both spouses at wave 1 (determined by the SF36 mental health subscale) predicted subsequent relationship dissolution. RESULTS: Couples in which either men or women reported mental health problems had higher rates of marital disruption than couples in which neither spouse experienced mental health problems. For couples in which both spouses reported mental health problems, rates of marital disruption reflected the additive combination of each spouse's separate risk. Importantly, these couples showed no evidence of a multiplicative effect of mental illness on rates of subsequent divorce or separation. CONCLUSIONS: The results do not support the notion that a combination of mental health problems in both spouses uniquely predicts marital dissolution. Rather, there is an additive effect of individual mental health problems on the risk of dissolution.     

影响帕金森病患者生活质量的因素

目的探讨影响帕金森病(PD)患者生活质量的因素。方法采用PD生活质量问卷(PDQL)、PD统一评定量表(UPDRS)、Hoehn-Yahr分期、Schwab-England残疾量表、汉密顿抑郁量表(HAMD)对71例PD患者的生活质量、疾病严重程度、日常生活能力、运动反应、精神状态及治疗并发症等指标进行评估,结合患者的年龄、性别、起病情况、吸烟、左旋多巴剂量、症状波动等因素评价其对生活质量的影响。结果一元相关分析显示:病程越长、治疗时间越久、左旋多巴剂量越大、UPDRS各项评分、Hoehn-Yahr分期越高,以及有抑郁或症状波动的PD患者生活质量越差(P<0.05～0.01)。逐步回归分析显示:影响PD患者生活质量的主要因素是患者的情感功能,其次是疾病的严重程度。结论情感功能是影响PD患者生活质量最重要的因素。     

Caregiver burden in Parkinson's disease.

Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being.     

Anxiety disorders in Parkinson's disease: Prevalence and risk factors

Anxiety disorders are common in Parkinson's disease (PD) patients, yet are poorly studied. We examined the prevalence of anxiety disorders in PD, investigated the association between anxiety, and presentation and progression of PD, and studied for the first time the contribution of putative risk factors for anxiety in PD. A case‐series of 79 PD patients recruited from neurology out‐patient clinics was examined for anxiety disorders using the DSM‐IV criteria. The Unified Parkinson's Disease Rating Scale and the Hoehn and Yahr Staging of PD were employed to understand the relationship between anxiety disorders, and the clinical presentation and severity of PD. A validated survey assessed putative risk factors for anxiety in PD. Twenty‐five percent of PD patients were diagnosed with anxiety. Panic disorder, generalised anxiety disorder and social phobia were prevalent anxiety disorders. Comorbid depression with anxiety was observed (14%). The severity but not the duration of PD was positively related to anxiety. PD patients with postural instability and gait dysfunction symptom clustering were more likely to experience anxiety than tremor‐dominant patients. While levodopa dosage had no relationship to anxiety, experience of dyskinesias or on/off fluctuations increased the risk. Lateralisation of PD had no association with anxiety. Anxiety disorders decreased with age and young onset PD patients were more likely to experience anxiety than the late onset subjects. Anxiety adds to the complexity of PD, lowering patients' quality of life. Future research can be directed to identify reactive and organic nature of anxiety in PD. © 2010 Movement Disorder Society     

Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.     

Predictors of depressive symptoms among spouse caregivers in Parkinson's disease.

The objective of this work was to determine the predictors of depressive symptoms among spouse caregivers of Parkinson's disease (PD) patients. Little is known about the strain in giving care to PD patients and how the motor, cognitive, and behavioral complications of PD contribute to depression among spouse caregivers. Forty-five consecutive PD patients and their spouse caregivers agreed to be evaluated after a routine clinic visit. Patient demographic data and the presence of hallucinations, delusions, incontinence, and sleep disturbances were obtained. The patients were assessed using the Unified Parkinson's Disease Rating Scale (UPDRS-motor section), Hoehn and Yahr (H&Y) staging, and the Mini-Mental State Examination (MMSE). Depressive symptoms were assessed using the 17-item Hamilton Depression Scale (HAMD-17) and the Beck Depression Inventory-II (BDI-II) on patients and spouses. Thirty men and 15 women had a mean age of 71.5 years (range 53-85), average PD duration of 10 years (range 1-26), a mean "on" H&Y stage of 2.8 and an MMSE mean score of 26 (range 13-30). There was good correlation between the HAMD-17 and the BDI-II scores in both patients (r = 0.69, P = 0.001) and spouses (r = 0.66, P < 0.001). A moderate correlation was noted between the spouse HAMD-17 score and the patient UPDRS-motor score (r = 0.34; P = 0.02), the age of PD onset (r = 0.33; P = 0.02) and patient HAMD-17 scores (r= 0.29; P = 0.05). A stronger correlation was noted between spouse HAMD-17 scores and the years of PD duration (r= 0.43; P = 0.003). There was a significant difference in the mean spouse HAMD-17 scores among PD patients with sleep disturbances versus those who did not (10.2 vs. 6.4; P = 0.04). However, on stepwise regression analysis, only the duration of PD remained significant (adjusted r = 0.17; P = 0.003). No difference was noted with hallucinations, delusions or incontinence. We concluded that the duration of PD appears to be the strongest predictor of depressive symptoms among spouse-caregivers in this small cohort.     

Risk factors for stress in elderly caregivers

This cross-sectional study examined 99 elderly coresident stroke and dementia caregivers who had been in the caregiving role for at least 6 months, to identify risk factors for subjective burden and psychological morbidity. A worsening in the quality of relationship between the caregiver and patient, being a spouse, shorter length of caregiving, poor caregiver self-rated health, greater physical disability and behaviour/mood disturbance in the patient were found to be risk factors for burden. For psychological morbidity, risk factors also included behaviour/mood disturbance as well as female gender and low participation in life activities. These results demonstrate the multifactorial nature of caregiver stress in the elderly.     

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 comparison of burden between caregiving spouses of depressive and demented patients

BACKGROUND: The opportunities for a depressive or demented elderly patient to live at home are dependent on the availability of support. If the spouse is alive, her or his resources to care for the patient are an essential option. In this study we compared the burden of the spouses of depressive and demented elderly patients admitted to the University Psychogeriatric Clinic. METHODS: The Zarit Burden Interview was used when comparing the burden between the groups. Psychological distress was screened by the 12-item General Health Questionnaire. The care and support given by the spouse was assessed by Involvement Evaluation Questionnaire. The spouse's stress related to the health state of the patient was evaluated by the Pearlin Caregiving Stress Inventory. Twenty-two spouses living with a depressive patient and 43 with a demented patient were included in the study. RESULTS: The spouses of demented patients as a group were psychologically more stressed than the spouses of depressive patients. However, when demented patients were divided into two groups, in those admitted mainly for noncognitive symptoms related to dementia and in those admitted for memory assessment and diagnostic purposes, the burden of the spouses in the former group was higher than that of the group of depressive patients' spouses. No difference was found between the latter group of demented patient spouses and depressive patients' spouses. Both the patients and the spouses in the demented group were older than those in the depressive group. However, no correlation was found between stress of the spouse and her or his own age or the age of the patient either within the depressive or within the demented group. As expected, the function level of demented patients was lower than that of depressive patients. A correlation was found within both groups between low functional capacity of the patient and the stress of the spouse. In both groups the spouses who felt their own mental health to be poor were more likely to have high levels of burden. CONCLUSIONS: Among the general psychogeriatric patient groups, the caregiving spouses of demented patients with noncognitive psychiatric symptoms are the most burdened group. However, spouses of depressive patients are as much burdened as those of demented patients with mild to moderate memory impairment. More support is needed for every spouse group caring for psychogeriatric patients.     

Spouse caregivers of Alzheimer patients: problem responses to caregiver burden

This paper reports on comparisons of patterns of responses by 199 spouses of Alzheimer disease patients to stresses of functioning as caregivers. Focusing on gender and age of spouses, we examine effects of the total burden of caregiving and perceived patient problems on a set of emotional and social responses of caregivers. We also examine ways in which depressive symptoms and anxiety of spouse caregivers were associated with patterns of their responses to caregiving stresses. Total patient problem burden was most strongly associated positively with caregiver anger-resentment toward the patient, followed by caregiver concerns about personal time restriction and limitation of social life. Among individual areas of patient problems, emotional lability of the patient rather than cognitive impairment appeared strongest by far in affecting caregiver response measures. Negative impact of caregiving on their social life and associations appeared to have particularly marked effects on effects on caregiver depressive symptoms and anxiety scores. Spouse caregivers did not differ by age in clinically significant ways in their patterns of reaction to stresses of caregiving. The study suggests the importance of considering potential spouse caregiver reactions in such areas as anger and aggressive response to patients, the impact of feelings of social deprivation and personal sacrifice, as well as the implications of caregiving stresses for patient care and maintenance of family cohesion and quality of life.