Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving

Objectives: This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong.

Method: Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition.

Results: As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress.

Conclusion: As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.     

Appraisal of caregiving, burden and psychological distress in relatives of psychiatric inpatients.

Appraisal of caregiving and its relationship to family burden and experienced mental health problems in the relatives were investigated as part of a multi-centre study of the quality of mental health services in Sweden performed in 1997. The sample was drawn from relatives of involuntarily and voluntarily admitted patients to acute psychiatric wards. The instrument used was a semi-structured questionnaire, interviewing relatives about the burden, experience of mental health problems and appraisal of the caregiving situation. The results showed a high proportion of relatives engaged in caregiving activities on a daily basis the month before the patient's admission to hospital and a high proportion of relatives appraising the caregiving activities negatively. The burden was more extensive if the relative and the patient were living together, had a longer duration of their relationship, if the relative was rendering caregiving on a daily basis and if the relative appraised caregiving negatively. The relatives' psychological distress was not related to their negative appraisal of caregiving, nor was patient characteristics, such as diagnosis and level of psychosocial functioning. The only factor found to influence the relatives' psychological distress was the duration of relationship to the patient. Interventions reducing psychological distress for relatives who have known the patients for more than 20 years, who live with the patient, who give care on a daily basis and who appraise their caregiving negatively are suggested.     

Caregiver burden and coping

Introduction Caregivers of patients of schizophrenia and bipolar affective disorder (BAD) experience considerable burden while caring their patients. They develop different coping strategies to deal with this burden. Longitudinal studies are required to assess the relationship between caregiver burden and coping. Aim The present study was conducted to assess relationship between burden and coping in caregivers of clinically stable patients with schizophrenia and BAD. Method One hundred patients each of schizophrenia and BAD attending a psychiatric outpatient setting and their caregivers were followed up for a period of 6 months. Burden and coping strategies were assessed in the caregivers at baseline, and after 3 and 6 months using the Burden Assessment Schedule (BAS) and Ways of Coping Checklist - Hindi Adaptation (WCC - HA). Results Burden remained stable over 6 months and was comparable in the two groups of caregivers. Caregivers from both the groups were found to use problem focused coping strategies more often than seek social support and avoidance strategies. Scores on avoidance type of coping showed a positive correlation with the total burden scores and a number of burden factors. Conclusion Caregivers of patients of schizophrenia and BAD face similar levels of burden and use similar types of coping methods to deal with it. Relationship between caregiver burden and coping is quite complex.     

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.     

Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community

BACKGROUND: Despite many studies about the association between caregiver burden and behavioral and psychological symptoms of dementia (BPSD), there have been no population-based studies to evaluate caregiver burden associated with each BPSD. OBJECTIVE: To evaluate caregiver burden associated with the individual BPSD in elderly people living in the community. METHODS: The subjects were 67 participants with dementia living with their caregivers (diagnosed in the third Nakayama study): 51 Alzheimer's disease, 5 vascular dementia and 11 other. The Neuropsychiatric Inventory (NPI) and NPI Caregiver Distress Scale (NPI-D) were used to assess subjects' BPSD and related caregiver distress, respectively. RESULTS: In the subjects exhibiting BPSD, aberrant motor behavior had the highest mean NPI score, and depression/dysphoria had the lowest. Agitation/aggression had the highest mean NPI-D score, and euphoria/elation had the lowest. Delusion, agitation/aggression, apathy/indifference, irritability/lability and aberrant motor behavior showed a correlation between the NPI and NPI-D scores. CONCLUSION: The burden associated with BPSD is different for each symptom and does not always depend on frequency and severity of BPSD. These findings suggest that some symptoms, such as agitation/aggression and irritability/lability, may affect the caregivers significantly, although their frequency and severity are low.     

Caregiver physical and mental health predicts reactions to caregiving

Self-reported health and reactions to providing care to older adults with cognitive or physical impairments were examined. Health status was examined on a single occasion in 177 persons (aged 63-94 years) referred to programs within a comprehensive set of geriatric care services and the 133 family members involved in their care (ages 31-96 years). The five-scale Caregiver Reaction Assessment (CRA) was administered to the family members. Reliability analyses revealed that the CRA had good internal consistency. Being older was related to experiencing greater health problems in the caregiver role. Greater health problems from providing care were reported by caregivers in worse physical health and also when the care recipient had more physical pain. Caregivers who reported fewer health problems attributed to caregiving reported better mental health and less depressive symptomatology. Caregivers with health problems may be at increased risk of suffering from stress from caregiving.     

Caregiver burden and patients' perception of being a burden in ALS

The determinants of ALS caregiver burden and the feeling of the patients as being a burden were assessed using the Caregiver Burden Inventory and the Self-Perceived Burden Scale in 60 caregiver-patient couples. Caregiver burden was correlated to their level of depression and quality of life and, differently from other chronic disorders, increased with the worsening of patients' disability. ALS patients have a good objective perception of their impact on caregivers.     

Caregiver burden and disability in somatization disorder

Objective

Authors assessed disability and caregiver burden in patients with somatization disorder (SOM-D), and compared it with that in patients with schizophrenia and chronic depression.

Methods

The sample consisted of 30 patients diagnosed as SOM-D as per ICD 10 Diagnostic Criteria for Research (ICD-10-DCR), and 30 age- and gender-matched patients each of schizophrenia and depression, who served as comparison groups. Disability and caregiver burden were assessed using WHO's Disability Assessment Schedule (WHO-DAS) and the Family Burden Assessment Schedule (FBAS) respectively. Functioning and severity of illness were assessed on the Global Assessment of Functioning scale (GAF) and Clinical Global Impression scale (CGI) respectively.

Results

Severity of illness in patients with SOM-D was comparable to that in the comparison groups. Patients with SOM-D scored higher on total disability on WHO-DAS than the patients with schizophrenia and depression, though scores on family burden were comparable. Disability in patients with SOM-D was more in females, less educated, older and those working at home, compared to the other demographic groups.

Conclusion

Patients with SOM-D suffer considerable disability due to illness and impose significant burden on their caregivers, comparable to that seen in severe mental illnesses like schizophrenia and chronic depression.     

Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms

Background

We studied the level of distress in caregivers of patients with recently diagnosed multiple sclerosis (MS), and their relation to clinical characteristics.

Methods

Caregivers of patients with MS and Parkinson''s disease completed measures of distress and quality of life. MS patients underwent neurological, neuropsychiatric and neuropsychological examinations. Multivariate regression analyses were used to explore the relationship between patient variables and caregiver distress.

Results

Caregivers of patients with MS experienced high levels of distress and reduced quality of life related to caregiving. The level of distress was similar to that reported by elderly spouses of patients with longstanding Parkinson''s disease. Psychiatric symptoms and cognitive impairment in patients with MS were associated with caregiver''s distress and quality of life, even after controlling for level of disability (all p values <0.01). Patients'' physical impairment was associated with caregiver distress, but not with caregiver quality of life.

Conclusion

Caregivers of patients with MS experience high levels of distress and reduced quality of life. Psychiatric symptoms and cognitive impairment contributed significantly to caregiver distress, over and above the effect of disability due to neurological symptoms.At the time of diagnosis, many patients with multiple sclerosis (MS) are in stable relationships, which are inevitably affected by the advancing disease. The partners have to cope with not only the presence of the disease, but the added fact of an unpredictable prognosis, including the possibility that their partner may become severely physically and cognitively impaired.^1,2,3 They therefore face lifestyle and role adjustments that can give emotional distress and reduced quality of life.⁴Studies in other neurological diseases such as Alzheimer''s disease and Parkinson''s disease (PD) have shown that caregiving is associated with a high degree of emotional and social distress,⁵ and that both mental and physical symptoms manifest as a result. Furthermore, caregiver distress has important implications for institutional placement⁶ and even the course of the disease.^7,8Few studies have explored the strain on caregivers of MS patients, and most of the studies undertaken so far have had important methodological limitations related to small and selected patient samples.^9,10,11,12 Furthermore, most studies have usually not employed quantitative research methods, but rather unstructured indepth interviews¹¹ or focus group interviews.¹² A recent systematic review of the needs and experiences of caregivers of MS patients showed that providing care for a person with MS can have a detrimental effect on the caregiver''s psychological health.¹³ Thus there is a need for effective interventions towards helping caregivers continue their essential role but also maintaining themselves in the process.¹³In this study, we investigated the level of distress and effect on quality of life experienced by caregivers of a representative and well characterised cohort of recently diagnosed MS patients. In addition, we explored the relationship between caregiver distress and patients'' neurological, psychiatric and cognitive symptoms. We hypothesised that (1) caregivers would report adverse effects on their psychological and social health and that (2) there is a relationship between the clinical presentation of MS and the type of caregiver distress. Specifically, we hypothesised that the level of burden related to caregiving would correlate with degree of physical impairment, while the caregivers emotional distress would be associated with the severity of psychiatric and cognitive disturbances.     

Caregiver burden in dementia care: Prevalence and health effects

Caregiving stress is caused by both primary stressors (care recipient characteristics) and secondary stressors (family and work issues), and depends on the caregiver’s evaluation of the balance between demands and his or her ability to meet them. The types of burdens caused by caregiving are developmental, physical, social, emotional, and time dependence. Psychiatric consequences of caregiving include high incidence of depression and anxiety disorders. Physical consequences are caused by chronic stress that results in activation of the hypothalamic-pituitary-adrenal axis and impairment of immunologic functions. Caregiving stress does not end by institutionalization of the care recipient and continues even after the care recipient’s death.     

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.     

Caregiver burden and coping in early-stage Alzheimer disease

This study was set out to describe caregiver-perceived burden and coping in early-stage Alzheimer disease (AD). A total of 163 consecutive pairs of patients with AD and their principal caregivers were initially recruited. The caregivers completed the Caregiver Burden Inventory (CBI) and the Coping Orientations to Problems Experienced scale, and also provided sociodemographic information; the patients with AD were assessed by means of the Mini Mental State Examination and the Neuropsychiatric Inventory. Data from 126 patient-caregiver pairs were analyzed. The caregivers (mean age 56.11±12.37 y) were mainly women (76%); 64% were the patient's offspring; 39% lived with the patient. From the CBI data, it emerged that caregivers perceived loss of personal time (objective burden, 33%) and the feeling of missing out on opportunities (developmental burden, 25%) as their main stressors. Total CBI score was negatively correlated with Mini Mental State Examination (P=0.005). As regards coping strategies, the caregivers predominantly used problem-oriented strategies associated with a positive attitude. The use of dysfunctional strategies was predictive of caregiver burden. It is important to be aware that avoidance and dysfunctional coping strategies predispose caregivers of patients with AD to higher level of distress, whereas successful caregiving seems to be based on the use of problem-oriented strategies early in the disease when solutions are still available.     

Caregiver psychoeducation for schizophrenia: Is gender important?

INTRODUCTION: Females care for individuals with chronic illness more commonly than males and have different attitudes to illness. Additionally, they experience greater burden and reduced quality of life, when compared to their male counterparts. Since knowledge has been shown to be related to burden, we sought to determine whether there were gender differences in knowledge acquisition during a six-week caregiver psychoeducation programme (CPP). METHODS: Caregivers of people with schizophrenia completed a 23-item adapted version of the self-report Family Questionnaire (FQ) before and after the six-week CPP. Using a Generalized Linear Mixed Model, we studied the differences in proportions of correct answers before and after the programme by gender. RESULTS: Over a 46-month study period, 115 caregivers (58% female) participated in the programme. There was an overall improvement in knowledge with an effect size of 1.12. The improvement was statistically significant (P<0.001) within each of six specific areas of knowledge. However, female caregivers gained more knowledge overall and specifically regarding signs and symptoms, recovery and especially caregiver support. Knowledge gains regarding medication were roughly equal, while male caregivers gained more knowledge about risk factors. DISCUSSION: Our findings indicate that there are gender differences in the amount and type of knowledge gained during a CPP, with female caregivers showing greater knowledge acquisition than their male counterparts in most areas. Interventions designed to assist caregivers may be improved by targeting areas of knowledge specific to each gender. Such an approach might further reduce burden and improve the outcome for their relatives affected by schizophrenia.     

The caregiving burden scale among Chinese caregivers of Alzheimer patients.

From April 1996 to January 1997, a total of 76 Alzheimer's disease (AD) patients and their caregivers were recruited for participation in a comprehensive assessment at the Veterans General Hospital-Taipei, a 2,198-bed tertiary-care teaching hospital in Taipei, Taiwan. The AD patients responded to the Chinese version of the Cognitive Abilities Screening Instrument. Primary caregivers rated the patients using the Symptom Check List-90 (SLC-90) and the Revised Memory and Behavior Problems Checklist and then rated themselves with the caregiving burden scale (CBS), coping strategies scale and the short version of the Geriatric Depression Score (GDS-S). The internal consistency of the CBS, as assessed by Cronbach's alpha, was 0.849. The correlations between the CBS, SCL-90 and GDS-S ranged from 0.435 to 0.698. The CBS scores increased with disease progression and were higher among spouse caregivers than adult children caregivers. Multiple-regression analysis revealed that caregivers with higher CBS scores were more likely to have lower education levels and to use the meaning subscales of coping strategies, and that these caregivers' patients had greater disruptive behavior and were older (R2 = 0.727, p = 0. 001). The current study establishes the reliability and validity of the Chinese version of the CBS for assessment of Chinese caregivers of AD patients.     

A little knowledge: Caregiver burden in schizophrenia in Malawi

OBJECTIVE: To determine the relationship between schizophrenia knowledge and burden of care among caregivers of people with schizophrenia in Mzuzu, Malawi. METHOD: We recruited 90 patients and 90 caregivers to a randomized, controlled trial of group caregiver education in schizophrenia. At baseline, we administered the Family Questionnaire, which measures caregivers' knowledge of biomedical and psychosocial aspects of schizophrenia. We measured caregiver burden with the Involvement Evaluation Questionnaire. Using multivariate analysis, we examined the relationship between knowledge and burden, controlling for other patient and caregiver variables. We hypothesised that knowledge and burden would be inversely related. RESULTS: Caregiver burden was associated with knowledge (p = 0.001), but contrary to our hypothesis, greater knowledge was associated with greater burden. CONCLUSION: In this population, knowledge about schizophrenia was associated with higher caregiver burden. This does not prove that knowledge causes burden, but suggests that cultural factors may mediate the relationship between knowledge and burden, and that care is needed when introducing caregiver education in new cultures.     

Caregiver burden in chronic mental illness: the role of patient and caregiver characteristics

The aim of the present study is to identify the relative contribution of patient and caregiver characteristics in a sample of primary carers of patients with chronic mental disorders living in the community. As carers were recruited from caregiver organizations, mainly mothers of an adult child suffering from schizophrenia participated in the study (n = 102). Within a comprehensive transactional stress model, burden was assessed with respect to objective and subjective burden, cognitive-emotional well-being, psychological distress and subjective quality of life. Primary stressors include illness-related characteristics of the patient, and a number of personal dispositions and resources of the caregivers were included as potential moderating variables. Multiple regression analyses were separately calculated for each dimension of burden. Interaction of carers’ expressed emotion and external locus of control with the patient’s problem with family communication as well as perceived social support was most predictive for objective and subjective burden, whereas carers’ neuroticism appeared as the most relevant predictor of their well-being, psychological distress and subjective quality of life. Among the patients’ variables, regular employment contributed significantly to reduce carers’ distress and enhance their well-being. As the sample was recruited from caregiver organizations, a selection bias has to be taken into account. To reduce caregiver burden, especially mothers’ burden, the patients’ occupational abilities should be strongly enhanced at an early stage. Family interventions should improve dysfunctional interactions, enhance the carers’ social activities and focus more intensely on the carers’ own dispositions.     

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.