Psychosocial aspects of caregiving to stroke patients

A high percentage of individuals who have suffered a stroke will be cared for at home, primarily by aging spouses and/or relatives. Providing care to a family member with a chronic or life-threatening condition can be both emotionally rewarding and distressing for the care provider. The objective of this research was to test the factors associated with caregiver experiences. The findings of a convenience sample of 48 caregivers indicated that the higher the amount of caregiver burden, the greater the lifestyle impact and emotional distress for the caregiver. Caregiver satisfaction was not found to be associated with emotional well-being. The amount of support, both instrumental and social, did not improve the emotional well-being of the caregiver. The caregiver's sense of mastery was found to moderate the relationship between lifestyle impact and emotional well-being and also between caregiver satisfaction and emotional well-being.     

Caregiving consequences in mental disorders--definitions and instruments of assessment

Severe mental illnesses have far-reaching consequences for both patients and their relatives. This paper reviews literature on the measures of caregiving consequences. Authors provide a condensed knowledge and research results in the area of caregiving consequences, especially both subjective and objective caregivers' burden. The consequences of care apply to carers' social and leisure activities, financial status, health condition. The burden of care has three fundamental causes: the reorganisation of mental health services, a social isolation of patients and their families and the lack of systemic support for caregivers. The problem of caregiving consequences has been investigated in several studies. In order to identify factors, which have impact on caregiver distress, a variety instruments have been developed. This paper focuses on questionnaires useful for the systematic assessment of both objective and subjective burden: Involvement Evaluation Questionnaire (IEQ), Perceived Family Burden Scale (PFBS), Zarit Caregiver Burden Scale (ZCBS), Experience of Caregiving Inventory (ECI), Family Problems Questionnaire (FPQ). The mentioned instruments proved to be a reliable instrument for measuring caregiver consequences in mental healthcare.     

Mental symptoms in Parkinson's disease are important contributors to caregiver distress.

OBJECTIVE: To determine the emotional and social distress of caring for a patient with Parkinson's disease and to explore the impact of motor and mental symptoms in subjects with Parkinson's disease on their caregivers' situation. DESIGN: Cross-sectional, population-based study using self-report questionnaires to measure caregiver distress and rating scales to assess patient symptomatology. SETTING: Neurology and old age psychiatry services in Stavanger, Norway. SUBJECTS: Caregivers of 94 home-dwelling patients with Parkinson's disease. Two control groups (patients with diabetes mellitus and healthy elderly). OUTCOME MEASURES: Measures of social and emotional distress in caregivers, including the Relative Stress Scale, Beck Depression Inventory and the General Health Questionnaire. RESULTS: Caregivers, in particular spouses, had more severe depression and a higher proportion reporting tiredness, sadness and less satisfaction with life compared with healthy elderly subjects. Using linear regression analysis, patient predictors of caregiver distress were depression, functional and cognitive impairment, agitation, aberrant motor behaviour and delusions. CONCLUSIONS: Caring for a spouse with Parkinson's disease is associated with emotional and social distress, underlining the importance of also assessing the needs of carers. Mental symptoms of parkinsonian patients were the most consistent and powerful predictors of caregiver distress, suggesting that identification and treatment of mental symptoms may reduce distress in caregivers of subjects with Parkinson's disease.     

Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder

ObjectiveIndividuals with FASD experience neurodevelopmental impairments and adverse outcomes, which can result in stress on the caregiver. However, there is little research on the needs of caregivers supporting individuals with FASD and whether they are associated with caregiver stress.Method125 caregivers of individuals with FASD completed a survey with questions adapted from the Family Caregiver Survey and the Perceived Stress Scale.ResultsCaregivers reported a range of needs and concerns, and high levels of stress. In many areas of caregiver well-being concerns tended to be higher among caregivers with adolescents and adults compared to those with children. Foster parents reported fewer well-being concerns than biological/kinship and adoptive parents. Caregivers who cared for the individuals for longer periods of time reported the most well-being concerns and lowest satisfaction with supports. Caregivers with the lowest income reported higher levels of stress than those with higher incomes. Higher reported stress was highly correlated with more needs/concerns.ConclusionsCaregivers of individuals with FASD have multiple areas of need and concern, and experience high levels of stress. Reducing demands on caregivers and providing resources may help reduce caregiver needs and stress, particularly for those caring for adolescents and adults, and those with lower incomes.     

Factors related to cognitive reserve among caregivers of severe acquired brain injury

Stroke is one of the severe cause of motor and cognitive disabilities. These type of disabilities occurred a strong impact on whole family system. Caregiver burden may determine in relatives of patients with brain injury a decreasement of mental and physical health. The present study aims to better clarify the mechanism through which chronic stress influence caregivers’ cognitive functioning and how the psychological and cognitive resources may represent as a predictive factor. Caregivers were submitted to neuropsychological tests that evaluated level of mental health ad level of burden. Our results showed a significant correlation between cognitive reserve and self-efficacy skills in health care of patients. Findings suggested that the caregiver burden and the level of general distress influenced the cognitive performance. An improvement of cognitive functions is associated with a reduction of self-efficacy skills, causing a caregiver burden improvement.     

Living with a schizophrenic patient: a comparative study of burden as it affects parents and spouses

Based on the analysis of 42 in-depth interviews, this article highlights different aspects of the subjective burden experienced by parents and spouses of patients suffering from schizophrenia. The onset of a schizophrenic disorder and acute episodes during the later course of the disease lead to considerable emotional distress for the patients' caregivers. In everyday life with the patient, parents and spouses experience a comparatively less dramatic chronic burden, which nevertheless can severely affect their living situation and well-being. Caregivers often feel disappointed and dissatisfied with the information and cooperation offered by psychiatric institutions. Parents and spouses perceive the caregiver burden differently, although there are some apparent similarities. The study reveals that the symptoms of a schizophrenic disorder as well as different family roles contribute to the subjective burden of parents and spouses. Supportive assistance for schizophrenic patients' caregivers should address their particular needs more adequately.     

Predictors of positive and negative appraisal among Cuban American caregivers of Alzheimer's disease patients

OBJECTIVE: This study investigated predictors of positive (satisfaction) and negative (burden) appraisal among Cuban American (CA) caregivers of Alzheimer's disease (AD) patients. DESIGN: Cross-sectional study of AD patients and their family caregivers. SETTING: A university-affiliated outpatient memory disorders clinic. SUBJECTS: A convenience sample of 40 CA family caregivers of patients diagnosed with probable or possible AD according to NINCDS-ADRDA diagnostic criteria. MEASURES: AD patients: Mini-Mental State Examination (MMSE), Blessed Dementia Scale (BDS) and the Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD). Caregivers: Caregiving Burden Scale (CBS), Caregiving Satisfaction Scale (CSS), Perceived Emotional Support scale (PES) and the Short Form-36 Health Survey-General Health Index (GH). RESULTS: Appraised burden was predicted by increased patient behavioral pathology, female caregiver gender and lower levels of perceived emotional support. The association between older caregiver age and increased burden approached significance. Older caregiver age and higher levels of perceived social support were shown to predict appraised satisfaction. Post-hoc analyses also indicated that length of residence in the United States, a measure of acculturation, was not associated with positive or negative appraisal. CONCLUSION: Appraised burden and satisfaction represent important outcomes of dementia care that show relations with distinct factors among CA caregivers. It is clear that further research is warranted in order to ascertain the relationship of ethnicity or culture to the process and psychological consequences of dementia caregiving. Continued investigations into predictors of caregiving satisfaction are also recommended.     

Applying Sullivan's Theory of Anxiety versus Fear

Abstract

Based on the analysis of 42 in-depth interviews, this article highlights different aspects of the subjective burden experienced by parents and spouses of patients suffering from schizophrenia. The onset of a schizophrenic disorder and acute episodes during the later course of the disease lead to considerable emotional distress for the patients' caregivers. In everyday life with the patient, parents and spouses experience a comparatively less dramatic chronic burden, which nevertheless can severely affect their living situation and well-being. Caregivers often feel disappointed and dissatisfied with the information and cooperation offered by psychiatric institutions. Parents and spouses perceive the caregiver burden differently, although there are some apparent similarities. The study reveals that the symptoms of a schizophrenic disorder as well as different family roles contribute to the subjective burden of parents and spouses. Supportive assistance for schizophrenic patients' caregivers should address their particular needs more adequately.     

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.     

Emotional distress and quality of life in caregivers of patients awaiting lung transplant

OBJECTIVE: The aims of this study are to characterize the levels of emotional distress and quality of life among caregivers of lung transplant candidates and to examine the relation of coping styles and perceived caregiver burden to caregivers' self-reported emotional distress. METHODS: A consecutive series of primary caregivers of potential lung transplant candidates completed a battery of psychosocial measures, including the Beck Depression Inventory-II (BDI-II), State-Trait Anxiety Inventory, Medical Coping Modes Questionnaire (MCMQ), Scale for Caregiver Burden (SCB), and Medical Outcomes Survey, Short Form-36 (SF-36). RESULTS: Only 12 of the 82 caregivers (14.6%) who volunteered for the study reported clinically significant levels of depression (BDI-II > or =14), and only 2 caregivers (2.4%) reported clinically significant levels of anxiety (STAI > or =60). Passive coping strategies were associated with higher levels of emotional distress; specifically, resignation was associated with increased depression (r=.27, P<.04), while avoidance was associated with increased anxiety (r=.29, P<.04). In addition, caregivers who reported greater perceived caregiver burden experienced higher levels of depression (r=.45, P<.001) and anxiety (r=.43, P<.01). Moreover, the social functioning of caregivers of lung transplant patients was more than one standard deviation from a normative sample of the population (Cohen's d=1.16), indicating that caregivers of transplant patients experienced greater impairment in this area. DISCUSSION: Although most caregivers of transplant patients do not report significant impairment in functioning, assessing caregivers' coping strategies and caregiving burden may identify those caregivers who experience increased emotional distress.     

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders

In studies on caregiving, high levels of perceived burden are commonly considered as synonymous with poor well-being. This study aimed at better disentangling the relationship between burden and well-being dimensions through their joint investigation. To this purpose, perceived well-being and social resources were evaluated among caregivers reporting different levels of burden. Participants were 91 caregivers (mean age = 50.4; SD = 9.6), parents of people diagnosed with severe neuromotor and cognitive disorders. Participants completed a semi-structured interview and a set of scaled questionnaires: Caregiver Burden Inventory (CBI), Satisfaction with Life Scale, Positive and Negative Affect Schedule, Depression Anxiety Stress Scale, Eudaimonic and Hedonic Happiness Investigation, Resilience Scale for Adults, and Multidimensional Scale of Perceived Social Support. Participants were divided into two groups according to their perceived burden level, assessed through CBI. In both groups, the subjective components of burden accounted for the major fraction of the total burden level. Participants perceiving high burden reported higher levels of depression related emotions, lower life satisfaction and lower resilience than participants perceiving low burden. No group difference emerged in perceived meaningfulness and social support. A regression analysis showed that the best predictor of perceived burden was life satisfaction, followed to a lesser extent by resilience, while depression related emotions did not provide significant contribution. Findings suggest that the joint assessment of burden and well-being dimensions, that are co-existing in caregivers’ experience, allow for the identification of personal and relational resources that can be usefully included in interventions addressed to caregivers.     

The role of mind theory in patients affected by neurodegenerative disorders and impact on caregiver burden

BackgroundTheory of Mind (ToM) is defined as the ability to understand mental and emotional state. This ability is assessed also in neurodegenerative disease. Few studies have investigated the impact that social cognition of patients could have on caregiver burden. The aim of this study was to investigate a possible correlation in level of social cognition impairment between patients with different neurodegenerative disorders and their caregivers with possible impact on caregivers burden.Methodswe enrolled 48 patients with dementia divided in different groups: Fronto-Temporal Dementia (FTD), Alzheimer Disease (AD), and Mild Cognitive Impairment (MCI) and also the three groups of their respective caregivers. All subjects were submitted to ToM tests, and the caregiver groups also to Caregiver Burden Inventory (CBI) to evaluate level of burden.ResultsOur results showed that ToM was more impaired in FTD patients and in their caregivers In addition, FTD group showed more impaired performances in tasks related to emotional skills.ConclusionsWe suggested that ToM impairment of patients are related to ToM impairment of caregivers with differences of scores in caregiver groups. The caregiver difficulties to understand, attribute and describe emotional and mental states of their relatives develop distress and inability in burden management and disorders relative to neurodegenerative disease.     

Premorbid relationship satisfaction and caregiver burden in dementia caregivers

Dementia caregiver appraisal of the quality of their current and premorbid relationship with the care recipient is associated with caregiving behaviors, caregiver mood, and the decision to end home care. This study examined the contribution of premorbid relationship satisfaction to caregiver burden in dementia caregivers. Live-in dementia caregivers (n = 72) completed several psychosocial measures. Caregiver responses were used to divide them into low premorbid relationship satisfaction group (low) versus high premorbid relationship satisfaction group (high). Results indicate that premorbid relationship satisfaction is negatively associated with caregiver burden and quality of family functioning. Caregivers with high satisfaction demonstrated significantly less burden and less reactivity to memory and behavior problems, and better problem solving skills and more effective communication compared with the low caregivers. Findings are independent of length of caregiving, disease severity, care recipient daily functioning, and relationship type. Relationship satisfaction may be an important contributor to caregiver burden.     

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.     

Impact of donepezil on caregiving burden for patients with Alzheimer's disease

Comprehensive Alzheimer's disease (AD) treatment should address caregiver well-being. We predicted that caregiver burden would be lower among caregivers of AD patients who received donepezil relative to caregivers of patients not treated with donepezil. A self-administered, nationwide survey of AD caregivers was used to match caregivers of patients treated with donepezil (n = 274) to caregivers of patients not treated with donepezil (n = 274). The Caregiver Burden Scale measured time demands and distress linked to commonly performed caregiving tasks. Respondents were three-quarters female, with an average age of 60 years. Results demonstrated that donepezil caregivers reported significantly lower scores on difficulty of caregiving. This difference remained when statistical controls for multiple patient and caregiver variables were imposed. However, selection factors must be recognized as a possible explanation for differences. The groups reported no difference on the time-demand subscale. In conclusion, better management of AD symptoms through donepezil treatment may reduce the burden of caregiving, providing physicians with a pharmacologic approach to improving quality of life for AD patients and their families.     

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.     

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     

Mothers of Children with Developmental Disorders in the Bedouin Community in Israel: Family Functioning,Caregiver Burden,and Coping Abilities

This preliminary study compares the family functioning, caregiver burden, and coping abilities between mothers of 300 children with developmental disorders and mothers of 100 children with no such disorders in the Bedouin community in Israel. The mothers completed the McMaster Family Assessment Device Scale, the Caregiver Burden Index, and the Sense of Coherence Scale. Mothers of children with developmental disorders reported lower family functioning, a higher caregiver burden, and a lower sense of coherence and thus lower coping abilities than mothers of children with no disorders. The study highlights the need to provide professional support for mothers of children with developmental disorders and to develop awareness and culturally appropriate intervention programs to enhance these mothers’ coping abilities.