Subjective appraisal of Alzheimer's disease caregiving: the role of self-efficacy and depressive symptoms in the experience of burden

Most studies investigating correlates of Alzheimer's disease (AD) caregiver burden have focused on the role of objective factors as opposed to subjective factors. Although objective variables (e.g., caregiver age, patient dementia severity, functional status) have been shown to be significantly associated with burden, the correlations generally are modest and explain relatively little of the variability in caregiver outcomes. Moreover, many of these objective variables are not modifiable and are of limited use in the development of caregiver interventions. Thus, there continues to be a need to identify powerful and modifiable determinants of caregiver burden. This study examined the role of two subjective factors-self-efficacy and depressive symptoms-as predictors of AD caregiver burden. Based on a sample of 80 AD caregivers, hierarchical regression analyses revealed that self-efficacy and depressive symptoms each had a significant independent effect on the experience of burden even after accounting for objective factors. These findings suggest that caregiver interventions aimed to reduce burden may benefit from the incorporation of specific strategies to increase self-efficacy and decrease depressive symptoms.     

Burnout among relatives of psychiatric patients attending psychoeducational support groups

OBJECTIVE: The effectiveness of family interventions may be improved by concentrating on elements of objective burden that best predict subjective burden. The relationship between subjective burden and objective burden was investigated among caregivers of patients with serious mental illness in the Netherlands who were attending psychoeducational support groups. METHODS: The study used pretest data from an intervention study in which psychoeducational family support groups in the Netherlands were evaluated. A total of 164 participants from 19 psychoeducational groups organized by nine community mental health centers completed the Dutch translation of the Maslach Burnout Inventory and the Involvement Evaluation Questionnaire. Regression analyses were conducted, with elements of subjective burden as dependent variables and elements of objective burden, demographic characteristics, and characteristics of the patient's disorder as predictors. RESULTS: Burden in general and emotional exhaustion were the aspects of subjective burden best predicted by objective burden. In two regression models, objective burden together with the other predictors explained 57 percent and 54 percent of the variance in subjective burden. Two aspects of objective burden-strain on the relationship with the patient and ability to cope with the patient's behavior-were related to almost all the investigated aspects of subjective burden. CONCLUSIONS: Strong evidence was found for the relationship between objective and subjective burden and for the hypothesis that particular elements of objective burden contribute more to subjective burden than others. The findings suggest that psychoeducation should concentrate on helping relatives cope with the strain on the relationship with the patient and on improving their ability to cope with the patient's behavior.     

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.     

Quality of life in severe mental illness

Studies of quality of life (QOL) in severe mental illness have investigated objective life circumstances, the individual's subjective appraisal of their life, health status and a variety of health-economic approaches. A selective review of the literature published in English is provided. Multiple meanings and multiple measures have been employed in the QOL literature. Numerous correlates and predictors of QOL have been identified, of which by far the most consistently powerful is mood state. Subjective QOL appears to be less amenable to change than measures of health status. The authors conclude that more attention should be paid to the assessment of the impact of service interventions on service users' objective life circumstances and to obtaining narrative accounts of the issues that affect users' experience of quality of life.     

Dynamic process of family burden in dementia caregiving: a new field for psychotherapeutic interventions

Families caring for a patient with dementia are prone to significant physical, psychological and social stress. It is now well established that the caregiver burden does not only negatively affect the caregiver's physical and mental health, but is also associated with an increase in behavioural and psychiatric symptoms of dementia. Burden determinants include the quality of the relationship between the patient and caregiver; patient variables, such as the need to manage the behavioural and psychological symptoms of dementia; and also caregiver variables, such as the satisfaction of caring, demographic characteristics and societal roles. The standardised assessment of interventions for caregivers in dementia care remains a difficult task. In recent years, family interventions that focus on the process of burden itself in relation to the caregiver's subjective experience of personal growth and enrichment have been proposed. This new approach is based on the identification of tasks and challenges faced by family members throughout the different stages of the disease. In this context, brief crisis interventions transform periods of disorganisation experienced by the family into opportunities for change, whereas rehabilitation interventions developed by professional caring networks offer a continuous assessment and advice to the family. This article provides a critical review of the consequences and determinants of caregiver burden in dementia care with special reference to the emerging notion of the caregiver's subjective experience in the context of family processes.     

Correlation between subjective and objective measures of outcome in staffed community housing

Background A distinction is made between objective and subjective assessment when quality of life evaluation is considered. The aim was to explore the association between objective and subjective appraisals within similar quality of life domains. Methods Correlations between scores on objective and subjective quality of life measures concerning choice, activity and integration were investigated by administering measures to the residents of a random sample of 47 small community housing services. Correlations between the measures and resident adaptive behaviour were also investigated. Results All objective measures were significantly correlated with adaptive behaviour but only one subjective measure was. With level of adaptive behaviour controlled, 6/7 correlations between pairs of objective measures were significant. Fifteen of the 16 correlations between objective and subjective measures were insignificant. Conclusions Assessments of objective life conditions and personal satisfaction appear to be distinct. Their suitability for different purposes and the notion that subjective appraisal of life may be under homeostatic regulation are discussed.     

Self-evaluation and objective assessment of cognition in major depression and attention deficit disorder: Implications for clinical practice

IntroductionOne of the major challenges associated with the assessment of cognitive functioning in psychiatric populations is the choice of an evaluation tool. Access to cognitive assessment is often limited by issues of expense and by the lengthiness of the testing procedure. As a result, an interest emerged in the development of self-administered questionnaires to assess an individual's perception of their own cognitive functioning. These questionnaires could be more easily used for screening as part of a routine psychiatric consultation. However, few studies have compared the results of the novel subjective measures with established objective tests of cognitive skills, and most have focused on psychopathologies marked by major and apparent cognitive impairments.ObjectiveThe main goal of this study was to investigate the relationship between objective and subjective cognition in patients with major depression (MDD) and attention-deficit/hyperactivity disorder (ADHD) both associated with subtle cognitive impairments on neuropsychological testing.MethodsFirst, we compared the performance of patients with MDD and ADHD to that of healthy controls (HC) on objective and subjective measures of cognition. Then, we evaluated the association between objective and subjective measures of cognitive functioning in the three groups of participants.ResultsPatients with MDD and ADHD performed worse than HC on neuropsychological tests and reported more cognitive difficulties in their daily life. Only a moderate correlation was observed between objective and subjective measures of cognition in individuals with MDD and ADHD. Subjective cognitive measures were more closely correlated with functioning than objective measures.ConclusionThese findings suggest that neuropsychological testing and self-reported scales of cognition are not interchangeable but rather give information about different constructs. The evaluation of cognitive functioning should ideally include both objective and subjective measures of cognition.     

Supporting family dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burden

ABSTRACT

Objectives: Current research suggests that dementia care management (DCM) can decrease burden and associated health impairments of caregivers. The objective of this secondary analysis is to investigate the impact of DCM on multifaceted caregivers’ burden dimensions by differentiating between objective and subjective burden.

Methods: A sample of n = 317 dyads of caregivers and community-dwelling people with dementia (PwD) participated in a general practitioner-based, cluster-randomized intervention trial (Identifier:NCT01401582) with two arms and comprehensive data assessment at baseline and 12-month follow-up. Data provided by the caregiver included an inventory with 88 items in 20 different dimensions.

Results: Caregivers in the intervention ‘DCM’ group showed decreased caregiver burden, especially in caregivers’ objective burden due to caring (i.e. emotional support), caregivers’ subjective burden due to behavior change (i.e. cognition, aggression and resistance, depression, late symptoms) and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care (i.e. financial losses) compared to caregivers in the control ‘care as usual’ group, which showed significant increased caregiver burden after 12 months.

Conclusion: Our findings support evidence for the effectiveness of DCM to lower family dementia caregivers' burden in multifaceted dimensions.     

A real-time emotionality assessment (RTEA) system based on psycho-physiological evaluation

Human emotion is assessed by measuring and analyzing various physiological signals in an objective way, or by analyzing adjectives chosen by the subjects in a subjective way. The purpose of this study is to develop an integrated human emotion assessment system, which measures changes in a person's objective and subjective emotionality in real-time and analyzes them in an integrative way. The present system is composed of a real-time subjective emotionality assessment (RTSEA) system and a real-time objective emotionality assessment (RTOEA) system based on physiological signal measurement and analysis. It can be utilized individually, or can be combined as a synthetic emotionality assessment system for comprehensive emotionality assessment.     

Caregiver assessment of patients' depression in Alzheimer disease: longitudinal analysis in a drug treatment study.

OBJECTIVE: Caregiver input is important in the assessment of depression in Alzheimer disease (AD), but depression and subjective burden can bias this input. METHODS: In a 12-week, controlled, clinical trial of sertraline in depressed AD patients, authors correlated caregiver mood and subjective burden on several patient mood measures, incorporating varied degrees of caregiver input. RESULTS: Caregiver variables accounted for up to 33% of the variance in patient mood ratings. Caregiver depression and burden decreased regardless of treatment assignment. CONCLUSION: Caregiver depression and burden affect their rating of AD patients' mood, but the majority of variance is due to patient characteristics.     

A Real-Time Emotionality Assessment (RTEA) System Based on Psycho-Physiological Evaluation

Human emotion is assessed by measuring and analyzing various physiological signals in an objective way, or by analyzing adjectives chosen by the subjects in a subjective way. The purpose of this study is to develop an integrated human emotion assessment system, which measures changes in a person's objective and subjective emotionality in real-time and analyzes them in an integrative way. The present system is composed of a real-time subjective emotionality assessment (RTSEA) system and a real-time objective emotionality assessment (RTOEA) system based on physiological signal measurement and analysis. It can be utilized individually, or can be combined as a synthetic emotionality assessment system for comprehensive emotionality assessment.     

Caregiver burden, family treatment approaches and service use in families of patients with schizophrenia

Over the last several decades the construct of family burden has been used to capture family members' experience of caring for a mentally ill relative. The definitions and operationalization of this experience into subjective and objective components neglects the complexity and the multidimensional nature of the caregiving experience. In addition to problems operationalizing the caregiving experience, family interventions have also neglected to address the range of issues and concerns that impact those caring for mentally ill relatives. These two factors may be significant contributors to the under utilization of family-based services by relatives of individuals with schizophrenia. Two examples of treatment programs that target the multidimensional nature of the caregiving experience (NAMI's Family-to-Family and Journey of Hope), possible integration of these programs with family psychoeducation interventions and implications for service utilization are discussed.     

A measure of subjective burden for dementia care: the Caregiving Difficulty Scale – Intellectual Disability

Background It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more restrictive settings for persons with intellectual disabilities (ID) and AD. This study focused upon the development of a measure of subjective burden, The Caregiving Difficulty Scale – Intellectual Disability (CDS-ID) as a first step in addressing this measurement deficit. Methods An existing caregiver subjective burden scale, the Caregiving Hassles Scale (CHS) was adapted for use with 203 staff caregivers of persons with ID and AD. Preliminary testing of existing CHS items and proposed new items was carried out in two countries, Ireland and the USA. Confirmatory factor analysis with the existing items and exploratory factor analysis with existing and proposed new items for the scale was used to establish the content and test the psychometric properties of a revised scale, the CDS-ID Results On the existing CHS items, staff carers appeared to experience greater subjective burden than has been reported for family caregivers. However, the psychometric properties of the CHS found with this population were poor. Factor analysis produced a revised scale, the CDS-ID with three subscales with Cronbach alphas ranging from 0.75 to 0.93 and 38 items overall. Conclusions This new scale when used with objective burden and other scales offers an opportunity to more systematically measure the difficulties staff experience when caring for persons with ID who present with symptoms of AD.     

Primary stressors and depressive symptoms in caregivers of dementia patients

Pearlin et al . (1990) propose a model for examining the wellbeing of caregivers of dementia patients. The present paper focuses on one part of this model, examining the relationship between primary stressors and mental health, particularly depression, in a cross-sectional sample of 91 caregivers of dementia patients. The primary stressors examined are: patient cognitive status, objective burden, subjective burden and generalized perceived stress. Linear and non-linear relationships between patient cognitive status and caregiver depression were considered. Some evidence was found for a non-linear relationship between patient cognitive status and caregiver depression, but only the interaction between subjective caregiving burden and generalized perceived stress was found to significantly predict caregiver depression when all variables were considered. Implications for including global as well as caregiver-specific measures of subjective burden in models of caregiver wellbeing are discussed.     

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.     

Systematic comparison of subjective and objective measures of quality of life at 4-year follow-up subsequent to a first episode of psychosis

There is enduring debate about the validity of subjective measures of quality of life derived from people with psychiatric disorders and particularly from those with psychosis. We evaluated patients with established psychosis 4 years after their first episode. We compared subjective and objective measures of quality of life and evaluated the influence of insight on the individual's interpretation of their quality of life. Subjective measures of quality of life were derived using the World Health Organization Quality of Life Scale-Brief Version, and objective measures of quality of life were derived using the Quality of Life Scale by Heinrichs et al. We measured Insight using the Insight Scale. There were robust correlations between subjective and objective assessments of quality of life. This was most marked for psychological symptoms. Self-report measures are valid and should form part of the overall assessment of quality of life among patients with psychotic disorders.     

Pattern and determinants of burden in Chinese families of adults with obsessive-compulsive disorder

The burden on caregivers of patients with obsessive-compulsive disorder (OCD) is an important yet under-researched area in the Chinese population. This study aimed to assess the pattern and determinants of burden reported by caregivers of adults with OCD in Hong Kong. Seventy-seven OCD patient-caregiver dyads were recruited from a psychiatric out-patient clinic. Adults were assessed with the Yale-Brown Obsessive Compulsive Scale (Y-BOCS) and the Global Assessment of Functioning (GAF) scale. Caregivers were interviewed with the Chinese version of the Family Burden Interview Schedule. Ninety-nine percent of the caregivers experienced objective burden. Mothers of patients with OCD experienced the greatest caregiver subjective burden. Multivariate analysis showed that GAF explained 41.5% and 49.8% of the variance of objective and subjective burden respectively. The functional level of OCD adults was an important determinant of both the objective and subjective burden on caregivers.     

Determinants of quality of life in people with severe mental illness

OBJECTIVE: The objective of this article was to review some methodological issues in this field and give an overview of empirical research findings with a special focus on factors associated with or affecting subjective quality of life in people with a severe mental illness. METHOD: A selective review of relevant scientific literature on quality of life in severe mental illness was conducted. RESULTS: Subjective quality of life in people with a severe mental illness is only to a lesser extent related to external life conditions. Major determinants are psychopathology, especially symptoms of depression and anxiety, and aspects of the social network. Personality related factors such as self-esteem are also influential. Comparative studies have further shown that patients in community care settings have a better subjective quality of life than patients in hospital settings. CONCLUSION: Efforts to improve subjective quality of life in people with severe mental illness should include a careful monitoring of depressive and anxiety symptoms, and pay particular attention to assessment of and interventions against unmet needs. Further, such interventions should stress a strengthening of the social support of the clients. It is also important to pay attention to mediators of changes in subjective quality of life such as self-esteem, mastery, autonomy, and self-efficacy.     

The association between expressed emotion, illness severity and subjective burden of care in relatives of patients with schizophrenia. Findings from an Italian population

ABSTRACT: BACKGROUND: An appropriate understanding of the association between high-Expressed Emotion (EE) in family members of people with schizophrenia, patients' and relatives' correlates is needed to improve adaptation of psychoeducational interventions in diverse cultures. The aim of this study was to test the hypothesis that relatives designated as high EE would report higher subjective burden of care, and would be associated with objective variables that indicate greater illness severity i.e. number of previous hospitalizations and duration of illness. METHODS: We performed secondary analyses of baseline data from a randomized controlled trial conducted in Italy. RESULTS: High-EE relatives reported more subjective burden of care in disturbed behaviours and adverse effects areas, but did not perceive more deficits in social role performances. As regards illness severity characteristics, neither the number of previous hospital admissions nor the duration of illness was associated with high-EE. However, patients' previous psychosocial functioning, as measured by educational attainments, seems to protect the relative from high-EE status. CONCLUSION: There is a need for cross-cultural comparisons of the subjective experience of distress and burden among high EE carers as a target for intervention, aimed at reducing family stress as much as improving patient outcomes.     

Predicting caregiver burden in first admission psychiatric patients

Objective  The aim of the study was to identify the best predictors of the course of burden during a 2-year follow-up period. The study is part of the Munich 5-year follow-up study in relatives of first admitted patients with schizophrenia or depression. Method  A cohort of 60 key relatives was assessed based on a transactional stress model concerning objective and subjective burden, well-being, self-rated symptoms and global satisfaction with life. The stressors were defined as patients’ illness variables, and the potential predictors included different dispositions and resources of the relatives. Effects were analyzed by regression models. In a first step, the main predictors of burden were identified at each assessment. In a second step, the resulting predictors were included in a Generalized Linear Modeling procedure. Results  Caregivers’ burden improved significantly, but well-being and self-rated symptoms remained elevated. In the final regression model, expressed emotion, neuroticism, generalized negative stress response and life stressors resulted as the best predictors of burden. The effects were rather time invariant than time dependent. Conclusion  In order to effectively work on long-standing unfavourable patterns of stress response, family interventions should be long-term and targeted to vulnerable caregivers who could be identified by virtue of their personality traits.