Effects of caregivers' perceived stigma and causal beliefs on patients' adherence to antidepressant treatment

OBJECTIVE: Nonadherence to prescribed medications is a significant problem in the treatment of mood disorders. Previously proposed adherence models have not been sufficiently accurate in identifying patients who do not adhere to treatment. This study evaluated the importance of the social context in adherence by using a prospective, longitudinal analysis. Specifically, this study evaluated the effects of caregivers' causal beliefs about depression and their perceptions of stigma on three-month treatment adherence among patients with depression. METHODS: Fifty patients with major depressive disorder and their primary caregivers were identified at a psychiatric hospital's outpatient clinic. Attributions for the causes of depression (either cognitive and attitudinal or medical and biological) and perceived stigma were assessed among caregivers at baseline, and patients' adherence was evaluated three-months after treatment began. RESULTS: Data were available for 47 patients at follow-up. Caregivers' attribution of depression to cognitive and attitudinal problems significantly predicted patients' decreased adherence. However, the degree of patients' adherence was not predicted by caregivers' attributions to medical and biological causes and caregivers' perceived stigma. CONCLUSIONS: The findings stress the importance of patients' social environment in determining treatment adherence and the necessity of educating caregivers about the impact that their causal attributions have on patients' behavior. Involving caregivers in treatment may improve their attitude toward patients with depression and, in doing so, enhance patients' adherence and outcome.     

Predictors of recovery from major depression among geriatric psychiatry inpatients: the importance of caregivers' beliefs

Caregiver support is an important factor in recovery from depression among older patients. We examined whether caregivers' perceptions regarding patients' ability to control depressive symptoms were related to depression recovery. Depression treatment, demographics, number of depressive symptoms, and health were controlled. The sample comprised 51 geriatric psychiatry inpatients who met DSM-IV criteria for major depression and who had a primary caregiver. Depression was assessed at both admission and discharge. Caregivers were asked to indicate whether they believed their patient-relatives could control their depressive symptoms. At discharge, 33 patients (64.7%) were "remitted" and 18 (35.3%) were "nonremitted." Multivariate analyses indicated that receiving electroconvulsive treatment, having fewer depressive symptoms caregivers perceived to be within patient control, and being female predicted depression remission at discharge. This study highlights the important relationship between family dynamics and course of depression.     

Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study.

OBJECTIVE: There are high rates of stress, distress, and psychological illness in family caregivers of people with dementia. Female caregivers and those caring for people with neuropsychiatric symptoms are particularly at risk. The authors report on the prevalence of anxiety and depression in a sample of family caregivers of people with Alzheimer disease (AD) and compare the characteristics of those who did or did not have those conditions. METHODS: A group of 153 people with AD and their caregivers were interviewed as part of a larger study of AD. RESULTS: In all, 23.5% of caregivers scored at or above caseness level for anxiety, and 10.5%, at levels for depression. Care-recipient (CR) activities of daily living (ADL) impairment, being a caregiver living with the CR, being a female caregiver, reporting a poorer quality of relationship with the CR, and caregivers reporting their health as being poor all predicted anxiety disorder. CR irritability, caregivers reporting poor health, and a poorer quality of relationship with the CR predicted depression. CONCLUSIONS: Clinicians should be aware of the high rates of anxiety as well as depressive symptoms in family caregivers of people with AD, especially in female caregivers. CRs and Caregivers' impaired physical health put them at risk for psychological morbidity and should be treated energetically. A poor-quality relationship between the caregiver and the CR predicts both caregiver depression and anxiety. Caregivers living with the CR are much more likely to be anxious than depressed.     

Longitudinal study on the relationship between symptomatology of dementia and levels of subjective burden and depression among family caregivers in memory clinic patients

The objective was to evaluate the course and severity of dementia-related symptoms and their relationship to caregivers' subjective burden and depression over time. Forty-five patients with dementia and their caregivers were followed over a period of 2 years. Patients' cognition, function, and behavioral/psychological symptoms were assessed by the Mini Mental State Examination, Syndrome Kurz Test, Geriatric Depression Screening scale, Instrumental Activities of Daily Living Scale, Physical Self Maintenance Scale, Behavioral Abnormalities in Alzheimer's Disease Rating Scale, and Nurses Observation Scale for Geriatric Patients. Caregivers' depression and subjective burden were evaluated by the Geriatric Depression Screening scale or Beck Depression Inventory and the Caregiver Burden Interview. Global dementia severity, functional impairment, and behavioral disturbances increased significantly over the 2-year observation period. Caregivers' burden remained stable, and severe depression decreased over time. There were significant associations between burden and dementia-related symptoms. For deficits in activities of daily living as well as behavioral disturbances, these associations became stronger over time. It was concluded that stage of dementia, functional deficits, and behavioral disturbances are important factors when evaluating the relationship between patients' symptoms and caregivers' well-being.     

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

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

What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life?

OBJECTIVE: The authors assessed the magnitude of discrepancy between patients' and caregivers' ratings of the patients' quality of life and sought to determine whether the discrepancies are associated with patient characteristics, caregiver characteristics, or the type of relationship between the patient and caregiver. METHODS: A sample of 91 patients with mild-to-moderately severe dementia and their primary family caregiver rated five domains of the patients' subjective quality of life. RESULTS: Agreement between patients and caregivers was low. Caregivers rated patients' quality of life lower than patients rated their own in all five domains. Discrepancies between patients' and caregivers' ratings were not associated with the patients' cognitive performance, level of functioning, nor caregivers' reports of aggressive, attention-seeking, or sexually inappropriate behaviors, nor whether the caregiver lived with or was married to the patient. However, discrepancies were associated with level of caregiver burden and the patients' report of depressive symptoms. Patients with depression reported low quality of life, which matched caregivers' low rating of patients' quality of life. Caregivers who reported higher levels of burden rated patients' quality of life lower than did patients in all five domains of quality of life. CONCLUSIONS: Discrepancies between dementia patients' and their caregivers' ratings of the patients' quality of life are associated with increased levels of caregiver burden, rather than lower levels of patients' functioning. The results of this study support the direct assessment of mild-to-moderate dementia patients about their subjective quality of life.     

Different dimensions of social support for the caregivers of patients with schizophrenia: main effect and stress-buffering models

The aims of this study were: (i) to assess the impact of caring for patients with schizophrenia on the mental health status of the caregivers; and (ii) to examine the direct and buffer effects of social support on the mental health status of these caregivers. A total of 61 key caregivers of patients with schizophrenia were administered the Chinese Health Questionnaire (CHQ) and the Measure of Support Function (MSF) self-report questionnaire to assess their mental health and social support status. The MSF questionnaire constitutes four subscales, including: (i) the perceived crisis support (PCS); (ii) the perceived routine support (PRS); (iii) the received crisis support (RCS); and (iv) the received routine support (RRS) subscale. The Positive and Negative Syndrome Scale (PANSS) was used to assess the psychopathology severity of the patients they cared for. Then the authors used the hierarchical multiple regression model to analyze the relationship between these variables. The psychopathology severity of the patients reflected by the PANSS scores correlated inversely with the caregivers' CHQ scores. Besides, the PCS subscale scores correlated positively with the caregivers' CHQ scores. Moreover, the interaction between the RCS subscale scores and the PANSS scores was significant. Significant positive correlation between the RCS and CHQ exists only in the higher PANSS subgroup, but not in the lower PANSS subgroup. The psychopathological severity of the patients has a negative impact on their caregivers' mental health. PCS has a direct effect, and RCS has a buffer effect on the mental health status of these caregivers.     

Health-related quality of life for caregivers of patients with Alzheimer disease

We investigated the relationship of caregivers' health-related quality of life (HRQOL) to the burden of caring for patients with Alzheimer disease (AD) and resource utilization. Caregiver HRQOL was assessed using the SF-12 Mental and Physical Summary scores. Compared with a normative, age-adjusted sample, the 2477 caregivers had lower mental and physical scores (for the latter, only those <54 years of age). Increased caregiver mental functioning was associated with caregiver support and perceived quality of patient medical care, fewer hours of caregiving, and fewer patient behavioral symptoms. The burden of caregiving has substantial effects on HRQOL. Interventions that improve AD status and reduce caregiving hours have the potential to improve caregivers' HRQOL.     

Predictors of Depressive Symptomatology Among Lower Social Class Caregivers of Persons with Chronic Mental Illness

This study examined the predictors of depressive symptomatology among caregivers of persons with chronic mental illness. Data were collected through in-person interviews with family caregivers of 103 adults with chronic mental illness who were served by mental health case management agencies. The results indicated that insufficiency of overall social support was the most powerful predictor of caregiver depressive symptomatology. In addition, caregiver burden had a significant unique contribution to caregiver depressive symptomatology, with higher levels of burden associated with greater levels of caregiver depressive symptomatology. Higher levels of client behavioral problems and insufficient support from family members and mental health professionals related to the caregiving role were associated with higher levels of caregiver depressive symptomatology through their associations with care-giver burden. Caregiver race was not significantly related to caregiver burden or to caregiver depressive symptomatology after controlling for other variables. Over two-fifths of White caregivers and over one-quarter of Black caregivers were at risk for clinical depression. Implications for practice and research are discussed.     

The psychological well-being and associated factors of caregivers of outpatients with schizophrenia in Taiwan

The purpose of this study attempted to understand the psychological well-being of caregivers of individuals with schizophrenia and factors affecting the caregivers' psychological well-being. More specifically, quality of life and psychiatric morbidity were used to represent the psychological well-being. Personal interviews using questionnaires were administrated to 57 caregivers. Data regarding knowledge of schizophrenia, perceived causes of schizophrenia, quality of life and psychiatric morbidity was collected. Psychiatrists assessed the symptoms severity of the schizophrenic patients. Compared with the controls, the psychological well-being of caregivers of patients with schizophrenia was poorer. There was a significant association between the positive symptoms score and the psychological well-being of caregivers. Life quality and psychiatric morbidity were affected by caregivers' knowledge of schizophrenia and beliefs about the cause of schizophrenia. Health care providers should consider the patients and their caregivers as a whole and provide psychoeducaiton to reduce the negative psychological impact of caregivers.     

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.     

Depression in frail elders: impact on family caregivers

OBJECTIVES: To examine the relationship between depression among medically ill, frail elders and family caregivers' hours of care, health status, and quality of life. DESIGN AND METHODS: A cross-sectional study of 193 family caregivers of seniors treated in the emergency department (ED) was conducted. Measures included patient depression (Geriatric Depression Scale-15), and caregivers' hours of care, mental health and physical functioning (SF-36), and quality of life (EQ-5D). RESULTS: Mean caregiver age was 60.0 +/- 16.1 years and 70.5% were female. More caregivers of depressed seniors provided more care in the previous month (37.3% vs 22.4%, p = 0.03), had poor mental health (63.5% vs 47.0%, p = 0.03), and poor perceived quality of life (63.5% vs 50.4%, p = 0.04) compared to caregivers of non-depressed seniors. Multiple logistic regression analyses indicated that patient depression was associated with poor caregiver quality of life (OR = 3.15, 95% CI 1.48, 6.73), and poor mental health in spousal and adult child caregivers (OR = 2.72, 95% CI = 0.88, 8.39, and OR = 3.29, 95% CI = 1.10, 9.86, respectively). CONCLUSIONS: Psychosocial support may be needed for caregivers of depressed seniors.     

Predictors of changes in caregiving burden in people with schizophrenia: a 3-year follow-up study in a community mental health service

OBJECTIVE: The aims of this study were to measure changes over 3-years in caregiving burden and emotional distress in relatives of people with schizophrenia and to identify factors predicting the levels of caregiving burden. METHOD: A cohort of 51 caregivers of patients with schizophrenia attending the South-Verona Community Mental Health Service was assessed over 3-years with the Involvement Evaluation Questionnaire, European Version. Predictors of caregiving burden included both caregivers' and patients' characteristics and patterns of carer-patient interaction. RESULTS: Baseline levels of family burden were high in worrying and urging domains. Fifty-one per cent of caregivers experienced significant emotional distress. Both overall burden and emotional distress improved. Higher patients' psychopathology, higher numbers of patient-rated needs, patients' lower global functioning and patients' poorer quality of life were found to be related to the severity of family burden. The only significant predictor of caregivers' burden at follow-up was the baseline level of caregivers' burden itself. CONCLUSION: A policy addressing the caring burden of informal caregivers beyond patients' symptoms reduction should be considered.     

The Experience of Caregiving Inventory for first-episode psychosis caregivers: validation of the Brazilian version

Family members of first-episode psychosis (FEP) patients are regarded as key components of the patient's evaluation, recovery and treatment. This paper aimed to investigate 75 FEP caregivers' appraisal, psychological morbidity and quality of life in the initial phase of treatment in a specialized FEP outpatient program in S?o Paulo, Brazil, and evaluate the validation of the Brazilian version of the Experience of Caregiving Inventory (ECI). Caregivers were also scored through Self Report Questionnaire-20 and Short Form-36. It was found that 29% of them might be a case for minor psychiatric disorder, that the worst domains of quality of life concerned emotional aspects, vitality and bodily pain, and that they were particularly affected by patients' negative symptoms, dependency and difficult behaviors. Additionally, internal consistency of ECI was very satisfactory (Cronbach's alpha=0.95) with subscales ranging from 0.57 (stigma) to 0.94 (total negative score). The Brazilian version of the ECI is not only a facile, reliable and valid instrument to describe the experience of caring for a relative with serious mental illness. It offers mental health professionals an opportunity to access caregivers' global experience and their evaluation of a severe mental disease, as well as to predict their psychological suffering, which is harmful to both patient and caregiver.     

Prevalence and correlates of burden among caregivers of patients with bipolar disorder enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder

OBJECTIVES: Caring for a relative with schizophrenia or dementia is associated with reports of high caregiver burden, symptoms of depression, poor physical health, negligence of the caregiver's own health needs, elevated health service use, low use of social supports, and financial strain. This study presents the design and preliminary data on the costs and consequences of caring for a relative or friend with bipolar disorder from the Family Experience Study, a longitudinal study of the primary caregivers to 500 patients enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder. METHODS: Subjects were primary caregivers of 500 patients with bipolar disorder diagnosed by the Mini International Neuropsychiatric Interview and the Affective Disorder Evaluation. Caregivers were evaluated within 1 month after patients entered Systematic Treatment Enhancement Program using measures of burden, coping, health/mental health, and use of resources and costs. RESULTS: Eighty-nine percent, 52%, and 61% of caregivers, respectively, experienced moderate or higher burden in relation to patient problem behaviors, role dysfunction, or disruption of household routine. High burden caregivers reported more physical health problems, depressive symptoms, health risk behavior and health service use, and less social support than less burden caregivers. They also provided more financial support to their bipolar relative. CONCLUSIONS: Burdens experienced by family caregivers of people with bipolar disorder are associated with problems in health, mental health, and cost. Psychosocial interventions targeting the strains of caregiving for a patient with bipolar disorder are needed.     

Dementia patients caregivers quality of life: the PIXEL study

BACKGROUND: Alzheimer's disease and related syndromes have heavy social and human consequences for the patient and his family. Beyond the neuropsychiatric effects of specific therapies for dementia, one of today's challenges is the quality of life for both patients and their informal caregivers. OBJECTIVES: This survey tends to determine parameters influencing caregivers' quality of life, and its possible link with patients' quality of life. METHODS: A scale measuring caregivers' quality of life, developed from data from previous PIXEL studies was used. It is a questionnaire composed of 20 items. The scale was related to the socio-demographic data of both patients and their main caregivers, to the ADRQL scale (Alzheimer Disease Related Quality Life) of Rabins for the QoL of dementia patients, to the patients medical and therapeutic data, specially a neuropsychological inventory: Folstein's cognition test, Cornell's depression scale, the fast battery of frontal assessment, Katz's dependence index, Cummings' neuropsychiatric inventory for behavioral and psychological symptoms of dementia and to a physician evaluation of caregiver's depression. RESULTS: One hundred patients diagnosed with dementia who live at home with their principal caregivers were recruited for this survey. Patients were 80.2 +/- 6.8 years old and caregivers were 65.7 +/- 12.8 years old. The caregivers' quality of life was correlated to the quality of life of the patients they cared for, the importance of behavioral disorders, and the duration of dementia evolution. Women caregivers had a worse quality of life and were more depressive than men. DISCUSSION: Caregivers' and patients' quality of life are related and both share a community of distress.     

Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer's disease

This study assessed the impact on health-related quality of life (HRQL) and the perceived burden of informal caregivers of individuals with Alzheimer's disease (AD) on the Canary Islands (Spain). We utilized a multicenter, cross-sectional design, based on questionnaire responses of 237 informal caregivers of AD patients. Patients were classified according to the degree of severity utilizing the Clinical Dementia Rating Scale. Sociodemographic, HRQL (EQ-5D) and functional dependency data were gathered together with the degree of caregiver burden. Caregivers had a higher frequency of problems than did the general population for every EQ-5D dimension. Caregivers' HRQL was inversely associated with the subject dependency level and caregiver age. HRQL was higher for more educated caregivers. Variables with a negative and/or significant effect on caregivers' HRQL were high feelings of burden, more committed time to care, and older age. The caregiver burden quantified by the Zarit scale showed 83.3% of caregivers with a high level of burden.     

Measurement and correlates of family caregiver self-efficacy for managing dementia

Researchers in the aging field are paying increasing attention to the importance of perceived self-efficacy in understanding experiences and health-related outcomes of family caregivers. This paper details the strategy we used to measure family caregiver self-efficacy for managing dementia, and reports on observed associations between the resulting self-efficacy measures, caregiver depressive symptoms, and caregiver physical health symptoms. Family caregivers (n = 197) were interviewed after calling a local Alzheimer's Association chapter in the mid-western USA. Nine items inquiring about caregivers' certainty that they could carry out specific behaviors related to dementia care clustered into two distinct self-efficacy factors: symptom management self-efficacy (4 items) and community support service use self-efficacy (5 items). Internal consistency reliability for both factors was high (Cronbach's alpha = 0.77 and 0.78, respectively). Symptom management self-efficacy demonstrated a much stronger correlation with a published global caregiver competence measure than did service use self-efficacy (r = 0.49 and 0.27, respectively). In a multivariate regression model predicting caregiver depression symptoms, higher symptom management self-efficacy scores were associated with fewer depressive symptoms (beta = -0.17, p < 0.05). In a separate model, higher service use self-efficacy scores (beta = -0.20, p < 0.01) and higher symptom management self-efficacy scores (beta = -0.16, p < 0.05) were associated with fewer physical health symptoms. These new measures of dementia management self-efficacy hold promise for use in future studies.     

Subjective quality of life of family caregivers of community living Sudanese psychiatric patients

Background Reports on the quality of life (QOL) of family caregivers of psychiatric patients are uncommon. Objective The objective of this study was to assess the subjective QOL of caregivers of stable Sudanese outpatients using the World Health Organization 26-item Quality of Life Instrument compared with a general population sample, and assess the factors associated with caregivers' QOL. Method Responses of caregivers of outpatients with schizophrenia (99), major affective disorders (120), and neuroses (81) were compared with 211 general population subjects. Results Caregivers were satisfied with the items related to the strengths of the traditional society and dissatisfied with the items related to national economic indices. Schizophrenia caregivers had lower scores than the others (P>0.05) who scored significantly higher than general population subjects and patients. Parents had the least scores. Patients' variables were not significantly associated with caregivers' QOL. Caregivers' sociodemographic variables were significantly associated with QOL. Caregivers' QOL was predicted by their impression of patients and state of health. Schizophrenics had the least correlations with caregivers' QOL. Conclusion Caregivers who are women, parents, and sick seemed relatively vulnerable and need assistance. Their areas of dissatisfaction with material circumstances should be addressed in a social welfare program. Caregivers' inner strengths, extended family supports, and positive appreciation of the patients are resources for enhancing their caregiving role.