When primary and secondary caregivers disagree: Predictors and psychosocial consequences.

The purpose of this study was to investigate primary caregiving spouses' and their lay helpers' divergent opinions about the caregiving environment. Through parallel assessments, both primary and secondary caregivers of a patient with Alzheimer's disease were asked to rate the degree of patient problem behaviors; the degree of strain the primary caregiver was experiencing; and primary caregiver efficacy, or perceived ability to cope with caregiving demands. Analyses concentrated on the general levels of disagreement in these domains, as well as on potential predictors and consequences of such disagreement. Results revealed a substantial divergence in perceptions across caregiving domains, with relatively less disagreement about patient problem behaviors and primary caregiver strain than about primary caregiver coping efficacy. Primary caregivers with relatively pessimistic secondary caregivers experienced relatively less psychosocial distress than primary caregivers with more optimistic helpers. These findings were strongest among female–female caregiving dyads. Theoretical implications and methodological limitations of the study are discussed, along with suggestions for future research. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Perceived control, coping efficacy, and avoidance coping as mediators between spousal unsupportive behaviors and psychological distress.

This study examined whether avoidance, coping efficacy, and perceived control mediate the effects of spouses" unsupportive behaviors on patient psychological distress among 191 married individuals enrolled in cancer treatment. Results of the structural equation analyses suggested that avoidance and coping efficacy mediated the relationship between spouses" unsupportive behaviors and patient psychological distress. Perceived control of emotional aspects of the illness, including emotional responses and relationships with family and friends, and perceived control of the medical course of the cancer did not mediate the relationship between spouses" unsupportive behaviors and patient psychological distress. These findings suggest 2 mechanisms to explain why unsupportive responses from spouses may be associated with psychological distress among cancer patients. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Appraisal, coping, and social support as mediators of well-being in Black and White family caregivers of patients with Alzheimer's disease.

Family caregivers of patients with Alzheimer's disease (AD) commonly have high levels of psychological distress. Black caregivers often report less depression than White caregivers, but the process underlying this difference is poorly understood. With the use of a stress process model, 123 White and 74 Black family caregivers of patients with AD and other progressive dementias were studied. Black caregivers appraised patient problems as less stressful and reported higher self-efficacy in managing caregiving problems and less depression than did White caregivers. White and Black caregivers also differed significantly in coping responses but not in social supports. Structural equation analyses indicated that the correlational structure of the stress process was similar in White and Black caregivers. Caregiving stressors and race did not affect well-being through direct paths, but they were mediated by effects for appraisal, social support and activity, and coping. Possible cultural mechanisms explaining the better adjustment among Black caregivers are discussed. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Relationship orientation, quality of prior relationship, and distress among caregivers of Alzheimer's patients.

Communal orientation and closeness of the caregiver–patient relationship were investigated as predictors of distress among caregivers of Alzheimer's patients. Persons high in communal orientation were less depressed than those low in communal orientation. Caregivers reporting a close relationship with the patient before illness onset felt less burdened than those whose relationship had not been close. Communal orientation interacted with closeness when data were analyzed separately for men and women. Among men, being low in communal orientation and having a relatively poor prior relationship were associated with the highest levels of depression, levels that put them at risk for clinical depression. Among women low in communal orientation, higher levels of depression were related to having a close relationship with the patient. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

A quantitative study of the emotional outcome of people caring for stroke survivors

BACKGROUND AND PURPOSE: Although the physical and, to a lesser extent, emotional outcome of stroke survivors has been well documented, there are far fewer data relating to the outcomes of those who care for them. We aimed to describe the outcome of those caring for stroke patients and to identify both patient and caregiver factors that are associated with poor caregiver outcomes. METHODS: As part of a randomized trial to evaluate a stroke family care worker, we identified 417 patients (67% of all referrals to our institution). We followed up 376 survivors of whom 246 identified a caregiver at a 6-month follow-up interview. The patients and caregivers were asked to complete 2 measures of emotional distress ( 30-item General Health Questionnaire [GHQ-30] and Hospital Anxiety and Depression [HAD] Scale). A regression analysis was used to identify factors that were independently associated with poor caregiver outcomes. RESULTS: Fifty-five percent of responding caregivers scored more than 4 on the GHQ-30, indicating that emotional distress is common in this group. Caregivers were more likely to be depressed if the patients were severely dependent (P<0.01) or emotionally distressed themselves (P<0.01). Female caregivers reported more anxiety (median HAD=8) than male caregivers (median HAD=5; P<0.01) but caregivers' levels of anxiety were not so clearly related to the patients' degree of physical disability as their levels of depression. Caregivers suffered more emotional distress if the patients had been dependent before their strokes. CONCLUSIONS: These data may help to identify those caregivers at greatest risk of poor emotional outcomes and thus help in the planning of trials and delivery of interventions aimed at preventing or treating distress among caregivers.     

Children's Perceived Illness Uncertainty as a Moderator in the Parent-Child Distress Relation in Juvenile Rheumatic Diseases.

Objective: Examine children's perceived illness uncertainty as a potential moderator in the parent-distress/child-depressive-symptom relation in youths with juvenile rheumatic disease (JRD). Participants and Study Design: 50 youths between the ages of 9 and 17 and their parents completed self-report measures. Main Outcome Measures: Parents completed the Brief Symptom Inventory (L. R. Derogatis & N. Melisaratos, 1983); youths completed the Children's Depression Inventory (M. Kovacs, 1992) and the Children's Uncertainty in Illness Scale (L. L. Mullins & V. L. Hartman, 1995). Results: Children's perceived illness uncertainty moderated the parent-distress/child-depressive-symptom relation. Parent distress was associated with child depressive symptoms only under conditions of high child-perceived uncertainty; under conditions of low illness uncertainty, parent distress was unrelated to child depressive symptoms. Conclusions: Results highlight the role of children's cognitive appraisals in parent-child adjustment relations in JRD. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The independent influence of apathy and depression on cognitive functioning in Parkinson's disease.

Objective: The purpose of the present study was to examine the independent influence of symptoms of depression and apathy, two of the most common neuropsychiatric symptoms in Parkinson's disease (PD), on executive functioning and memory in PD patients using measures designed to discriminate between these symptoms. Method: Participants included 68 nondemented, idiopathic PD patients, ages 56–82 years. The Apathy Evaluation Scale—Self-Rating and select items of the Beck Depression Inventory II were used to assess symptoms of apathy and depression, respectively. Cognitive function was assessed using the Wisconsin Card Sorting Test and Hopkins Verbal Learning Test—Revised. Correlations and hierarchical regressions were conducted to investigate the relationships between apathy, depression, and cognitive function. Hierarchical regression analyses were conducted to evaluate the degree of influence of depression and apathy on cognitive function. Results: Results revealed that symptoms of apathy, but not depression, were significantly and negatively associated with executive functioning. Immediate memory was significantly and negatively associated with both apathy and depression. However, apathy accounted for additional variance in memory performance after controlling for depression at a level approaching significance. Conclusions: Apathy is not only associated with cognitive impairment, but also with impaired daily functioning, caregiver burden and distress, medication noncompliance, and increased mortality. Differentiating apathy and depression, understanding their unique effects, and appropriately identifying apathy symptoms in patients have robust implications for the development of neuropsychological models of these effects in PD as well as practical implications in guiding improvements to patient care and enhancing quality of life in patients and caregivers. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Goal adjustment capacities, coping, and subjective well-being: The sample case of caregiving for a family member with mental illness.

This study examined the associations between goal adjustment capacities, coping, and indicators of subjective well-being in 2 waves of data from individuals who provide care for a family member with mental illness. We hypothesized that goal adjustment capacities would predict higher levels of subjective well-being by facilitating coping with caregiving stress. Results showed that goal disengagement was associated with effective care-specific coping (e.g., less self-blame and substance use). Goal reengagement was also associated with effective care-specific coping (e.g., positive reframing), but at the same time it predicted the use of less effective strategies (e.g., venting and self-distraction). Moreover, goal disengagement predicted lower levels of caregiver burden and depressive symptoms and buffered the longitudinal effect of caregiver burden on increases in depressive symptoms. Goal reengagement, by contrast, predicted higher levels of caregiver burden and purpose in life and buffered the cross-sectional association between caregiver burden and depressive symptoms. Finally, effective (and less useful) care-specific coping statistically explained the adaptive (and maladaptive) effects of goal adjustment capacities on participants' well-being. (PsycINFO Database Record (c) 2011 APA, all rights reserved)     

The balance of give and take in caregiver–partner relationships: An examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke.

Purpose: We examined the sense of being a burden to others or self-perceived burden (SPB) in people with stroke. Method: A mail survey was completed by 57 former inpatients and their partner caregivers. The care recipient survey included measures of functional status, quality of life, marital satisfaction, equity in the relationship, and psychological distress, as well as SPB using the Self-Perceived Burden Scale (SPBS; Cousineau, McDowell, Hotz, & Hébert, 2003). The caregiver survey included similar measures in addition to a caregiver burden measure. Results: SPB was found to be a prevalent and distressing concern. SPBS scores correlated with measures of functional status and mood; however, the correlations were highest for measures of family roles and work/productivity. Using equity theory as a basis to examine the SPB construct, care recipients who perceived themselves as overbenefiting from the relationship had significantly higher SPB scores than those whose relationship was viewed as equitable or underbenefiting. Conclusions: For some receiving care from a partner after stroke is associated SPB. This sense of burden is related to changes in help-seeking behavior, quality of life, and distress. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers.

A stress and coping model was used to study predictors of individual differences in caregiver adaptation. A total of 54 family caregivers of elderly dementia patients completed interviews and questionnaires assessing the severity of patient impairment and caregiving stressors; caregiver appraisals, coping responses, and social support and activity; and caregiver outcomes, including depression, life satisfaction, and self-rated health. Correlational and regression analyses supported the utility of the stress and coping model. Appraisal, coping responses, and social support and activity were significant predictors of caregiver outcome, even when severity of caregiving stressors was statistically controlled. The importance of a multidimensional approach to assessing caregiver outcomes was supported by regression analyses indicating that each caregiver outcome was predicted by different patterns of stressors, appraisal, coping, and social support and activity. Results are discussed in terms of a stress and coping model of caregiving, and clinical implications for work with caregiving families. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Stress, coping, and psychological adjustment of adults with sickle cell disease.

Examined a transactional model of psychological adjustment to chronic illness with 109 African-American adults with sickle cell disease (SCD). Good psychological adjustment was associated with lower levels of perceived daily stress and stress regarding SCD illness tasks, higher efficacy expectations, less use of palliative coping methods, less use of negative thinking/passive adherence pain-coping strategies, and family functioning characterized by high levels of support and low levels of conflict and control. Overall, the underlying stress and coping conceptual model accounted for 44–50% of the variance in psychological adjustment. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Structural equation modeling of the relationship between caregiver psychosocial variables and functioning of individuals with stroke.

Purpose/Objective: Stroke is a leading cause of disability worldwide. Informal caregivers are essential in the survival of most individuals with stroke and may even aid in their recovery. Yet caregivers experience high levels of burnout, depression, burden, and physical illness. Research Method/Design: With structural equation modeling and canonical correlation analysis, links were identified between caregiver psychosocial variables and specific aspects of the functioning of individuals with stroke in 135 care recipient-caregiver dyads. Results: Initial analyses uncovered a medium-sized correlation between caregiver variables and care recipients' functioning. Follow-up analyses pinpointed specific links between caregivers' sense of coherence and care recipients' basic engagement with life and between caregivers' levels of burden and depression and care recipients' cognitive deficits and depression. Conclusions/Implications: On the basis of these findings, the authors propose a feedback loop wherein caregivers' psychosocial functioning, their quality of caregiving, and stroke severity and recovery are causally interconnected. Findings are consistent with the use of cognitive-behavioral interventions for caregivers, which may improve caregivers' sense of coherence, reducing their levels of burden and depression and leading to improved informal care and better recovery from stroke. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Predicting longitudinal changes in caregiver physical and mental health: A stress process model.

Alzheimer's family caregivers (N?=?122) reported on physical and mental health, as well as stress process variables, at baseline and at a 1-year follow-up. Hierarchical regression analyses of stress process models revealed that increases in primary stressors (e.g., patient self-care and behavioral problems) did not directly affect changes in the mental and physical health outcome variables. However, analyses of models of direct, mediated, and moderated effects revealed that psychosocial resource variables (appraisals, coping responses, and social support) were related to caregiver outcomes over time through several mechanisms. In particular, benign appraisals of stressors, the use of approach coping, and greater levels of social support were associated with more positive caregiver health outcomes over time. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Perceived overprotection and distress in adults with visual impairment.

Objective: To investigate the role of perceived overprotection, a problematic aspect of social support, as a risk factor for distress among adults with chronic vision impairment. Study Design: Cross-sectional study using telephone interviews. Setting: Vision rehabilitation agency. Participants: One hundred fourteen adults with vision impairment (ages 24-64). Measures: 18-item Overprotection Scale for Adults, 20-item Center for Epidemiological Studies-Depression Scale, 21-item Beck Anxiety Inventory. Results: Hierarchical multiple regression analyses demonstrated that higher levels of perceived overprotection were associated with higher levels of depressive symptomatology as well as higher levels of anxiety. Conclusions: Vision rehabilitation programs should address issues around perceived overprotection. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Sleep-related violence, injury, and REM sleep behavior disorder in Parkinson's disease

OBJECTIVE: To determine the occurrence of REM sleep behavior disorder (RBD) and sleep-related injury (SRI) in an outpatient PD practice. BACKGROUND: RBD is a frequent cause of SRI in older individuals. Although RBD is seen in PD, the association of SRI and RBD in PD has not been previously assessed. DESIGN/METHODS: Consecutive patients with PD and their caregivers were interviewed using a structured questionnaire assessing the presence of RBD and SRI. Patients fulfilling the International Classification of Sleep Disorders (ICSD) criteria for RBD were compared with non-RBD patients. In a separate analysis, patients with a prior SRI were compared to those without. RESULTS: Of the 61 patient/caregiver pairs, 15% (7 men and 2 women) met the clinical criteria for RBD. There were more episodes of SRI in the RBD group, with 33% causing injury to themselves or to their caregivers compared with 6% of the non-RBD group (chi(2) = 13, p = 0.005). In the second analysis, 15% (all men) patient/caregiver pairs reported SRI. Of these, 66% of the patients had behaviors resembling those seen in RBD, and 33% had recalled dream content. There is a significant association between SRI and RBD for dream-enacting sleep behaviors (Fisher's exact test, p = 0.0001). CONCLUSION: PD patients with SRI frequently have behavioral features of RBD. If RBD underlies most SRI, treatment with appropriate pharmacologic agents, such as clonazepam, may prevent future occurrences of SRI.     

Coping With Employment Uncertainty: A Comparison of Employed and Unemployed Workers.

This study examined coping with stress associated with employment uncertainty for comparable samples of laid-off and employed high-technology workers. It was expected that different coping strategies would be associated with perceived stress for employed vs. unemployed people. Although unemployed participants reported higher levels of stress compared with employed participants, employment uncertainty mediated the association between employment status and perceived stress. Emotion-focused coping strategies were related to higher perceived stress, whereas problem-focused coping strategies were related to lower perceived stress. The use of emotional avoidance as a strategy moderated the effect of employment uncertainty on perceived stress, such that a greater propensity to endorse avoidance coping strategies was associated with higher levels of stress particularly under low uncertainty conditions. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Illness intrusiveness, uncertainty, and distress in individuals with multiple sclerosis.

Objective: To examine the relation of illness intrusiveness and illness uncertainty to psychological distress in patients with multiple sclerosis (MS). Study Design: Participants were recruited from regional support groups and local neurologists. Participants completed self-report measures of illness intrusiveness, illness uncertainty, and psychological distress. Disease status was assessed by administration of a mental status exam and an index of ambulation. Participants: The sample included 78 (55 women, 23 men) individuals diagnosed with MS. Main Outcome Measure: The Symptom Checklist—90—Revised Global Severity Index. Results: Hierarchical regression analyses indicated that illness intrusiveness and illness uncertainty independently predicted adjustment problems above and beyond demographic and illness variables. No mediator or moderator relationships were found for illness intrusiveness. Conclusions: Psychological appraisals of illness are salient predictors of adjustment even after statistically controlling for the influence of age, education, and objective indices of physical and cognitive impairment. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Caregivers of Turkish schizophrenic patients: causal attributions, burdens and attitudes to help from the health professionals

The purpose of this study was to examine the causal attributions, difficulties, perceived and expected help behaviour of health care professionals, and hope for the future well-being of the caregivers of Turkish schizophrenic patients in order to form guidelines for forming a collaboration with the families of schizophrenic patients. Sixty caregivers were interviewed by using a semi-structured interview schedule. The responses of the caregivers were categorized within the guidelines of the literature in this area. The caregivers attributed schizophrenia mainly to psychosocial causes, namely stressful events (50%), family conflicts (40%) and patients' characteristics (28%). The most frequently reported difficulties were family conflicts and disruptions of family life, subjective burden (48%), and financial costs due to the patient (27%). The number of difficulties reported by caregivers was related to the duration of the patient's illness. Caregivers perceived pharmacological treatment (42%), interest and support given to the caregiver (28%), and the hospitalization of the patient (20%) as helpful. THeir expectations of help were in similar areas. About half of the caregivers were optimistic about the future well-being of their relatives. Optimistic and pessimistic caregivers differed in the educational level of the caregiver and the duration of the patient's illness. The results suggested that the families of schizophrenics need support of professionals and the establishment of networks focusing on the caregivers and their relationships with their ill relatives and with health care institutions.     

Coping with increased uncertainty in the field of work and family life.

Globalization, demographic aging, and individualization and pluralization of life courses have led to individuals' increasing uncertainty regarding their future. The effects of social change on the lives of individuals, however, may depend on coping processes. The authors analyzed whether perceived uncertainty due to social change, problem-focused coping, and distancing from demands would be related to depressive symptoms in 1,975 German adolescents and adults. A higher number of perceived demands in the areas of work and family life (e.g., perceived increase of difficulties with finding adequate jobs and of instability of one's intimate relationship) were associated with higher levels of depressive symptoms. In addition, higher levels of problem-focused coping were related to fewer depressive symptoms, whereas higher levels of distancing from demands were related to more depressive symptoms. Problem-focused coping buffered the effect of family-related demands but not of work-related demands on depressive symptoms. Finally, distancing from demands buffered the effects of family-related demands but amplified the effects of work-related demands on depression. In sum, the present study supports the main effects model and the interaction effects model of coping. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The Caregiver Activity Survey (CAS): development and validation of a new measure for caregivers of persons with Alzheimer's disease

BACKGROUND: Most instruments that measure the impairments associated with Alzheimer's disease assess symptom severity. Little attention has been paid to the illness's impact on the time formal and informal caregivers spend caring for Alzheimer's individuals. A tool that measures the time spent caregiving would help to determine the economic impact of the illness. The Caregiver Activity Survey (CAS) was developed to measure the time caregivers spend aiding Alzheimer's patients with their day-to-day activities. METHODS: The test-retest reliability of the CAS was assessed during a 3-week study with 42 Alzheimer's patients and their caregivers. The CAS was validated with the Alzheimer's Disease Assessment Scale Cognitive Subscale (ADAS-Cog), the Mini Mental State Exam (MMSE) and the Physical Self Maintenance Scale (PSMS). RESULTS: The final version of the CAS consists of six items (communicating with the person, using transportation, eating, dressing, looking after one's appearance and supervising the person). The six-item CAS total score has high test-retest reliability, with ICC = 0.88 between weeks 1 and 3. The scale has strong convergent validity with the ADAS-Cog (r = 0.61), MMSE (r = -0.57) and PSMS (r = 0.43). Efforts to include a dimension that reflects caregiver burden were not successful, in part due to the reluctance of caregivers to acknowledge that caregiving is bothersome. CONCLUSIONS: The CAS provides a new tool that measures time spent caring for Alzheimer's individuals. The instrument may be used to augment existing clinical assessments that measure the efficacy of potentially therapeutic agents for persons with Alzheimer's disease.