Psychological health of caregivers and association with functional status of stroke patients

Objective: Stroke does not only affect the physical state of patients but also the emotional state of their relatives, most effectively their caregivers. The study aims to examine the mood of caregivers experienced with care for patients with stroke who are highly dependent on the assistance and also to establish the relationship between the emotional state of caregivers and the severity of disability of the patients.

Methods: This study contained a total of 76 patients with sufficient cognitive functions and severe physical disabilities with hemiplegia caused by a cerebrovascular accident and their caregivers and 94 controls. The functional state of patients was assessed by the Barthel Index (BI). Furthermore, emotional state of the caregivers was assessed by the Hospital Anxiety and Depression Scale (HADS) and their life quality was assessed by the SF36 Health Survey.

Results: The mean anxiety (9.73 ± 4.88) and depression rates (9.81 ± 5.05) in the caregivers were significantly higher than those in controls (p<0.001, respectively). Significant impairments were observed in both their mental and physical health. Regression analysis also showed a significant negative correlation between the BI scores and the HADS scores.

Conclusion: Caregivers had an impaired emotional state and the level of their anxiety was associated with the severity of functional disability of the patients. Therefore, the support provided to the caregiver might be influential on the functional recovery of the patients.     

Distress in primary caregivers and patients listed for liver transplantation

Orthotopic liver transplantation (LTx) has become a routine procedure in the treatment of end-stage liver disease. During the waiting period for transplantation, the patient's family members are also highly affected. We examined the course of distress and quality of life (QOL) in 47 patients awaiting LTx and distress in 24 caregivers at baseline and in intervals of 4–6 weeks, using The Hospital Anxiety and Depression Scale (HADS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). All subscales of the EORTC QLQ-C30, except emotional functioning, were lower than normal at baseline. Little change in patients' QOL was observed during the waiting period. In the HADS, there were significantly higher anxiety scores in caregivers than in patients both at baseline and after 1–2 months and the third assessment, with the difference after 3–5 months reaching almost significance. Caregivers' anxiety levels increased significantly. Relatives showed more depression than patients only at month 1–2 and a significant increase in depression from baseline to month 1–2. In patients, depression scores remained relatively stable throughout all visits. Our results emphasize the importance of evaluation of psychic stress especially in relatives during the waiting period for LTx.     

Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients

PurposeTo analyze the main determinants of burden and health-related quality-of-life (HRQoL) in caregivers of Brazilian Parkinson's disease (PD) patients.MethodsCaregivers answered Hospital Anxiety and Depression Scale (HADS), Zarit caregiver burden interview (ZCBI) and EQ-5D, a generic measure of HRQoL. Patients were assessed with Hoehn and Yahr (H&Y) staging; Scales for Outcomes in Parkinson's disease (SCOPA) Motor, Cognition, Psychosocial and Sleep scales; Non-Motor Symptoms Scale; HADS; Clinical Impression of Severity Index; EQ-5D and Parkinson's Psychosis Rating Scale.Results50 Caregiver-patient dyads were assessed. Caregivers were significantly younger (55.7 vs. 65.4 years), p < 0.0001. Eighty-eight per cent of caregivers were females, and 78% were spouses. The proportion of caregivers who scored ≥11 points in the HADS-anxiety or HADS-depression subscales was 12% and 14% respectively. ZCBI mean score was 20.2 (SD 12.8), and significantly worsened as severity of disease, based on H&Y, increased (H&Y 1–2: 16.4, H&Y 3–5: 24.6; p = 0.02). Caregiver's EQ-5D Index and visual analog scale mean scores were 0.7 (SD: 0.26) and 76.3 (SD: 16.2) respectively. Weak to moderate association (r = ?0.27 to ?0.39) between EQ-5D Index and ZBCI mean scores was observed in caregivers. Patient outcomes (sleep disorders and behavioral-psychotic symptoms) and caregiver outcomes (mood, time of caregiving) were independent predictors of caregiver burden (adjusted R² = 0.55; p < 0.0001) in the multivariate regression analysis. Caregiver's mood status was a significant determinant of caregiver's HRQoL, as measured by the EQ-5D Index (adjusted R² = 0.28; p = 0.006).ConclusionsPatients' psychiatric and sleep disorders and caregiver's mood significantly influenced burden and HRQoL in Brazilian PD caregivers.     

Caregiver burden in Parkinson's disease.

Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being.     

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     

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.     

Participation and mental well-being of mothers of home-living patients with spinal muscular atrophy

Proximal spinal muscular atrophy (SMA) causes severe physical limitations but also has a major impact on the lives of parents. The aim of this study was to investigate participation and mental well-being (burden, emotional distress and satisfaction with participation) of parents of home-living patients with SMA. Caregiver burden was assessed with the Caregiver Strain Index, emotional distress with the Hospital Anxiety and Depression Scale and satisfaction with participation with the Utrecht Scale for Evaluation of Rehabilitation-Participation. Because the majority of parents were mothers of home-living SMA patients (76%), further analyses were restricted to mothers. Seventy-seven percent of mothers of patients with SMA had paid work. A substantial proportion of mothers (76%) perceived high caregiver burden. Burden, emotional distress and satisfaction with participation were comparable between mothers of children and mothers of adults with SMA. Caregivers’ participation in leisure activities was significantly related to their perceived level of caregiver burden, emotional distress and satisfaction with participation. Mothers engaging in more social and leisure activities reported lower emotional distress and caregiver burden. Considering the high level of burden attention should be paid to mental well-being of primary caregivers of patients with SMA. Caregivers should be motivated to keep participating in social/leisure activities.     

Psychological Burden in Stroke Survivors and Caregivers Dyads at the Rehabilitation Center of Kinshasa (Democratic Republic of Congo): A Cross-Sectional Study

IntroductionStroke is a major cause of burden which can lead to anxiety and depressive disorders in stroke patients and their caregivers. This study aimed to assess the burden of depression and anxiety and covariates as well as its association with functional disability level among stroke survivors and caregivers dyads.MethodsThis cross-sectional study assessed for anxiety and depressive symptoms, and perceived burden among survivors of stroke and their caregivers in the rehabilitation center of Kinshasa; using the Hospital Anxiety and Depression Scale to identify participants with anxiety and depression; the Zarit Burden Inventory to assess the burden of depression and anxiety; and the modified Rankin scale used to assess functional outcome or level of disability.ResultsEight in ten caregivers of stroke survivors perceived the burden, which took more expression of depression than anxiety, whereas three in ten stroke survivors had a burden expressed by symptoms consistent with depressive and anxiety disorders. Being married increases the risk of perceiving the burden among stroke survivors. We found a positive association between high level of burden and depression and anxiety among caretakers of stroke survivors. Moreover, our findings did not reveal a statistical association between the burden and level of dependence evaluated based on the severity of disability.ConclusionsThe psychological burden is higher among caregivers than stroke survivors. Specialized programs targeted the psychological distress, its association with anxiety and depressive symptoms; and the functional disability level of stroke survivors should be integrated into the rehabilitation center of patients with disabled illnesses. Our findings warrant further studies to test the impact of reducing psychological burden on functional disability.     

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.     

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

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

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

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

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

Emotional burden in caregivers of patients with obsessive-compulsive disorder

Background: The objective of this study was to evaluate the emotional burden, psychological morbidity, and level of family accommodation in caregivers of obsessive‐compulsive disorder (OCD) patients, according to sociodemographic and clinical factors. Methods: Fifty Brazilian DSM‐IV OCD patients and their caregivers were evaluated using the Family Accommodation Scale, the Zarit Burden Interview (ZBI), the Self‐Report Questionnaire (caregivers), the Yale‐Brown Obsessive‐Compulsive Scale, and the Beck Depression Inventory (patients). Most caregivers (80%) were aged between 30 and 59 years and lived with the patient (88%). Results: Forty‐two percent presented a common mental disorder and their mean ZBI score was 28.9. Family accommodation was moderate in 26% and severe or very severe in 24%. Caregivers' levels of psychological morbidity, accommodation, and emotional burden were associated with each other and with the severity of patient obsessive‐compulsive and depressive symptoms. Conclusions: The results suggest that caregivers of OCD patients have important levels of burden and psychological morbidity and should receive orientation and support to minimize this emotional impact. Depression and Anxiety, 2008. © 2008 Wiley‐Liss, Inc.     

Gender difference and caregivers' burden in early-onset Alzheimer's disease

Background: Caregiver burden is the stress experienced as a result of caregiving. Despite the increasing number of Alzheimer's disease (AD) patients who are cared for at home, little has been published about the caregiver burden pertaining to caregivers of early‐onset AD patients. The objective of this study was to examine the difference between the genders with respect to the careburden of early‐onset AD caregivers. Methods: Twenty‐four patients with early‐onset AD and their caregivers participated in this study. Dementia severity, caregiver's burden, depressive mood and behavioral disturbance were measured and examined. Results: There was no significant difference between female and male caregivers in terms of careburden or depressive mood. However, when correlations were considered, female caregivers showed significant associations between careburden and the patient's age. Associations between the subscales of careburden were also shown for female caregivers. However. there was no significant correlation between the subscales of careburden and dementia severity and the number of behavioral problems for either female or male caregivers. Depression scores showed only correlations with the subscales of careburden for female caregivers. Conclusion: The present study examined the difference between the genders with respect to the care burden experienced by caregivers of early‐onset AD patients. The results reinforce those of previous studies in that female caregivers are more likely to experience careburden than male caregivers. The present study indicates the importance of mental health support for female caregivers.     

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics,caregiving burden,family functioning,and social and professional support

Objective: Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL.

Methods: 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed.

Results: Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD?=?3.7), 13.3 (SD?=?4.2), 11.0 (SD?=?4.7) and 13.5 (SD?=?3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis.

Conclusions: There is a significant association between the caregiver’s burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.     

Do determinants of burden and emotional distress in dementia caregivers change over time?†

Objectives: Caring for a patient with dementia is a real challenge and can have considerable psychological consequences in the long run. Many caregivers, mostly relatives, feel highly burdened. To develop effective caregiver support to prevent caregivers from getting overburdened, insight is needed into the determinants of burden. The objective of this study is to explore which patient and caregiver characteristics determine the different kinds of caregiver burden over time, both in the short and in the long run.

Method: The study was longitudinal. Data on patients and caregivers, general burden and emotional distress were collected at three times: at baseline, at the end of treatment and at nine months. The study was conducted in a psychiatric skilled nursing home with a unit for integrative reactivation and rehabilitation (IRR) and at different sites of home-/day care, assisted living arrangements and nursing home wards (usual care).

Results: General burden is shown to be determined by severity of patient's neuropsychiatric symptoms, caregiver's sense of competence, health-related quality of life. Emotional distress is determined by severity of patient's neuropsychiatric symptoms, caregiver's sense of competence, high affiliation and patient gender.

Conclusion: In preventing or treating caregiver burden, professional interventions need to aim specifically at diminishing the neuropsychiatric symptoms in dementia patients and improving the sense of competence in caregivers.     

Collaborative Integration of Palliative Care in Critically Ill Stroke Patients in the Neurocritical Care Unit: A Single Center Pilot Study

IntroductionPatients admitted to the Neurocritical Care Unit (NCCU) with moderate-to-severe acute strokes, along with their surrogate decision makers, have the potential for unrecognized or unmet emotional and psychological needs. Our primary objective was to determine if early integration of palliative care consultations within this cohort was feasible and would impact understanding, decision-making and emotional support to patients and their surrogate decision makers. Our secondary objective was to evaluate the long-term impact of early palliative care assessment on the development of post-traumatic stress disorder (PTSD).MethodsThis was a single center prospective pilot study. Patients with moderate-to-severe ischemic and hemorrhagic strokes were randomized into two arms. The control arm received standard intensive care and the intervention arm received an additional early palliative care consultation within 72 hours of hospitalization. Study assessments with the participants were obtained on day 1-3, and day 5-7 of care with comparisons of total scores on the Questionnaire on Communication (QOC), Decisional Conflict Scale (DCS), and Hospital Anxiety and Depression Scale (HADS). Furthermore, comparisons of HADS and PTSD DSM-5 (PCL- 5) scores were completed at 3 months. Linear mixed effects models were conducted to examine the association between intervention and participant's scores.ResultsA total of 22 participants were enrolled between February 2019 and April 2020. Statistically significant improvement in scores was seen in the total HADS score (p=0.043) and PCL5 score (p=0.033) at 3 months following intervention.ConclusionCollaboration between the intensive care and palliative care team with early palliative assessment may be beneficial in lowering anxiety, depression and PTSD symptoms in critically ill stroke patients and their caregivers. Further research is needed to validate these findings.     

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.     

Les proches aidants des personnes en état de conscience altérée : ruptures et continuité dans les relations

ObjectivesThis study seeks to better understand caregivers’ experience of the support their loved ones, with disorders of consciousness, receive in a dedicated unit.MethodsThe focus here is on the qualitative component of a larger study that also includes a quantitative component. An inductive and iterative approach was prioritized, i.e., one similar to grounded theory; a thematic analysis was used to analyze 20 comprehensive semi-structured interviews.ResultsThree main themes emerged: the discovery of a new world by a patient's loved ones, i.e., the disorders of consciousness; the psychological and somatic impact on loved ones; and the relationships between family caregivers and professionals of the dedicated unit.DiscussionThe new living situation of people with disorders of consciousness requires caregivers to engage in an intense psychological process. First, this process is necessary to their understanding of the situation and its consequences. Second, it allows them to cope with the reorganization of the emotional and relational ties between the patient and the caregiver, and in the entire family dynamic. Lastly, healthcare professionals consider that caregivers are also the witnesses of the patient's earlier life, capable of linking the past and present, and often the interpreters of patients’ emotional reactions according to their former personality.ConclusionCaregivers are affected by the frailty and somatic dependence of their loved ones; and they also bear the history and psychological continuity of patients. Professionals must take this double burden into account, which helps explain families’ psychological exhaustion and their need for help. Understanding these phenomena is crucial for improving patient care in dedicated units.     

Caregivers of people with disorders of consciousness: Relationship continuity and rupture

ObjectivesThis study seeks to better understand caregivers’ experience of the support their loved ones, with disorders of consciousness, receive in a dedicated unit.MethodsThe focus here is on the qualitative component of a larger study that also includes a quantitative component. An inductive and iterative approach was privileged, i.e., one similar to grounded theory; a thematic analysis was used to analyze 20 comprehensive semi-structured interviews.ResultsThree main themes emerged: the discovery of a new world by a patient's loved ones, i.e., the disorders of consciousness; the psychological and somatic impact on loved ones; and the relationships between family caregivers and professionals of the dedicated unit.DiscussionThe new living situation of people in an disorders of consciousness state of consciousness requires caregivers to engage in an intense psychological process. First, this is necessary to understand the situation and its consequences. Second, it allows them to cope with the reorganization of the emotional and relational ties between the patient and the caregiver, and in the entire family dynamic. Lastly, healthcare professionals consider that caregivers are also the witnesses of the patient's past life, capable of linking the past and present, and often the interpreters of patients’ emotional reactions according to their former personality.ConclusionCaregivers are affected by the frailty and somatic dependence of their loved ones, and they also bear the history and psychological continuity of patients. Professionals must take into account this double burden, which helps explain families’ psychological exhaustion and their need for help. Understanding these phenomena is crucial for improving patient care in dedicated units.