Communication Difficulties and their Association with Caregiving Burdens in Aphasic Dementia

Primary progressive aphasia (PPA) is a clinical dementia syndrome for which there is no effective disease-modifying treatment. Impairments in language are the primary and persistent symptoms, and severely limit participation in everyday activities and family conversations. Despite this, there are no published studies examining the objective relationship between conversation difficulties and caregiving burden in PPA. We tested the hypothesis that the severity of care partner perceived conversation difficulties predicts caregiving burden using the Perception of Conversation Difficulty-Dementia Alzheimer’s Type and the Montgomery Borgatta Caregiving Burden Scale. The analysis included baseline data from 78 care partners (62% female) enrolled in the Communication BridgeTM-2 randomized control clinical trial of a speech-language intervention for PPA. Care partners had a mean age of 64.5 years (SD=10.76) and a mean relationship duration with the PPA participant of 38.6 years (SD=15.29). Eighty-six percent were spouses, 5% were adult children, and the remaining 9% were friends or siblings. Higher ratings of conversation difficulties were associated with increased caregiving burden for both objective burden (p < 0.001) and subjective stress burden (p < 0.001). The relationship between conversation difficulties and objective burden was mediated by dependence in activities of daily living and care partner depression, whereas the relationship with subjective stress burden was mediated by depression only. This is the first large scale study of care partner reported conversation difficulties and caregiving burden in PPA. The finding that conversation difficulties have a direct relationship with caregiving burden is an important consideration for interventions and outcome measurement in PPA.

Examining the Influence of Social Interactions and Community Resources on Caregivers’ Burden in Stroke Settings: A Prospective Cohort Study

Since the introduction of the integrated care model, understanding how social interactions and community resources can alleviate caregivers’ burden is vital to minimizing negative patients’ outcomes. This study (n = 214) examined the associations between these factors and caregivers’ burden in stroke settings. It used 3-month and 1-year post-stroke data collected from five tertiary hospitals. Subjective and objective caregivers’ burdens were measured using Zarit burden interview and Oberst caregiving burden scale respectively. The independent variables examined were quality of care relationship, care management strategies for managing patients’ behaviour, family caregiving conflict, formal service usage and assistance to the caregiver. Significant associations were determined using mixed effect modified Poisson regressions. For both types of burden, the scores were slightly higher at 3 months as compared to 1 year. Poorer care-relationship (relative risk: 0.81, 95% confidence interval (CI): 0.70–0.94) and adopting positive care management strategies (relative risk: 1.05, 95% CI: 1.02–1.07) were independently associated with a high subjective burden. Providing assistance to caregivers (relative risk: 2.45, 95% CI: 1.72–3.29) and adopting positive care management strategies (relative risk: 1.03, 95% CI: 1.02–1.04) were independently associated with a high objective burden. Adopting positive care management strategies at 3 months had a significant indirect effect (standardised β: 0.11, 95% CI: 0.01 to 0.20) on high objective burden at one year. Healthcare providers should be aware that excessive care management strategies and assistance from family members may add to caregivers’ burden.

Burden on caregivers of schizophrenia outpatients in Brazil: Relationship to symptomatology and functioning

Background: To investigate the objective and subjective burden on caregivers of schizophrenia outpatients and their associations with sociodemographic factors, symptomatology, and functioning. Methods: This study included 60 schizophrenic outpatients aged 18 to 65 years who were clinically stable for at least 6 months, and 60 caregivers aged 18 to 80 years who were in contact with the patient for ⩾30 hours/week. The patients were assessed using a sociodemographic questionnaire, the Clinical Global Impression Scale for Schizophrenia (CGI-SCH), and the Personal and Social Performance scale (PSP). The caregivers were assessed using a sociodemographic questionnaire and the Family Burden Interview Schedule, Brazilian version (FBIS-BR). Results: The objective burden was positively correlated with CGI-SCH cognitive symptom scores ( p = .032) and number of hours spent weekly with the patient ( p = .028), and negatively correlated with PSP score ( r = −.346, p = .007). The subjective burden showed a negative correlation with age of disease onset ( r = −.338, p = .08). The independent variables included in the regression model were family income ( p = .005), PSP score ( p = .009), patient marital status ( p = .012), patient gender ( p = .046), and reception of financial benefit ( p = .027) for objective burden; and disease duration ( p = .045) and father/mother or sibling relationship ( p = .001) for subjective burden. The coefficient of determination ( R2) of the linear regression model for objective burden was 39.4%; subjective burden, 21.6%. Conclusion: Caring for female, single patients with longer disease duration, more severe cognitive symptoms, impaired functioning, and more caregiving time required per week were associated with higher caregiver burden levels.

Spousal Dementia Grief: A Research Report from the Two-Track Model of Dementia Grief Project

Caregiving for a loved one suffering from cognitive decline involves coping with many challenges and losses. This experience increases the risk of worsening the physical and mental health of the caregiver and has been the subject of a substantial number of studies focusing on the stress and burden of the primary caretaker. Theory and research on the grief reactions experienced by the family members, however, continues to lag in terms of the attention given to the behavioral and psychological burden of caregivers. This study aimed for a deeper understanding of the emotional processes in an individual involved in caring and caregiving for a spouse suffering from cognitive decline, through the prism of the Two-Track Model of Dementia Grief (TTM-DG). The TTM-DG emphasizes the continuous emotional attachment to the loved one suffering from cognitive decline (Track II), along with a medico-psychiatric perspective associated with stress, trauma, and changes in life (Track I). In this research project, we examined the degree to which spouses of cognitively impaired, deceased, and healthy partners showed differences and perceptible patterns considering the elements associated with the model and their interrelationship. These elements include behavioral characteristics of the clinical patients suffering from cognitive decline, objective circumstances of the caregiving situation, personality measures of attachment of the caring spouse, and a range of measures assessing psychological well-being and spousal relationship. The current study is a part of a larger ongoing project in Israel to address loss and grief among caregiving family members whose loved ones suffer from cognitive decline. The findings reported in the current paper are based on data derived from self-report questionnaires (i.e., socio-demographic variables, problematic behaviors in patients, objective burden, social support, physical health status, attachment patterns, depression, dementia grief, and relationship satisfaction). Participants in the sample size of 49 came from three groups: (a) spouses of patients suffering from cognitive decline, (b) widowers of deceased dementia sufferers, (c) and a control group of similarly aged participants whose spouses have no cognitive or functional impairment. Examination of the research hypotheses was done by running correlations and one/two-way analyses of variance (ANOVA). Behavioral disorders in the affected spouse correlated positively with the objective burden of the caring/caregiving spouse and with outcome variables. That is, biopsychosocial functioning (Track I) and the ongoing attachment bond with the ill spouse (Track II); objective burden correlated positively with depression and dementia grief, but not with relationship satisfaction; poor caregiver’s physical health was associated positively with depression and dementia grief, but not with relationship satisfaction; social support correlated positively with low levels of depression and dementia grief, as well as to the higher degree of relationship satisfaction; insecure attachment was found to correlate positively with depression and dementia grief, but not with relationship satisfaction. Spouses of cognitively impaired patients reported more difficulties in outcome variables compared to the control group; widowers of deceased dementia sufferers reported higher levels of dementia grief and depression than the control group. In terms of outcome measures, there was no difference between widowers and spouses of cognitively impaired patients. Among the control group participants, there was no difference between secure and insecure attachment on outcome variables. A significant difference between secure and insecure attachment on outcome variables was observed among spouses of cognitively impaired patients and widowers so that insecure participants reported higher levels of distress. The findings of the present study constitute the initial empirical evidence for the utility of the TTM-DG and support the transition of the field of loss and bereavement, which emphasizes the importance of the emotional attachment with the loved one as one of the primary foci of the process of coping with the loss. Furthermore, the findings highlight factors that contribute to the health and emotional resilience (secure attachment style, perceived social support, etc.) and provide a framework that can assist in the process of clinical assessment and intervention to improve the quality of life of caregivers whose loved one suffers from cognitive decline.

Caregivers of schizophrenic patients in Calabar: Extent and predictors of burden

Objectives: Caregivers of people with mental disorders usually experience consequences which might generate burden and have an effect on each aspect of their life. This study aimed to assess the extent and associated factors of burden on caregivers of schizophrenic patients seen at the Federal Psychiatric Hospital Calabar, Nigeria. Material and Methods: A hospital-based cross-sectional study design was used to study 100 consecutive caregivers of patients with schizophrenia seen at the outpatient clinic of the hospital between 15 December 2019 and 21 April 2020. Data were collected from the study participants using socio-demographic questionnaire, Patient Health Questionnaire-9, Brief Psychiatric Rating Scale (BPRS), and Family Burden Interview Schedule. Quantitative data were presented as mean (standard deviation) and categorical data as frequency/percentages. Statistical analysis was performed using independent sample t-test. Multivariate analysis was performed to determine the predictors of burden on caregivers. All values of P < 0.05 were considered significant. Results: Ninety percent and 88% of the caregivers, respectively, had some level of objective and subjective burden. The factors associated with objective burden on the caregivers were employment status of the patient, BPRS score, number of suicide attempts, and number of hours per week the caregiver was in contact with the patient. The subjective burden was associated with BPRS score, number of hospitalization, number of relapses, monthly income of the caregiver, and caregiver’s level of education. The employment status of the patient significantly predicted objective burden on the caregiver (P < 0.001). Conclusion: This study showed that caregivers of patients with schizophrenia experience high level of burden. The study also identified factors which might guide clinicians to institute intervention programs aimed toward reducing burden on the caregivers of schizophrenic patients.

T229. CAREGIVER BURDEN IN TREATMENT RESISTANT VERSUS NON-TREATMENT RESISTANT SCHIZOPHRENIA

Background About one-third of patients with schizophrenia are treatment-resistant (TRS). They cause a significative burden for their caregivers (1). Our objective is to compare caregiver burden in TRS versus non-TRS outpatients with schizophrenia. Methods Patients with diagnosis of schizophrenia (DSM-5), 18–50 years, both sexes, and a relative/caregiver, both sexes, aged 18 to 70 years, living in contact with the patient ≥30 hours/week. The use of clozapine for more than 6 months, in stable daily dosage was used as a proxy for TRS; non-TRS were patients using other antipsychotics, with stable dosage for at least 6 months. Psychopathology was evaluated with the CGI-Schizophrenia Scale (2). Family burden was assessed with the Family Burden Interview Schedule (FBIS-BR), objective and subjective total and subscores (3). Student’s t-test and chi-square test were used to compare TRS versus non-TRS patients and caregivers. Results TRS patients: n = 45; (31 male, 14 female); mean age: 37.11 ± 8.93 years; age at onset of illness 20.84 ± 6.20 years; duration of disease: 16.51 ± 9.14 years. CGI: positive: 3.96 ± 1.22; negative: 3.62 ± 1.17; depressive: 2.36 ± 0.98; cognitive: 3.76 ± 1.26; total: 13.66 ± 3.31. TRS Caregivers: n=45 (12 male, 33 female); mean age: 56.7 ± 11.04 years; in contact with the patient 82.53 ± 36.98 hours/week. Non-TRS patients: n= 15 (9 male, 6 female); mean age: 36.00 ± 12.49 years; age onset of illness 21.93 ± 9.73 years; duration of disease: 14.20 ± 13.66 years. CGI: positive: 2.40 ± 1.40; negative: 3.40 ± 1.24; depressive: 2.33 ± 1.11; cognitive: 3.20 ± 0.86; total: 11.33 ± 3.51. Non TRS Caregivers: n=15 (2 males, 13 female); mean age: 53.13 ± 13.61 years; in contact with the patient 106.13 ± 62.47 hours/week. Sociodemographic variables showed no significant differences were observed between TRS and non-TRS groups. CGI positive and total scores were significantly higher in TRS patients compared to non-TRS patients (p&lt;0.001 and p&lt;0.024 respectively). FBIS-BR Scores: TRS caregivers: The mean total score of the objective burden was 2.41 ± 0.66 and subjective burden was 2.00 ± 0.64. Assistance to the patient in daily life (objective) was 2.99 ± 0.55 and its subjective score was 1.56 ± 0.80. Supervision of patients’ problematic behaviors was 1.81 ± 0.61 and its subjective score was 1.00 ± 1.00. Impact on family routine was 2.43 ± 1.13 and worries about the patients’ present and future life (subjective) was 3.45 ± 0.70. Non TRS caregivers: The mean total score of the objective burden was 2.42 ± 0.58 and subjective burden was 2.18 ± 0.51. Assistance to the patient in daily life (objective) was 3.30 ± 0.80 and its subjective score was 1.91 ± 0.93. Supervision of patients’ problematic behaviors was 1.80 ± 0.51 and its subjective score was 0.94 ± 0.59. Impact on family routine was 2.16 ± 0.86 and worries about the patients’ present and future life (subjective) 3.68 ± 0.55. No significant differences were observed between the TRS and non-TRS caregivers’ groups. Discussion Contrary to our initial expectation (1), TRS and non-TRS caregivers showed similar burden, even though TRS patients had higher positive scores on the CGI. This lack of difference may be due to small number of patients in the non-TRS group; non-TRS patients might be refractory but did not receive clozapine yet. It is also possible that TRS caregivers adapt to the caring of these severe patients and learn to deal with the burden the disease.

Spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

Background: To comprehensively examine and carefully compare caregiving experiences and impacts between spouse and parent caregivers for people living with schizophrenia in China. Methods: A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of people living with schizophrenia. Face-to-face interviews were conducted to collect information on caregiving activities, both objective and subjective burden, caregiver psychological distress including depression and anxiety, positive caregiving impact including caregiving rewarding feelings and family functioning between spouse and parent caregivers. Results: Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (β=7.93, 95%CI:2.13, 13.73), which is also reflected in significantly higher depression (β =3.60, 95%CI:1.09, 6.12) and anxiety scores (β=2.37, 95%CI: 0.08, 4.65), and reports of lower family functioning (β =-1.61, 95%CI: -2.73, -0.49). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions: The findings may be explained by the difference between subjective burden and objective burden, as well as the unique cultural and social characteristics of family caregivers in China. The study discusses implications for future intervention, particularly for parents as family caregivers. Keywords: Schizophrenia; family caregivers; caregiver burden; caregiving, parent, spouse

Social inequalities in the burden of care: a dyadic analysis in the caregiving partners of persons with a physical disability

Background Socioeconomic position (SEP) is an important contextual factor in the Stress Process Model of caregiving. However, the basic assumption that low SEP is associated with greater caregiver burden has so far lacked empirical support. The objective of this study was to investigate social inequalities in the caregiver burden among caregiving partners of persons with a physical disability, i.e., spinal cord injury (SCI), applying a dyadic approach. More specifically, we investigated 1) the association of the caregivers’ SEP with caregiver burden (‘actor effect’); 2) the association of the care-receivers’ SEP with caregiver burden (‘partner effect’), and 3) potential mediators of the association between SEP and caregiver burden. Methods Cross-sectional survey data from 118 couples of persons with SCI and their partners living in Switzerland was used. We firstly employed logistic regression to investigate the actor and partner effects of SEP on objective (hours of caregiving) and subjective caregiver burden (Zarit Burden Interview). We additionally used structural equation modelling to explore whether unfulfilled support needs, psychosocial resources and the care-receivers health status mediated the association between SEP and caregiver burden. SEP was operationalized by household income, education, subjective social position, financial strain and home ownership. Results We observed a consistent trend towards higher objective and subjective burden in lower SEP groups. Caregivers with higher subjective social positon and home ownership indicated lower subjective burden, and caregivers with higher education and absence of financial strain reported lower objective burden. Further evidence suggested a partner effect of SEP on caregiver burden, whereby objective caregiver burden was reduced in couples where the care-receiver had a higher educational level. The negative association between SEP and subjective burden was partially mediated by the unfulfilled support needs and deprived psychological resources of the caregiver, and the poor health status of the care-receiver. Similar mediation effects were not supported for objective burden. Conclusions Our study, in the context of SCI, provides support for the contextual role of SEP in the Stress Process Model of caregiving. To reduce subjective caregiver burden, policy programs may target the strengthening of psychosocial resources, or the improvement of access to support services for caregivers with low SEP.

Assessment of the burden of caregiving among parents of children with Autism Spectrum Disorder attending Child Autism Center in Sulaimani city

Background: A growing body of evidence suggests that parent’s caregivers of a child affected with autism spectrum disorder experience high rate of anxiety, stress and poorer overall well-being. Autism spectrum disorder is a lifelong neurodevelopmental disability that includes deficits in social, communication and repetitive behaviors. Objective: To assess the type and severity levels of caregiving burden as perceived by parents of children with autism spectrum disorder. Methods: A quantitative descriptive design is used in this study. A non-probability, purposive sample size of (40) parents (24mothers and 16fathers) assuming the role of caregivers of (40) children with autism spectrum disorder attending Sulaimani Autistic Center. A questionnaire was developed including the Montgomery family caregivers burden scale to measure parent’s burden. An intervention method was used to collect data from parent’s participants. The statistical analysis was performed by statistical package of social science spss-22. Results: The children with autism spectrum disorder mostly male, mean age 7.5 years and first child ranking in the family. The mother caregivers mostly housewife and mean age 36.8 years. And father mostly governmental employed and mean age 43.9 years. The parent’s experience high severity level of objective burden (3.37± 1.18) and moderate level of stress burden (2.37± 1.30) and demand burden(2.28± 1.22), no statistically significant difference between total burden scale of caregiving in regard to parents socio-demographic characteristics (P˃0.05 Conclusion: The parent’s caregivers of children with autism spectrum disorder experiencing high severity level of objective burden of caregiving was mainly related to decrease time for their personal and social life, and moderate level of subjective stress burden was related to anxiety, worry and nervousness.