Predictors Of Caregiver Burden Research Articles

Predictors of caregiver burden in patients with neurologic Wilson disease.

ObjectivesCaregiver burden in neurologic Wilson disease (NWD) has received little attention. We investigated predictors of caregiver burden in Chinese NWD patients.MethodsParticipants in this retrospective study were NWD patients admitted to The First Affiliated Hospital of Anhui University of Traditional Chinese Medicine from 1 August to 31 December 2019. Sociodemographic information was recorded for caregivers and NWD patients. Caregiver burden was evaluated using the Caregiver Burden Inventory (CBI). Cognitive impairment, functional problems, depression and anxiety were evaluated by professional interviewers. Path analysis was used to evaluate predictors of CBI scores.ResultsSixty NWD patients were enrolled (mean age: 21.35 ± 4.89 years; mean NWD duration: 7.85 ± 3.11 years). The mean CBI score was 52.00 ± 17.16. Care duration had a significant direct effect on CBI score after controlling for confounders (r = 0.493). Cognitive impairment (r = −0.426), functional problems (r = 0.581), depression (r = 0.349) and anxiety (r = 0.317) had significant indirect effects on CBI score.ConclusionCaregivers of NWD patients may experience a medium level of caregiver burden. NWD duration, cognitive impairment, functional problems, depression and anxiety in NWD patients may be useful predictors of caregiver burden.

Prediction of caregiver burden in amyotrophic lateral sclerosis: a machine learning approach using random forests applied to a cohort study

ObjectivesAmyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease that is characterised by the rapid degeneration of upper and lower motor neurons and has a fatal trajectory 3–4 years from...

Caregiver Burden and Related Factors Among Caregivers of Patients with Myotonic Dystrophy Type 1.

Multi-systemic symptoms of varying severity in myotonic dystrophy type 1 (DM1) may pose difficulties in caregiving. However, the factors which affect their care burden are yet to be sufficiently understood. We investigated care burden and its correlates among caregivers of patients with DM1. General demographic information was obtained from patients with DM1, as well as Barthel index (ADL), body mass index, and genetic information. Patients completed SF-36v2 (health-related quality of life), CES-D (depressive symptoms), and ESS (daytime sleepiness) questionnaires. Caregivers reported their perception of patient's status through these questionnaires, and completed Zarit Caregiver Burden Interview (ZBI). Correlation analysis of these variables were performed, and regression analysis was utilized to assess the relationship between caregiver burden and other variables. Forty-three patient-caregiver dyads participated. Mean ZBI score was 20.7±17.4, and 32.6% reported a significant care burden. ZBI correlated with caregiver-reported CES-D, but not with patient-reported CES-D. Both patient-reported and caregiver-reported physical QoL of patients correlated with patient ADL. Multiple regression analysis revealed that the combination of caregiver-reported CES-D, caregiver-reported mental QoL, and genetic characteristics predicted caregiver burden. Caregiver burden was felt although patients were relatively well-functioning. Patients' and caregivers' assessment of patients' physical condition were similar. However, they did not agree on the evaluation of the patients' psychological state. Cognitive characteristic of the patients and the caregivers' perception of the patients' state may have affected the results. Future DM1 care strategies need to work on improvement of patient-caregiver communication and provide support for the caregiver's psychological health.

Caregiver Burden and Spiritual Well-being in Caregivers of Hemodialysis Patients.

The number of hemodialysis patients is increasing worldwide, and the caregivers of these patients experience a great burden. This study was conducted to examine the relationship between caregiver burden and spiritual well-being in caregivers of hemodialysis patients in Kerman, Iran. This correlational study was conducted on 382 caregivers of hemodialysis patients. Data were collected using the Caregiver Burden Inventory (24 items) and Ellison and Paloutzian 20-Item Spiritual Well-being Questionnaire. Data were analyzed by descriptive and inferential statistics (t test, ANOVA, Spearman correlation, and linear regression analysis) in SPSS 20 software. The findings showed that 45 (11.8%) caregivers had mild, 214 (56%) moderate, and 123 (32.2%) high caregiver burden. Furthermore, 1 (0.3%) caregiver had mild, 349 (92.4%) moderate, and 32 (8.4%) high spiritual well-being. Also, Spearman correlation test showed a significant reveres relationship between caregiver burden and spiritual well-being scores (p < 0.001, r = - 0.41). Moreover, the results of the regression analysis showed that the patient's income, frequency of patient dialysis per week, and patient's need to receive care and spiritual well-being were predictors of caregiver burden, which explained 41% of the burden in caregivers. The results of this study revealed that spiritual well-being was negatively related to caregiver burden and was one of its predictors. Therefore, spirituality can be used as a low-cost and effective intervention to reduce the caregiver's burden.

Predictors of Caregiver Burden among Parents of Children with Cancer

Background: Cancer is one of the most common diseases in children. Cancer in children can cause many problems for parents, and impose heavy care burden on them, which can lead to negative health consequences. The aim of this study was to determine caregiving burden and relevant influential factors among parents of children with cancer. Materials and Methods: This cross-sectional descriptive study was done on 125 parents of children with cancer in oncology department of Shohada Hospital, Tehran, Iran, during March to August 2017. Caregiving burden was measured using the Caregiver Burden Scale. Descriptive statistics, independent-samples T test, one-way ANOVA, Pearson’s correlation analysis, and multivariate linear regression analysis (stepwise method) were used in data analysis with SPSS software (v.19). Results: The mean score of parents’ care burden was 52.76 ± 10. Moreover, 17.6%, 71.2% and 11.2% of parents had low, moderate, and high care burden, respectively. Regression analyses indicated that the factors associated with care burden were cancer type (Acute myeloid leukemia (β=0.36, p&lt;0.001) and Ewing sarcoma (β=0.16, p=0.007)), the number of hospitalization (β=0.38, p&lt;0.001), duration of disease (β=-0.31, p&lt;0.001), parent’s age (β=-0.29, p&lt;0.001), parent’s income (β=-0.23, p&lt;0.001), and child’s age (β=0.24, p&lt;0.001). These variables accounted for 65% of the variance in care burden. Conclusion: The result of this study demonstrated that most of parents of children with cancer had moderate levels of care burden. Different variables increased care burden in parents. Therefore, planning for holistic interventions to reduce care burden in parents and improve quality of care is necessary.

Caregiver Burden in Gastroparesis and GERD: Correlation with Disease Severity, Healthcare Utilization and Work Productivity.

Caregiver burden can be significant in chronic gastrointestinal diseases. No studies have been performed to evaluate caregiver burden in gastroparesis or gastroesophageal reflux disease (GERD). (1) Assess the caregiver burden in gastroparesis and GERD patients and healthy volunteers (HVs); (2) correlate the caregiver burden of these patients to the severity of patients' symptoms, healthcare utilization, and work productivity of the patients and the caregivers. Patients with gastroparesis and GERD, seen between June 2018 and November 2018, completed Patient Assessment of Gastrointestinal Symptoms, Work Productivity and Activity Impairment (WPAI) and healthcare utilization questionnaires. The caregivers of these patients completed Zarit Burden Interview (ZBI) and WPAI questionnaire. HVs and their potential caregivers also completed these questionnaires. Forty-seven patients (gastroparesis = 31, GERD = 17), 12 HVs, and their caregivers completed questionnaires. Caregivers of gastroparesis patients reported high burden on ZBI (27.7 ± 2.9), greater than the caregivers of GERD (14.9 ± 2.5) and HVs (5.5 ± 1.6, p < 0.01). Among all patients, the caregiver burden had a strong correlation with patients' Gastroparesis Cardinal Symptom Index (GCSI) total score (rs = 0.63, p < 0.01) and moderate correlations with the number of patients' physician office visits (rs = 0.46, p < 0.01) and the number of work hours missed by caregivers due to patients' symptoms (rs = 0.36, p = 0.04). Using multivariable regression, both presence of gastroparesis and other comorbidities significantly predicted caregiver burden, F(2, 33) = 15.94, p < 0.0001, R2 = 0.491. Caregivers of gastroparesis patients have high caregiver burden that strongly correlates with patients' GCSI total score. Interventions to reduce symptom severity of Gp patients may reduce the caregiver burden.

The Role of Sexual Disinhibition to Predict Caregiver Burden and Desire to Institutionalize Among Family Dementia Caregivers.

Neuropsychiatric symptoms in dementia are associated with greater caregiver burden and desire to institutionalize, though previous work largely examines the cumulative effects of many behavioral symptoms. Sexual disinhibition could be particularly stressful due to stigma attached to these behaviors. Links between care recipient sexual disinhibition, caregiver burden, and caregiver desire to institutionalize were examined by analyzing cross-sectional data from 730 family caregivers recruited online. Caregiver burden, caregiver desire to institutionalize, and neuropsychiatric symptoms, including sexual disinhibition, were assessed via caregiver report. Burden (P < .001) and desire to institutionalize (P = .008) were greater among caregivers who endorsed sexual disinhibition. Sexual disinhibition uniquely predicted desire to institutionalize after accounting for presence (P = .02) and severity (P = .03) of other neuropsychiatric symptoms. A similar pattern was seen for burden (presence P < .04; severity P = .06), and follow-up analyses revealed caregiver burden mediated the relationship between care recipient sexual disinhibition and caregiver desire to institutionalize (presence bias-corrected 95% confidence intervals [BCa 95% CI] [0.003, 0.08], severity BCa 95% CI [0.007, 0.06]). Sexual disinhibition appears to be a particularly difficult neuropsychiatric symptom for the family caregiver, contributing to desire to institutionalize via caregiver burden.

Roles of Family Caregivers and Perceived Burden When Caring for Hospitalized Adult Cancer Patients

Family caregivers (FCGs) of adult cancer patients (ACPs) are typically involved in the entire trajectory of cancer disease, from diagnosis to survivorship or end of life. In developing countries, FCGs are more intensely involved in the process of providing care to the hospitalized ACPs because of lack of adequate cancer care resources. Active performance of tasks to meet the needs of ACPs in the hospital setting is likely to elicit significant caregiver burden. The aim of this study was to explore the tasks performed and the caregiver burden experienced by FCGs of hospitalized ACPs in a sub-Saharan country. A cross-sectional descriptive design was used to collect data from 168 FCGs of ACPs. The Caregiver Burden Scale was used to measure burden. The most common cancer diagnosis in male and female ACPs was Kaposi's sarcoma (32.1%) and breast cancer (37.9%), respectively. The tasks regularly performed by most FCGs for the ACPs were providing emotional support (79.8%), feeding (68.5%), transporting to other appointments (62.5%), preparing meals (55%), and giving medications (46.4%). Most FCGs (75%) were experiencing severe or very severe general caregiver burden. The dimensions of caregiver burden that were most severely impacted were general strain (70.6%), disappointment (85.8%), and isolation (72%). Predictors of caregiver burden are reported. Family caregivers of hospitalized ACPs experience severe caregiver burden. The main forms of burden experienced were general strain, disappointment, and isolation. Cancer care services in developing countries should be strengthened with services that address FCGs' emotional needs and human resources to curtail the strain imposed on FCGs.

Relationship Consensus and Caregiver Burden in Adults with Cognitive Impairments 6 Months Following Stroke.

Caregiver burden is commonly experienced in caregivers of adults with cognitive impairment after stroke. This burden can be associated with caregiver-centered factors, including caregiver-perceived relationship quality. To examine the role of caregiver-perceived relationship quality on caregiver burden at 6 months following stroke. Prospective observational study. Community settings. Adults enrolled in two randomized controlled trials after stroke (n = 60) and their caregivers (n = 60). Three constructs of relationship quality (relationship consensus, cohesion, and satisfaction) were examined as predictors of caregiver burden (the Abbreviated Dyadic Adjustment Scale). A hierarchical logistic regression and a Poisson regression with robust standard errors were used to examine the effect of relationship quality on caregiver burden while controlling for characteristics of stroke survivors and caregivers. Caregiver burden was measured with the abridged version of the Zarit Burden Interview. Poor relationship consensus (odds ratio [OR] = 1.48; 95% confidence interval [CI] = 1.06-2.07; P = .02) increased the odds of high caregiver burden after controlling for characteristics of stroke survivors (age, comorbidity, cognitive fluency) and caregivers (gender, self-reported health). Relationship cohesion (OR = 1.03; 95% CI = .84-1.25; P = .81) and relationship satisfaction (OR = 1.53; 95% CI = .75-3.10; P = .24) did not predict caregiver burden. Meaningful and agreeable goals and expectations between dyads are essential to reduce caregiver burden after stroke. Collaborative goal-setting between stroke survivors and their caregivers may be a promising intervention strategy to increase relationship consensus and reduce caregiver burden. III.

Finding fault: Criticism as a care management strategy and its impact on outcomes for dementia caregivers.

Despite a large literature on the stress process, little attention has focused on how caregivers for persons living with dementia (PLWDs) provide care and how this may impact care outcomes. Criticism is a management strategy caregivers may use to respond to behavioral symptoms. We consider whether criticism is associated with caregivers' mental health and service utilization. Data are drawn from the Advancing Caregiver Training intervention study including 256 informal caregivers living with a PLWD. In multiple linear regressions controlling for caregivers' demographics and PLWDs' clinical factors, we consider criticism (criticism subscale of the Dementia Management Strategies Scale) as a predictor of caregiver burden, depressive symptoms, desire to institutionalize the PLWD, level of frustration with care, and the number of home-based, social, and health services utilized. On average, 15% of the sample sometimes reported using criticism as a management strategy to manage the challenges of care. Greater use of criticism was associated with significantly more caregiver burden (β=0.26, P<0.001) and frustration with caregiving (β=0.66, P<0.001), but not depressive symptoms or a desire to institutionalize the PLWD. Criticism was also associated with significantly greater utilization of home-based (β=0.14, P<0.05) and social services (β=0.15, P<0.05), but not health care services. Criticism appears to be used by more burdened and frustrated caregivers. The association of criticism with social and home-based services potentially reflects a need for greater support among this group of caregivers. Behavioral interventions that can help caregivers manage behavioral symptoms with positive, empirically validated strategies may be helpful.

Characteristics of burden, coping strategies, and quality of life: The effect of age, gender, and social variables in caregivers of renal transplanted patients from Southern Andhra Pradesh, India

Background:Evaluation of burden, coping strategies, and quality of life (QOL) in caregivers may lead to specific interventions to reduce the burden among caregivers.Methods:In this prospective study, characteristics of burden, coping strategies, and QOL in caregivers was investigated and also studied the effect of age, gender, and social variables on these concepts.Results:Mean burden score of the caregivers was 28.66 ± 2.02. Thirty percent of caregivers had mild-to-moderate burden followed by moderate-to-severe burden (20%). Seeking social support was the dominant coping strategy used by the caregivers. Role limitations due to the physical health (RLDPH) and role limitations due to emotional problem (RLDEP) were compromised subscales of QOL. The mean score of RLDPH (P = 0.007) and RLDEP (P = 0.014) were found to be significantly higher in males than that of females. Marital status, education, type of relationship with the patient, religion, occupation, and duration of care giving showed significant effect on burden, coping strategies, and QOL. Lower emotional well-being (P = 0.003) and escape avoidance (P = 0.000) in males and lower physical component (PC) (P = 0.002) in females and lower PC (P = 0.000) and escape avoidance (P = 0.001) were found to be the significant predictors of burden in caregivers of renal transplanted patients.Conclusion:Predictors of burden and QOL subscales varies by gender. Social and clinical variables influence the QOL subscales. Gender- and social group-specific interventions rather than global interventions may reduce the burden of caregivers.

Predictors of caregiver burden after stroke in Nigeria: Effect on psychosocial well-being.

Background:Family caregivers (CGs) are critical to the care and recovery of stroke survivors (SSs), particularly in the community. However, little is known about their psychosocial well-being, especially in developing countries. In this study, we assessed CG burden, psychiatric morbidity, quality of life (QoL), and predictors of burden.Materials and Methods:We recruited 150 dyads of CGs/SSs from two outpatient clinics in Nigeria. Data were collected through sociodemographic/clinical questionnaire, the Zarit caregiver burden interview, the World Health Organization QoL-BREF, and the Mini-International Neuropsychiatric Interview. Disability in SSs was graded with the Modified Rankin Scale.Results:Compared to CGs who were mostly females (86.7%) with a mean age of 42.8 (±12.6) years, SSs were older with a mean age of 61.6 (±12.5) years and were mainly males (62.7%). The mean CG burden score was 31.6 (±10.5) and eight in 10 CGs, 124 (82.7%) reported moderate-to-severe burden scores. Mental disorders in the form of depression and/or anxiety disorders were diagnosed in 26 (17.3%) CGs. Significant predictors of high-burden scores (P < 0.05) were incontinence in SSs, psychological symptoms in SS, worse poststroke disability, and performance of more CG tasks (B = 8.3, 4.5, 3.9, and 3.5, respectively). CGs QoL scores correlated negatively with burden scores, with medium-to-large effect sizes (r = −0.4–−0.6) across QoL spheres.Conclusion:In this study, psychosocial burden in CGs was indexed by various determinants and impacted QoL negatively. Given the integral role of CGs to the care of SSs in the community, mental health services, psychosocial support programs, and stratification based on known vulnerability factors seems viable options for intervention, assessment, and planning.

Predictors of caregiver burden and care costs for older persons with dementia in Taiwan.

This study interviewed 231 PWD-caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan in 2013. A follow-up study was conducted a year later, and 167 dyads completed the second interview. Data collected included PWD characteristics, caregiver characteristics, relationship to PWD, and social support to caregivers. Caregiver burden was measured with the Zarit Burden Interview instrument. The association between each predictor variable and cost of care and caregiver burden scores was examined using linear mixed models. Predictors of care costs were found to be different from predictors of caregiver burden: functional declines measured by Katz's activities of daily living (ADL) scale were associated with total cost as compared to behavioral disturbance measured by Neuropsychiatric Inventory (NPI), which showed no impact on care costs. However, NPI was a significant predictor of caregiver burden. Caregivers who were better-off financially also reported significantly lower caregiver burden. Since predictors of care costs were different from the predictors of caregiver burden, providing training to caregivers in addressing PWD's behavioral disturbance and proving financial assistance to low income caregivers could be effective in reducing caregiver burden.

Predictors of caregiver burden in mothers of children with leukemia and cerebral palsy

Objective: Caring for a sick child can lead to considerable burden in the caregiver. Comparative studies of burden in mothers of children with different types of disorders are rare. Methods: We assessed levels of and risk factors for burden in mothers of children with leukemia (n: 70) or with cerebral palsy (CP) (n: 69). Subjects were recruited from two hospitals in Ankara.Results: Levels of burden or depression were not different between groups. Burden was predicted by the presence of depression in the mother and severity of illness in both groups. In the leukemia group, mothers reported higher burden if the child was male or younger; no such relationship was observed in the CP group.Conclusion: Our results show that type of illness has an effect on levels of burden. Mothers of children with leukemia should receive more attention, especially if their child is male or younger, to take preventive measures against burden.

A Meta-analytic Study of Predictors for Informal Caregiver Burden in Patients With Stroke

BackgroundSeveral studies have reported on predictors for caregiver burden in patients with stroke, but the magnitude of the impact of these variables remains unclear. The aim of the study was to determine the magnitude of relationship between each predictor and caregiver burden. MethodsArticles related to this filed were search in PUBMED, MEDLINE and Cochrane Library electronic database from the upset to May 2018. Of the 812 articles identified, 22 were included in the final analysis (3025 patients and 2887 caregivers). Weighted correlation coefficient (r-index) was computed as effect size for each predictor. ResultsOf predictor variables of patients, the activity of daily living and anxiety had moderate to large effect sizes; gender, neurological function and depression had the small to moderate effect sizes. Of caregivers’ predictors, depression, anxiety, and sense of coherence had large effect sizes; gender, daughter in law, physical health and employment status had small to moderate effect sizes. ConclusionsThe most powerful predictors of caregiver burden using meta-analysis were identified to direct future research and evidence-based practice.

Predicting caregiver burden in informal caregivers caring for persons with dementia living at home - A follow-up cohort study.

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers' negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers' negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.

Factors contributing to higher caregiving burden in Turkish mothers of children with autism spectrum disorders

ObjectivesThe aim of this study was to explore the caregiver burden and related factors such as expressed emotion (EE), social support, life satisfaction, dyadic adjustment, post-traumatic growth, and socio-demographic characteristics of mothers with autism spectrum disorder (ASD) children.MethodsSixty-two mothers of children with autism spectrum disorder and 60 mothers of typically developing children completed the Zarit Burden Scale, the Multidimensional Scale of Perceived Social Support, the Satisfaction with Life Scale, the Dyadic Adjustment Scale, the Expressed Emotion Scale, and the Post-Traumatic Growth Inventory. The Autism Behavior Checklist was used to examine the severity of autistic behaviors. A socio-demographic data form was applied to the subjects. Participants were recruited in Autistic Children Education Center, homes, and workplaces. Correlation analysis, independent-samples t-tests, post hoc Mann–Whitney U, and SEM tests were conducted for statistical analyses.ResultsHigher maternal caregiving burden was associated with lower life satisfaction and higher level of disability in Turkish children with ASD. Also, higher life satisfaction of mothers with ASD children was related to higher social support and dyadic adjustment, and lower EE. According to the SEM analysis, disability percentages, autism-related behaviors in children, and poor dyadic adjustment were significant predictors of caregiving burden in these mothers which in turn resulted with higher EE and poor life satisfaction.ConclusionsThere are several studies that have investigated the distress in parents of children with developmental disabilities in general, but caregiving burden in ASD was not evaluated elsewhere in detail. These mothers need professional guidance and psychosocial support during the parenting process. Further studies that aim to investigate the whole family, including the father and the siblings, are also necessary.

Predicting caregiver burden in general veterinary clients: Contribution of companion animal clinical signs and problem behaviors

Caregiver burden, found in many clients with a chronically or terminally ill companion animal, has been linked to poorer psychosocial function in the client and greater utilization of non-billable veterinary services. To reduce client caregiver burden, its determinants must first be identified. This study examined if companion animal clinical signs and problem behaviors predict veterinary client burden within broader client- and patient-based risk factor models. Data were collected in two phases. Phase 1 included 238 companion animal owners, including those with a sick companion animal (n=119) and matched healthy controls (n=119) recruited online. Phase 2 was comprised of 602 small animal general veterinary hospital clients (n=95 with a sick dog or cat). Participants completed cross-sectional online assessments of caregiver burden, psychosocial resources (social support, active coping, self-mastery), and an item pool of companion animal clinical signs and problem behaviors.Several signs/behaviors correlated with burden, most prominently: weakness, appearing sad/depressed or anxious, appearing to have pain/discomfort, change in personality, frequent urination, and excessive sleeping/lethargy. Within patient-based risk factors, caregiver burden was predicted by frequency of the companion animal’s signs/behaviors (P<.01). Within client-based factors, potentially modifiable factors of client reaction to the animal’s signs/behaviors (P=.01), and client sense of control (P<.04) predicted burden. Understanding burden may enhance veterinarian-client communication, and is important due to potential downstream effects of client burden, such as higher workload for the veterinarian. Supporting the client’s sense of control may help alleviate burden when amelioration of the companion animal’s presentation is not feasible.

Poster Number: EI 5 - Finding Fault: Criticism as A Care Management Strategy and Its Impact on Outcomes for Dementia Caregivers

BACKGROUND Despite a large literature on the stress process, little attention has focused on how caregivers for persons living with dementia (PLWDs) provide care and how this may impact care outcomes. Criticism is a management strategy caregivers may use to respond to behavioral symptoms. We consider whether criticism is associated with caregivers' mental health and service utilization. METHODS Data are drawn from the Advancing Caregiver Training intervention study including 256 informal caregivers living with a PLWD. In multiple linear regressions controlling for caregivers' demographics and PLWDs' clinical factors, we consider criticism (criticism subscale of the Dementia Management Strategies Scale) as a predictor of caregiver burden, depressive symptoms, desire to institutionalize the PLWD, level of frustration with care, and the number of home-based, social, and health services utilized. RESULTS On average, 15% of the sample sometimes reported using criticism as a management strategy to manage the challenges of care. Greater use of criticism was associated with significantly more caregiver burden (β = 0.26, P < 0.001) and frustration with caregiving (β = 0.66, P < 0.001), but not depressive symptoms or a desire to institutionalize the PLWD. Criticism was also associated with significantly greater utilization of home-based (β = 0.14, P < 0.05) and social services (β = 0.15, P < 0.05), but not health care services. CONCLUSION Criticism appears to be used by more burdened and frustrated caregivers. The association of criticism with social and home-based services potentially reflects a need for greater support among this group of caregivers. Behavioral interventions that can help caregivers manage behavioral symptoms with positive, empirically validated strategies may be helpful.

Longitudinal predictors of caregiver burden in amyotrophic lateral sclerosis: a population-based cohort of patient-caregiver dyads.

Caregiver burden is a recognised consequence of caring for a patient with neurodegeneration. Amyotrophic lateral sclerosis (ALS) differs from other neurodegenerations by its rapid progression and impairment of motor, cognitive, and behavioural function, which contribute to caregiver burden. However, longitudinal factors that determine the extent of caregiver burden, and in particular the impact of psychological distress among caregivers, have not been fully established. Patients with ALS (n=85) and their primary caregivers (n=85) completed three serial evaluations. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Anxiety and depression were evaluated using the Hospital Anxiety and Depression Scale (HADS). The Edinburgh Cognitive-Behavioural ALS Screen (ECAS) was used to determine cognitive function in patients. The ALS Functional Rating Scale (ALSFRS-R) measured disease progression. Using the ZBI, caregivers were categorised as high or low burden. In the low burden group, anxiety scores from the HADS predicted caregiver burden (r=0.410, F=3.73, p=0.033), whereas the depression sub-score from the HADS was predictive of caregiver burden in the high burden group (r=0.501, F=5.87, p=0.006) for cross-sectional analyses. Longitudinally, an elevated score on the HADS at Time 1 was the largest predictor of caregiver burden across serial assessments. In a patient cohort with relatively preserved cognitive function (65%), anxiety and depression at Time 1, as measured by the HADS, were the best predictors of caregiver burden at Time 3. This observation provides a mechanism by which caregiver burden can be identified by health-care professionals and a stepped care programme of intervention initiated.