Perceived embarrassment and caregiver burden in essential tremor caregivers.
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ABSTRACT:
SUBMITTER: Kellner S
PROVIDER: S-EPMC5739080 | biostudies-other | 2017 Dec
REPOSITORIES: biostudies-other
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Project description:Essential tremor (ET) is associated with physical and cognitive impairments, as well as embarrassment, avoidance of social settings, and related difficulties that negatively impact the lives of patients. In similar disease contexts, burden on friends and relatives acting as caregivers has been noted and has well-documented implications. There has been no study examining caregiver burden related to ET.Data were gathered from 55 ET participants enrolled in a clinical study and their caregivers. The Zarit Burden Interview was used to assess caregiver burden. To assess clinical features that may be associated with burden, we collected several variables including the Montreal Cognitive Assessment, self-reported tremor disability, a videotaped neurological examination, questionnaires assessing ET participants' suffering, caregivers' perceptions of that suffering, and both caregiver and ET participant depressive symptoms. Spearman's correlations were performed between caregiver burden and clinical features, and we created a multivariate linear regression model predicting caregiver burden.Many ET caregivers provide little to no care and experience little to no burden. However, some caregivers (11%) provide over 25 h of care/week, and 13% experience high levels of burden. Caregivers most commonly provided assistance with writing and cooking. Increased burden was associated with the ET participants' decreased cognition, more caregiving tasks, more hours/week of caregiving activities, a longer duration of care, more ET participant falls/year, more medications taken by the ET participant, and more depressive symptoms in both the ET participant and the caregiver (all p < 0.05). ET participants' suffering and their caregivers' perceptions of suffering were both associated with increased burden. Neither tremor severity score nor self-reported tremor disability score was associated with increased caregiver burden. Using a multivariate linear regression model, we found that caregivers' increased perception of their partners' suffering was the best predictor of caregiver burden.While not all relatives and friends of ET patients provide extensive care or experience high burden, there is a group reporting high levels of caregiver burden that requires the attention and counseling of clinicians. This burden is associated with primarily non-tremor symptoms of ET and with caregivers' perception that their partners are suffering.
| S-EPMC5557742 | biostudies-other
Project description:Background:Individuals with essential tremor (ET), a common movement disorder, experience functional impairment, which contributes to burden experienced by their loved ones and caregivers. Some burdened caregivers report their loved ones as seeming debilitated or prematurely old, a concept that we have called enfeeblement. Using the Essential Tremor Enfeeblement Survey (ETES), we seek to characterize enfeeblement in elders with ET and assess its contribution to caregiver burden. Methods:We administered the ETES (range = 8-40, higher scores indicating more enfeeblement) and other scales to 98 caregivers of individuals with ET. Individuals with ET were also queried regarding tremors, cognitive abilities, and overall health. We then identified demographic and clinical correlates of ETES and modeled the contribution of ETES to caregiver burden (assessed using the Zarit 12-item Burden Interview [ZBI-12]). Results:Mean ETES score was 14.2 ± 6.2 (median = 12.0, range = 8.0-32.0); 26.5% of respondents endorsed at least one of the eight ETES items. Older age, greater tremor severity and disability, more functional and gait disability, more cognitive difficulty, and more depressive symptoms were associated with higher ETES scores. ETES was the strongest contributor to caregiver burden (ZBI-12) and substantially increased the variance explained in models of caregiver burden. Discussion:Enfeeblement seems to describe a previously unexplained component of caregiver burden in elders with ET. The presence of enfeeblement may contribute to greater burden and should be factored into assessments of patient and caregiver needs.
| S-EPMC6814912 | biostudies-literature
Project description:BackgroundCoping strategies play a key role in modulating the physical and psychological burden on caregivers of stroke patients. The present study aimed to determine the relationship between the severity of burden of care and coping strategies amongst a sample of Iranian caregivers of older stroke patients. It also aimed to examine the differences of coping strategies used by male and female caregivers.MethodsA total of 110 caregivers of older patients who previously had a stroke participated in this descriptive and cross-sectional study. The Zarit Burden Interview and Lazarus coping strategies questionnaires were used for data collection. Questionnaires were completed by the caregivers, who were selected using convenience sampling. The collected data were analyzed using Pearson's correlations and independent t-tests.ResultsThe mean age of participants was 32.09 ± 8.70 years. The majority of the caregivers sampled reported mild to moderate (n = 74, 67.3%) burden. The most commonly used coping strategies reported were positive reappraisal and seeking social support. Results of the independent t-test showed that male caregivers used the positive reappraisal strategy (t(110) = 2.76; p = 0.007) and accepting responsibility (t(110) = 2.26; p = 0.026) significantly more than female caregivers. Pearson's correlations showed a significant positive correlation between caregiver burden and emotional-focused strategies, including escaping (r = 0.245, p = 0.010) and distancing (r = 0.204, p = 0.032).ConclusionsCaregivers with higher burden of care used more negative coping strategies, such as escape-avoidance and distancing. In order to encourage caregivers to utilize effective coping skills, appropriate programs should be designed and implemented to support caregivers. Use of effective coping skills to reduce the level of personal burden can improve caregiver physical health and psychological well-being.
| S-EPMC8017750 | biostudies-literature
Project description:There is increasing evidence that subjective caregiver burden is an important determinant of clinically significant anxiety in family carers. This meta-analysis aims to synthesise this evidence and investigate the relationship between subjective caregiver burden and anxiety symptoms in informal caregivers. We searched PubMed, CINAHL and PsycINFO up to January 2020. Combined estimates were obtained using a random-effects model. After screening of 4,312 articles, 74 studies (with 75 independent samples) were included. There was a large, positive association between subjective caregiver burden and anxiety symptoms (r = 0.51; 95% CI = 0.47, 0.54; I2 = 0.0%). No differences were found in subgroup analyses by type of study design (cross-sectional vs. longitudinal), sampling, control of confounders or care-recipient characteristics. Subjective caregiver burden is an important risk factor for anxiety in informal caregivers. Targeting subjective caregiver burden could be beneficial in preventing clinically significant anxiety for the increasing number of family carers worldwide.
| S-EPMC7920375 | biostudies-literature
Project description:BackgroundPatients with essential tremor (ET) have an increased risk of cognitive impairment, yet little is known about the predictors of cognitive decline in these patients. Exposures to infectious agents throughout the lifespan may impact the later development of cognitive impairment. For example, high Infection exposure has been associated with lower cognitive performance in Alzheimer's and Parkinson's disease. However, this predictor has not been examined in ET.ObjectivesTo determine whether a higher baseline infection burden is associated with worse cognitive performance at baseline and greater cognitive decline over time in an ET cohort.Method/design160 elderly non-demented ET participants (80.0 ± 9.5 years) underwent an extensive cognitive evaluation at three time points. At baseline, participants completed an infection burden questionnaire (t-IBQ) that elicited information on previous exposure to infectious agents and number of episodes per disease. Analysis of covariance and generalized estimated equations (GEEs) were used.ResultsOverall, infection burden was not associated baseline cognitive performance. Adjusted GEE models for repeated measures yielded a significant time interaction between moderate infection burden at baseline and better performance in the attention domain over time (p = 0.013). Previous history of rubella was associated with faster rate of decline in visuospatial performance (p = 0.046).ConclusionThe data were mixed. Moderate self-reported infection burden was associated with better attention performance over time. Self-reported history of rubella infection was related to lower visuospatial performance over time in this cohort. Follow-up studies with additional design elements would be of value.
| S-EPMC8121006 | biostudies-literature
Project description:Little is known about the burden of cross-cultural care for stroke patients. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (using the Sense of Competence Questionnaire) and social support (using the ENRICHD Social Support Inventory) also were measured. The overall-sense-of-burden-from-caregiving score was significantly higher in the Korean cohort than in the American cohort, as was the scale regarding satisfaction with the relationship with the recipient of care. The primary predictors of overall burden for the combined sample were caregiver and patient depression and insufficient social support. Lower perceived social support among Korean caregivers was strongly related to caregiver depression, while it was more strongly related to increased hours of caregiving in the American sample. These findings can help rehabilitation nurses plan supportive interventions that incorporate cultural values for stroke survivors and their caregivers.
| S-EPMC2821598 | biostudies-literature
Project description:To determine whether caregiver burdens are associated with lifestyle behaviors 1 year following the hospitalization of a family member with cardiovascular disease (CVD).Prospective follow-up study of National Heart Lung and Blood Institute sponsored Family Intervention Trial for Heart Health participants.Hospital-based recruitment/baseline visit with 1-year follow-up.Family members of hospitalized CVD patients (N ?=? 423; 67% female; 36% racial/ethnic minority; mean age 49 years).Systematic evaluation at 1 year to determine heart-healthy diet (defined as <10% kcal from saturated fat; Block 98 Food Frequency Questionnaire) and physical activity (defined as ?4 d/wk; Behavioral Risk Factor Surveillance System Survey) behaviors and caregiver burdens (five domains: employment, financial, physical, social, and time; Caregiver Strain Questionnaire).Logistic regression adjusted for covariates.Heart-healthy diet was less frequent among caregivers citing feeling overwhelmed (odds ratio [OR] ?=? .50; 95% confidence interval [CI] ?=? .26-.97), sleep disturbance (OR ?=? .51; 95% CI ?=? .27-.96), financial strain (OR ?=? .41; 95% CI ?=? .20-.86), upsetting behavior (OR ?=? .48; 95% CI ?=? .25-.92), and/or time demands (OR ?=? .47; 95% CI ?=? .26-.85) as burdens. Physical activity was less frequent among caregivers reporting financial strain (OR ?=? .32; 95% CI ?=? .13-.81) or upsetting patient behavior (OR ?=? .33; 95% CI ?=? .15-.76) as burdens. The most commonly cited caregiver burdens included changes in personal plans (39%), time demands (38%), and sleep disturbance (30%).Caregiver burdens were associated with nonachievement of heart-healthy diet and physical activity behaviors among family caregivers 1 year after patient discharge. When developing heart-health promotion interventions, caregiver burden should be considered as a possible barrier to prevention among family members of CVD patients.
| S-EPMC4041363 | biostudies-literature
Project description:Patients receiving hemodialysis often perceive their caregivers are overburdened. We hypothesize that increasing hemodialysis frequency would result in higher patient perceptions of burden on their unpaid caregivers.In two separate trials, 245 patients were randomized to receive in-center daily hemodialysis (6 days/week) or conventional hemodialysis (3 days/week) while 87 patients were randomized to receive home nocturnal hemodialysis (6 nights/week) or home conventional hemodialysis for 12 months. Changes in overall mean scores over time in the 10-question Cousineau perceived burden scale were compared.In total, 173 of 245 (70%) and 80 of 87 (92%) randomized patients in the Daily and Nocturnal Trials, respectively, reported having an unpaid caregiver at baseline or during follow-up. Relative to in-center conventional dialysis, the 12-month change in mean perceived burden score with in-center daily hemodialysis was -2.1 (95% confidence interval, -9.4 to +5.3; P=0.58). Relative to home conventional dialysis, the 12-month change in mean perceived burden score with home nocturnal dialysis was +6.1 (95% confidence interval, -0.8 to +13.1; P=0.08). After multiple imputation for missing data in the Nocturnal Trial, the relative difference between home nocturnal and home conventional hemodialysis was +9.4 (95% confidence interval, +0.55 to +18.3; P=0.04). In the Nocturnal Trial, changes in perceived burden were inversely correlated with adherence to dialysis treatments (Pearson r=-0.35; P=0.02).Relative to conventional hemodialysis, in-center daily hemodialysis did not result in higher perceptions of caregiver burden. There was a trend to higher perceived caregiver burden among patients randomized to home nocturnal hemodialysis. These findings may have implications for the adoption of and adherence to frequent nocturnal hemodialysis.
| S-EPMC4011443 | biostudies-literature
Project description:Essential tremor (ET) patients develop more cognitive impairment and dementia than controls, although there are surprisingly few data on the neuropathological basis for cognitive changes in ET. In this postmortem study, we assessed tau and other pathologies in 26 ET cases and 73 controls (non-ET) (1:3 matching). The mean age = 88.6 years; 55% were cognitively normal, 24% had mild cognitive impairment (MCI), and 20% had dementia. We found similar burdens of pathology using Braak, ?-amyloid and Lewy body assessments in ET and controls. In contrast, among cognitively normal subjects, ET cases had a higher number of NFT-positive neurons in the neocortex than controls (p < 0.001); the number of NFT-positive neurons in the medial temporal lobe was similar in these 2 groups (p = 0.22). Among subjects with MCI, ET cases also had higher numbers of NFT-positive neurons in the neocortex than controls (p < 0.001) but again, not in the medial temporal lobe (p = 0.55). Among subjects with dementia, the number of NFT-positive neurons was similar in ET cases and controls. Cognitive function correlated with quantitative neurofibrillary tangle counts in ET cases and controls. In the context of ET, pre-dementia tau burden is higher than in the absence of ET, suggesting a predisposition to tau pathology.
| S-EPMC6289218 | biostudies-literature
Project description:BACKGROUND:The burden of mild (i.e., subclinical) tremor within essential tremor (ET) families is not fully understood. We assessed the burden of mild tremor in a cohort of 287 adults, none of whom reported tremor or were diagnosed with ET. METHODS:We recruited adults in 2 groups based on the familial risk for ET: 244 high-risk individuals (i.e., reporting one or more first-degree relative with ET) and 43 low-risk individuals (i.e., reporting no relatives with ET). Tremor was objectively assessed on 4 hand-drawn spirals (total spiral score = 0-12). Mild tremor was defined using 3 different cut points. RESULTS:The prevalence rates of mild tremor among high-risk individuals ranged from 41.4 to 98.4% and were highly dependent on the cut point. Above a certain threshold (i.e., a total spiral score ?5), 1-in-5 (i.e., 19.7%) high-risk individuals exhibited mild tremor, whereas no low-risk individuals did. High-risk individuals were 3.09-4.50 times more likely than low-risk individuals to exhibit mild tremor. CONCLUSION:The burden of ET extends beyond the boundaries of the clinically defined disease, and partially expressed forms of ET are abundant in ET families. This fact greatly complicates gene-finding studies and epidemiological studies whose goal is to detect disease-linked associations.
| S-EPMC5860954 | biostudies-literature