TY - JOUR
T1 - The experience of essential tremor caregivers
T2 - Burden and its correlates
AU - Morgan, Sarah
AU - Kellner, Sarah
AU - Gutierrez, Jesus
AU - Collins, Kathleen
AU - Rohl, Brittany
AU - Migliore, Fanny
AU - Cosentino, Stephanie
AU - Huey, Edward D.
AU - Louis, Elan D.
AU - Monin, Joan K.
N1 - Funding Information:
EL has received research support from the National Institutes of Health: NINDS R01 NS042859 (principal investigator), NINDS R01 NS39422 (principal investigator), NINDS R01 NS086736 (principal investigator), NINDS R01 NS073872 (principal investigator), NINDS R01 NS085136 (principal investigator), and NINDS R01 NS088257 (principal investigator). National Institutes of Health: NINDS R01NS086736. This funding body played no role in the design of the study, the collection, analysis, and interpretation of data, or the writing of the manuscript.
Publisher Copyright:
© 2017 Morgan, Kellner, Gutierrez, Collins, Rohl, Migliore, Cosentino, Huey, Louis and Monin.
PY - 2017/8/14
Y1 - 2017/8/14
N2 - Background: 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. Methods: 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. results: 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.conclusion: 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.
AB - Background: 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. Methods: 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. results: 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.conclusion: 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.
KW - Caregiver burden
KW - Clinical
KW - Cognition
KW - Essential tremor
KW - Suffering
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UR - http://www.scopus.com/inward/citedby.url?scp=85027418867&partnerID=8YFLogxK
U2 - 10.3389/fneur.2017.00396
DO - 10.3389/fneur.2017.00396
M3 - Article
C2 - 28855888
AN - SCOPUS:85027418867
SN - 1664-2295
VL - 8
JO - Frontiers in Neurology
JF - Frontiers in Neurology
IS - AUG
M1 - 396
ER -