TY - JOUR
T1 - Enfeeblement in elders with essential tremor
T2 - Characterizing the phenomenon and its role in caregiver burden
AU - Cersonsky, Tess E.K.
AU - Diaz, Daniel Trujillo
AU - Kellner, Sarah
AU - Hickman, Ruby
AU - Zdrodowska, Maria Anna
AU - Monin, Joan K.
AU - Louis, Elan D.
N1 - Funding Information:
*To whom correspondence should be addressed. E-mail:elan.louis@yale.edu Editor: Ruth Helen Walker, Mount Sinai School of Medicine, USA Received: June 17, 2019; Accepted: September 12, 2019; Published: October 18, 2019 Copyright: © 2019 Cersonsky et al. This is an open-access article distributed under the terms of the Creative Commons Attribution–Noncommercial–No Derivatives License, which permits the user to copy, distribute, and transmit the work provided that the original authors and source are credited; that no commercial use is made of the work; and that the work is not altered or transformed. Funding: None. Financial Disclosures: This work was supported by the National Institutes of Health (grant no. NINDSR01NS086736), which played no role in the design of the study; the collection, analysis, and interpretation of data; or the writing of the manuscript. No authors have reported any competing financial interests. Conflicts of Interest: The authors report no conflicts of interest. Ethics Statement: This study was performed in accordance with the ethical standards detailed in the Declaration of Helsinki. The authors’ institutional ethics committee has approved this study and all patients have provided written informed consent.
Publisher Copyright:
© 2019 Cersonsky et al.
PY - 2019/10/18
Y1 - 2019/10/18
N2 - 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.
AB - 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.
KW - Caregiver burden
KW - Cognition
KW - Embarrassment
KW - Enfeeblement
KW - Essential tremor
KW - Movement disorders
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U2 - 10.7916/tohm.v0.687
DO - 10.7916/tohm.v0.687
M3 - Article
C2 - 31709127
AN - SCOPUS:85074741821
SN - 2160-8288
VL - 9
SP - 1
EP - 8
JO - Tremor and Other Hyperkinetic Movements
JF - Tremor and Other Hyperkinetic Movements
ER -