The Experience of Essential Tremor Caregivers: Burden and Its Correlates

Abstract

BackgroundEssential 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.MethodsData 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.ResultsMany 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.ConclusionWhile 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.

Prospective Home-use Study on Non-invasive Neuromodulation Therapy for Essential Tremor

“…The TETRAS dominant hand scores were further classified consistently with the 0 to 4-point TETRAS scale as either 'No tremor' (total score of 0), 'Slight' (1-6), 'Mild' (7)(8)(9)(10)(11)(12), 'Moderate' (13)(14)(15)(16)(17)(18), or 'Severe' (19)(20)(21)(22)(23)(24). These categories correspond to having an average TETRAS score across the six assessed tasks of 0 ('no tremor'), >0-1 ('Slight'), >1-2 ('Mild'), >2-3 ('Moderate'), and >3-4 ('Severe').…”

“…Upper limbs are affected in virtually all ET patients, and other regions (e.g., head, voice, and lower limbs) are affected in some patients [2,3]. ET can be physically, psychologically, and socially detrimental, and reduce the quality of life for patients [4][5][6][7][8][9]. The mechanisms of ET are not completely understood, but studies comparing neural activity, brain imaging, and electromyography data between ET patients and healthy adults suggest that ET is caused by rhythmic signaling within a central tremor neural network involving the ventral intermediate nucleus (VIM) of the thalamus [10][11][12][13][14][15][16].…”

Psychological Suffering in Essential Tremor: A Study of Patients and Those Who Are Close to Them

“…On average, they provided 5.4 hours of care per week. 26 Data on the demographics of COs, and experiences and perspectives on suffering, were collected during 30-minute telephone interviews conducted by trained research Standard protocol approvals, registrations, and patient consents Upon enrollment, all ET patients provided informed written consent approved by the Institutional Review Boards of Columbia and Yale Universities. All COs enrolled in the study provided verbal consent over the telephone approved by the Institutional Review Board of Yale University.…”

Enfeeblement in Elders with Essential Tremor: Characterizing the Phenomenon and Its Role in Caregiver Burden

“…However, they can require the assistance of relatives and friends who take on caregiving activities and act as caregivers. 24 Patients may rely on such individuals to assist with eating, drinking, and dressing and in performing tasks such as writing checks or completing written forms. 24 In patients with voice tremors, friends and relatives will act as interpreters to assist the patient in being understood.…”