The term caregiver is used broadly today. It may refer to paid care for a chronically-ill or disabled family member or family members providing daily assistance to an elderly parent.
I am acutely aware of the stress of being a caregiver. I am actually a long distance caregiver, just a phone call away for my sister who is my mother’s primary caregiver. I am not dealing with the difficult day-to-day. All I can do is listen…I listen a lot. Allow her to blow off steam and remind her to BREATHE. I may be far away, but I do try and provide emotional support – it can be very stressful taking care of another individual.
For people living with essential tremor, the ability to perform daily tasks is a struggle. Family or friends may be called on to help with eating and dressing or writing checks. This loss of independence can have a toll on a person’s sense of dignity as well as their social interactions, but what about the toll on caregivers? How do family members and friends cope with their role as caregiver?
Studies across other diseases have shown that caregivers are overwhelmingly stressed, burned out, isolated, and in some cases, depressed. A new article, The Experience of Essential Tremor Caregivers: Burden and its correlates, in Frontiers in Neurology (August 2017), presents the first research on the burden of essential tremor (ET) caregivers. The study included 55 participants and their caregivers with a majority of the caregivers (92.7%) family members with most a child (29.1%) or spouse (56.4%) of the participants.
Results of the research showed that caregivers most commonly provided assistance with writing and cooking. Increased burden felt by the caregivers was associated with the ET participants’ decreased cognition, more falls per year, more medications, more caregiving tasks, more hours per week of caregiving, a longer duration of care and more depressive symptoms in both the ET participant and the caregiver. In answering the ET-specific burden questions, caregivers are overwhelmingly concerned about the future, which in turn evokes high levels of stress:
76% of caregivers reported “feeling concern about how (their) loved one’s tremor will progress over time.”
There seems to be a point, a tipping point, when a patient or their spouse or other family member says, “Enough!”and surgical intervention may become a legitimate topic of discussion. And while that point is different for every person, research in a Frost & Sullivan company-commissioned report (2017) showed that the major trigger for deciding to have treatment is frequent problems with eating and drinking, getting dressed and feeling embarrassed in social interactions.
When it comes to health, patients consult with their physicians, but in the end, the patient (and their caregiver) needs to come to an informed decision on a preferred treatment. The Frost & Sullivan company-commissioned report (2017) showed that while for most patients the primary source of information was the physician (neurosurgeon / neurologist), out of 88 essential tremor patients who have had a surgical intervention, 52% also consulted with their spouse, 25% with their children, 10.2% consulted with their close friends and only 3.4% came to the decision without consulting their loved ones.
Caregivers and family play a significant role in ET patient lives not only in providing support with the day to day, but also in the decision making process of choosing to have a surgical intervention.
We invite you to listen to Gregg’s journey back to work and how his wife, Kathy, researched and found out about the MR-guided focused ultrasound treatment for essential tremor.
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