What do ET Patients’ Caregivers Need?

Essential tremor (ET) can become a physical, emotional and social disability. ET patients whose tremors interfere with daily tasks (eating, dressing, bathing, writing, etc.) must often turn to help from caring family and friends.

While the needs of ET patients are well identified, this is less true for ET caregivers. A new study explored the specific tasks and time commitments that can burden those who tend to the needs of ET patients.i The authors found that when ET patients require significant care, 11% of caregivers invest 25+ hours per week assisting their patients. This is a burdensome commitment of time and energy. While the word “burden” may have a negative association – as if the caregiver is an unwilling slave to the patient, the authors use neutral terms to describe it as “the diminishment of one’s emotional, physical, social, or financial well-being as a result of providing care.”

Most caregivers involved in the study were family members, especially spouses and children. Writing and cooking were the most commonly reported assistive tasks, but as patient need increased, so did the strain on caregivers. This was especially true when a patient also had cognitive decline.

The “invisible” burden

It’s not just about visible duties and tasks. An invisible aspect of a caregiver’s burden is his or her perception of the patient’s suffering. The more the caregiver believes the patient is in great mental and spiritual distress, the more the caregiver feels a heavy load. Patients are also sensitive to how much suffering they believe they are causing the caregiver. In turn this affects each of their moods – and a defeatist or depressed mood adds to the burden for both sides. Ironically, the study found that in general, the caregivers reported that the patients were suffering more than the patients actually saw themselves as suffering, based on questionnaires. In fact, mismatched perception was the greatest predictor of caregiver burden.

What ET caregivers need

The starting point for diminishing caregiver burden is what the authors call “a simple and likely effective way” to ease the situation for caregivers. They need to engage in honest conversations with their patients in order to understand the actual degree of patient suffering. This can ease the caregiver’s mind and thus reduce the burden. This basic first step can then lead to other ways in which patient and caregiver alike can facilitate better meeting of their needs.

Perhaps the best way to lessen caregiver burden is to be able to control the tremor and restore patient qualify of life. Sperling Neurosurgery Associates offers noninvasive MRgFUS to control or eliminate ET.

iMorgan S, Kellner S, Gutierrez J, Collins K, et al.The Experience of Essential Tremor Caregivers: Burden and Its Correlates. Front Neurol. 2017 Aug 14;8:396.

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