Amyotrophic lateral sclerosis (ALS) impacts greatly not only those who have the disease, but also family caregivers who provide the majority of care for their loved ones throughout the ALS disease trajectory. In the provision of this care, these family caregivers frequently experience significant threats to their own physical and mental health, and thus to their quality of life. The burden of caregiving can be high, distress is not uncommon, and support is needed to best address these issues. Despite the physical and emotional challenges faced by family caregivers, limited research has been directed at this caregiving phenomenon. The more health care providers understand the key elements of the ALS caregiving experience, the better equipped they will be to recognize the caregivers as not only co-providers of care, but as potential recipients of care to meet the unique physical and mental challenges of this caregiving population.
Caregiver Quality of Life: How to Measure It and Why
