Beyond the Care: The Mental Toll of Cachexia on Caregivers
Cachexia, a severe weight loss and muscle wasting syndrome, exacts a heavy toll on patients. But there’s another group that suffers from cachexia in silence: caregivers.
Cachexia patients often lose their ability to take care of themselves, requiring help with day-to-day activities. That imposes a significant burden on those who provide care, often family members who must take time off work or other obligations.
Cachexia often develops in patients with chronic diseases such as cancer, heart failure and advanced HIV/AIDS. While this condition can cause emotional, physiological and sociological distress for the patient, it can have the same impact on their caregivers.
The exact number of caregivers for those who suffer from cachexia is hard to come by. We know that roughly one in five U.S. adults care for a loved one who suffers from a chronic disease or a disability. Almost half of these caregivers experience an increase in anxiety, depression or other mental health issues.
Cachexia diminishes appetite, leading to frailty and anorexia, creating a proxy effect on caregivers. Society often equates a person’s well-being with their weight, particularly when illness is involved. This perspective places an emotional and physiological burden on caregivers, who constantly worry about being judged for their caregiving abilities without a full understanding of the complexities of this wasting syndrome. This is particularly heartbreaking and impactful for parents of children with failure to thrive due to chronic disease, where the desire to nurture combines with societal judgement to create a potent drive toward feelings of helplessness and isolation.
The sociological impact on caregivers can be profound and multifaceted, affecting their mental health and family dynamics. Cachexia, a stigmatized condition, often leads to isolation and loneliness, leaving caregivers without a solid support system.
As a young adult, witnessing firsthand the physical and mental toll cachexia took on a close friend and his caregivers inspired me to focus my career on finding a cure. As our research advances, I’m excited about the prospect of bringing relief not just to patients, but those who care for them.
No effective treatment for cachexia currently exists. If it did, we would be able to help millions of patients, along with the people who care for them. This is always in my thoughts as our team at Endevica Bio continues to develop a promising drug for the syndrome.
By Dr. Daniel Marks, MD, PhD is Chief Medical and Scientific Officer at Endevica Bio.