Addressing the Gap in Mental, Physical Health Care for Caregivers

The often-overlooked perspective of the caregiver was brought to the forefront of a presentation at the Greater Philadelphia Business Coalition on Health (GPBCH) 2024 Women’s Health Summit held on March 21, 2024, in Philadelphia, Pennsylvania. Julia Cohen Sebastien, cofounder and CEO of Grayce, addressed the plight of caregivers by fostering a discussion on stories and solutions to support those who shoulder the responsibility of caring for loved ones while grappling with their health issues.

Julia Cohen Sebstien

More often than not, it’s women who fall into the role of caregiver, affecting their health outcomes. A quarter of female caregivers are dealing with health problems as a result of their caregiving efforts, Cohen Sebastien explained.

Cohen Sebastien candidly shared her experiences juggling the demands of caring for her aging parents and her child, who was recently diagnosed with a rare condition. She spoke of the physical and emotional toll of caregiving, recounting sleepless nights, missed appointments for her health, and the constant struggle to prioritize her health amid the needs of her family.

Her story resonated with many in the audience, who shared impromptu, yet similar, struggles of balancing caregiving responsibilities with work and personal life. From caring for aging parents undergoing surgeries to supporting children with special needs, the challenges faced by caregivers were diverse and interconnected.

“While there's no data specifically about women and how that translates to their medical costs–across the entire population [of caregivers], the data show that their medical costs are 8% higher,” she said. “So it's a massive opportunity to address medical costs when you think about dealing with 10% plus, medical cost inflation.”

The profound impact of caregiving on both physical and mental health was highlighted by participants recounting prolonged chronic stress, anxiety, and depression in addition to reporting symptoms of perimenopause, autoimmune diseases, and other chronic conditions exacerbated by the stress of caregiving.

Last year, President Joe Biden acknowledged the need to set greater standards and training for expectations of family caregivers, Cohen Sebastien noted. It goes beyond just the medical costs, she continued.

“It's pretty obvious the topic of caregiving addresses health equity, right?” she said. “This is about women having a fair and just opportunity to attain their highest level of health. I mean, none of these statistics point towards achieving any level of equity within that population.”

The presentation continued to shed light on the economic implications of caregiving, with caregivers facing higher medical costs and reduced access to preventive care. Many caregivers reported deferring their own health care needs due to time constraints and financial constraints, leading to delayed diagnoses and exacerbated health issues.

In light of these challenges, the presentation called for a concerted effort to support caregivers and address the systemic barriers they face. Participants proposed various solutions, including workplace initiatives such as caregiver support groups, flexible work arrangements, and subsidized childcare and eldercare services.

Beyond the presentation alone, there was a call for greater awareness and advocacy around the issue of caregiving, both within organizations and in society at large. Recognizing caregiving as a workforce management issue and a public health issue is crucial to driving meaningful change and fostering a culture of support and empathy for caregivers.

The presentation paired with the audience’s participation orchestrated a rallying cry for action, urging stakeholders to prioritize the needs of caregivers and invest in solutions that address the hidden burden and costs of caregiving. Research and awareness only go so far.

“If you do not actually go take something off the caregiver's plate and get them to engage with the support that they need it does not deliver the outcomes that you are seeking,” Cohen Sebastien said.