By Rebecca Smith

An estimated 53 million people are providing unpaid care to family members in the United States, and a new report from AARP estimates the economic value of that care to be $600 billion. 

During this session, Kat McGowan shared her personal experience with family caretaking, which she called “the hardest thing I have ever done.” 

“We treat caregiving like a family concern, or like a private misfortune instead of what it is, which is a huge social and public policy issue that integrates with all of the things that reporters care about — labor issues, employment, health, equity, economic justice, the cost of care, feminism, it goes on and on,” she said. 

“A key part of our health care system is essentially a shadow workforce of family caregivers that keep the system from seizing up completely.” 

Panelist Rey Castuciano, who is a Filipino immigrant and a caregiver to his parents, said that “as a caregiver, I cannot afford to be sick.” 

Castuciano moved to St. Louis from Southern California in 2013 when his parents asked him to move back, and just a few months later his dad had a stroke. He got involved in support groups through the hospital, but he did not look like the traditional caregiver, which tends to be older, white and female.

While he does not live with his parents, Castuciano said that he spends 30 to 35 hours a week assisting his parents with “daily living” — tasks like preparing meals, driving his dad to appointments, and keeping his parents socially connected.

Julia Yarbough said she spent 20 years taking care of her mother and lived with her for five years lbefore her death. She encouraged journalists to tell stories of caregiving that engage and highlight the real faces of caregiving.

“There are so many of us out there that when people can see that real face, those real human daily activities, and not just the stats, not just the numbers, they can start to understand that this caregiving journey isn't like the commercials where you see people sitting there playing checkers or going for a walk in the park. It's real,” Yarbough noted

She said that this issue is incredibly important as everyone will be impacted — either by being a caregiver now, being a caregiver in the future, or being cared for — and her blog/substack is about helping people prepare for that inevitable future. 

“At any point, any one of us could have an accident and end up in a situation where we need somebody to help take care of us,” Yarbough said.

Jennifer Olsen spoke about how there were 53 million caregivers before the COVID-19 pandemic and that she expects the number is even higher now. She asked those gathered if a doctor had ever asked them if they cared for someone — much as they might be asked about tobacco or drinking habits. 

She also addressed some of the challenges caregivers face —among them,  limited access to advocates Olsen also told attendees that caregiving is still seen as a subissue to aging or disease or disability.

Story ideas:

• AARP’s CARE (Caregiver Advise, Record, Enable) Act — by state here
• Anti-discrimination efforts in several states
• Consideration of unemployment benefits for family caregivers 

Rebecca Smith is a health reporter and producer at KBIA, the local public radio station in Columbia, Mo. She was a 2023 AHCJ-Missouri Health Journalism Fellow.