Strengthening the relationship between direct care workers and family caregivers is essential for providing high-quality, coordinated care to people who need it. When direct care workers and family caregivers work well together, they can provide more comprehensive care, reduce stress and hardship, and make care more sustainable for all involved.
For example, a direct care worker can help a family caregiver learn how to safely transfer their loved one from a bed to a wheelchair. A family caregiver can help a direct care worker understand their loved one’s communication style and preferences. A direct care worker can provide respite care for a family caregiver so that they can take a break. A family caregiver can help a direct care worker plan and implement activities that are meaningful to their loved one.
In addition, fostering synergy between direct care workers and family caregivers can lead to other benefits, such as reduced costs of care, increased access to care, improved outcomes for people receiving care, increased job satisfaction for direct care workers, and reduced turnover of direct care workers.
The need for strengthening these connections has never been stronger.
A Critical Relationship Between Caregivers
Advocates have drawn attention to the challenges facing direct care workers and family caregivers for decades but often as distinct entities.
For example, direct care workers—which include 4.8 million home care workers, residential care aides, and nursing assistants across various settings—often struggle in jobs characterized by poverty-level compensation, inadequate training, limited advancement opportunities, and a general lack of respect and recognition.
These hardships make recruiting and retaining workers extremely challenging, and the problem will only worsen in the years ahead. According to PHI's research, between 2021 and 2031, long-term care employers will need to fill 9.3 million direct care job openings, including 1 million new jobs and job vacancies created as existing workers leave the field or exit the labor force.
And research from the National Alliance for Caregiving (NAC) and AARP finds that between 2015 and 2020 the number of unpaid family caregivers increased by 10 million, reaching 53 million. According to NAC and AARP’s data, approximately 40% of family caregivers are in high-intensity care situations and a third have trouble coordinating care for their loved ones.
'These caregivers together form the common thread that weaves through the fabric of our long-term care system.’
Unfortunately, policymakers and industry leaders have paid considerably less attention to strengthening the relationship between direct care workers and family caregivers, which is critical to delivering high-quality, person-centered care in partnership with the people they support. Also, many direct care workers are family caregivers, and many family caregivers serve as direct care workers (i.e., “independent providers”) through consumer-directed programs that compensate their caregiving—two realities that also merit reforms.
Our new collaborative effort aims to address these profound needs by centering this caregiver dyad in policy and practice-related conversations.
A Groundbreaking Initiative for Caregivers
PHI and NAC have joined forces to launch The Direct Care Worker and Family Caregiver Initiative. Generously funded by The John A. Hartford Foundation, this multiyear effort will draw attention to the policy barriers, research needs and workforce interventions that can elevate the bond between these caregivers, creating a more sustainable long-term care system.
A theme within this initiative is that these caregivers together form the common thread that weaves through the fabric of our long-term care system. They often are the primary support for millions of older adults and people with disabilities in their private homes and across congregate care settings such as assisted living environments and nursing homes.
In this context, studies and real-life experiences demonstrate that strong, mutually beneficial bonds between paid and unpaid caregivers lead to positive care and employment outcomes. In contrast, when the relationship is strained due to poor coordination, miscommunication, and conflicts, everyone involved suffers the consequences.
The first stage of this initiative focuses on federal and state policies across four areas recently detailed by a national gathering of experts. These areas include policies to enhance the integration of direct care workers and family caregivers into care teams, expand consumer-directed programs, strengthen matching service registries connecting consumers and workers in specific regions, and provide additional funding for research on caregiver relationships.
Our organizations co-launched this initiative on Oct. 25 at NAC's Caregiver Nation Summit in Washington, DC. In a room brimming with policy leaders from across the country and the federal government, we shared our ambitious vision, which was extraordinarily well-received. Everyone agreed the time is now to transform how our government supports caregivers—and how caregivers support one another.
Next Steps
To build on this work, PHI and NAC will issue a policy brief and host a Hill Day in the Spring of 2024 to disseminate recommendations and educate the policy field about opportunities to invest in the relationship between direct care workers and family caregivers.
But we’ve only just begun. We will all need to educate and mobilize our communities to build this essential bridge between two caregiver populations that are often overlooked and under-supported.
Learn more about The Direct Care Worker and Family Caregiver Initiative at TogetherInCare.org.
Robert Espinoza is the executive vice president of Policy at PHI, where he directs a national policy advocacy and public education program focused on the direct care workforce, and a nonresident senior fellow with Brookings Institution. He also is chair elect on ASA’s board of directors. Jason Resendez is president and CEO of the National Alliance for Caregiving and was named one of America’s top leaders in healthcare by STAT News.
