Together in Care: Empowering Direct Care Workers and Family Caregivers for the Future

As our population ages, the demand for long-term care services continues to rise. At the forefront of meeting this growing need are two essential groups: direct care workers and family caregivers. These unsung heroes help millions of older adults, people with disabilities, and individuals with chronic conditions live independently in their homes and communities. They’re also crucial when individuals require care in other settings.

However, despite their invaluable contributions, both direct care workers and family caregivers face significant challenges. Direct care workers often struggle with poor job quality, insufficient training, inadequate compensation, and limited advancement opportunities. Family caregivers, on the other hand, frequently experience isolation, care coordination difficulties, economic hardships, and health risks.

Recognizing these issues, PHI and the National Alliance for Caregiving (NAC) launched the Together in Care® initiative in 2023, with support from The John A. Hartford Foundation. This groundbreaking initiative aims to elevate and empower the critical relationship between direct care workers and family caregivers, ultimately strengthening home and community-based services and increasing access to high-quality, affordable care.

This month, PHI and NAC released an issue brief outlining key recommendations to transform the long-term care landscape. Drawing on insights from direct care workers, family caregivers, and industry experts, the brief identifies four crucial areas for improvement:

Integrating Caregivers into Care Teams

Policymakers, employers, and researchers should work to integrate direct care workers and family caregivers into care teams. These caregivers spend the most time with patients and have crucial knowledge of their needs. However, they’re often excluded from care planning, leading to fragmentation and information gaps. Including them can improve care coordination, health monitoring, and overall quality of care while enhancing outcomes and efficiency.

Expanding Self-Directed Care Programs

States and advocates should expand self-directed care programs, allowing care recipients to manage their own caregivers. These programs can enable family members to become paid caregivers or help hire suitable workers. This approach addresses economic challenges for family caregivers, meets growing demand for direct care workers, and leverages families’ understanding of care needs. States should also consider training family caregivers interested in long-term direct care employment, strengthening the workforce pipeline.

Leveraging Matching Service Registries

Policymakers, practitioners, and payors should fund and develop matching service registries – online platforms connecting direct care workers with consumers and families. These registries allow users to create profiles detailing their skills or needs, facilitating better matches based on experience, preferences, and requirements. Currently available in 12 states, these registries can improve care continuity and outcomes. Expanding their reach, enhancing matching criteria, improving language accessibility, and promoting wider use could significantly increase their impact on the care ecosystem.

Investing in Research and Evaluation

Finally, the brief calls for increased funding for research and evaluation efforts focused on the collaborative relationship between direct care workers and family caregivers. This research can inform evidence-based practices and policies that strengthen person- and family-centered care. While existing research shows promising results, more evidence is needed to support the widespread implementation of effective interventions.

We are all together in care, bound by shared responsibility and shared collective need. The partnership between direct care workers and family caregivers is vital to bringing an effective system of person-and-family-centered care and support to reality. As our work to advance much-needed dialogue moves forward, PHI and NAC welcome your collaboration in empowering direct care workers and family caregivers to support people and families across the country.

To learn more, visit https://www.togetherincare.org/