Strengthening California’s Caregiver Network: Insights from Caregivers

The California Department of Aging (CDA), California’s federally designated State Unit on Aging (SUA), operates under the California Health and Human Services Agency and administers programs serving older adults, people with disabilities, and caregivers. The department oversees Area Agencies on Aging, contracts with Multipurpose Senior Services Program agencies and Caregiver Resource Centers, certifies Adult Day Health Care Centers, and administers a Long-Term Care Ombudsman program that oversees licensed facilities statewide. CDA collaborates with multiple state departments to advance its mission through comprehensive service delivery and strategic partnerships.

• Engaged caregivers, healthcare providers, and home- and community-based services (HCBS) organizations across Imperial, Marin, and Sonoma Counties.
• Mapped the formal and informal pathways caregivers use to find information, referrals, and support.
• Identified key barriers to navigation, including outdated resource information, limited warm handoffs, provider capacity constraints, and delayed identification of caregivers.
• Identified opportunities to strengthen connections between healthcare, HCBS, and informal caregiver networks.
• Increased CDA decision-makers’ understanding of referral and navigation patterns, caregiver navigation experiences, and local readiness to implement No Wrong Door (NWD) approaches.

CDA engaged Collaborative Consulting to examine how caregivers navigate California’s caregiver support system and identify opportunities to make it easier for caregivers to find and access the help they need. Our research aimed to:

• Gain insight into how caregivers gather information, receive referrals, and access support.
• Identify the barriers caregivers and providers encounter when navigating services.
• Examine how healthcare and HCBS organizations connect caregivers to resources.
• Translate caregiver and provider experiences into practical strategies for strengthening navigation and coordination.

To understand how to improve caregiver navigation, we examined the system from the perspectives of both caregivers and the organizations supporting them. We designed and facilitated interviews and listening sessions across Imperial, Marin, and Sonoma Counties with caregivers and providers from healthcare and HCBS organizations. We explored how caregivers find help, which sources they trust, where referrals break down, and what makes services easier or harder to access. We learned that caregivers utilize a combination of formal and informal sources, including healthcare and HCBS providers, family and friends, peer support groups, online communities, and AI-powered search tools.

We also learned that one of the primary challenges facing caregivers is not a lack of resources, but limited access to and coordination of existing resources. Caregivers often receive resource lists rather than coordinated connections to services. At the same time, healthcare providers have limited capacity to identify caregivers and maintain knowledge of local resources, while HCBS organizations face challenges with staffing, funding, and referral capacity. Informal caregiver networks fill these gaps by providing trusted, real-world guidance. Some of the actionable opportunities include:

• Improve caregiver identification through more proactive screening and awareness.
• Strengthen referral pathways through more coordinated referrals and warm handoffs.
• Strengthen HCBS capacity to maintain current information and respond effectively to referrals.
• Connect formal and informal networks so caregivers can benefit from trusted community guidance while accessing formal services and supports.

We synthesized the learning and opportunities into recommendations that can inform CDA’s continued work through CalCARES and strengthen California’s caregiver support infrastructure.