Strengthening Family Caregivers Through Connection and Support
At the 2025 ADvancing States HCBS Conference, the Caregiving and Workforce Intensive brought a sharp focus to family caregiving—described by one panelist as “messy,” unpredictable, and deeply personal. While the conference was full of discussions about policies, workforce pipelines, and new federal programs, this session cut straight to the heart of care: how do we better support the millions of family members who carry the invisible weight of caregiving every day?
The answer, as presenters and panelists made clear, is neither simple nor one-size-fits-all. It lies in personalization, repetition, trust, and technology that extends human touch rather than replaces it.
The Messiness of Family Caregiving
Caregiving is not a static role—it changes as health conditions progress, as families reorganize, and as systems shift around them. Panelists emphasized that high need for individualized care plans is the norm, not the exception.
Top needs repeatedly surfaced across studies and lived experience:
Training on managing a care recipient’s health (especially dementia and behavioral symptoms).
Support for the caregiver’s own self-care—a need often ignored until crisis hits.
Guidance on safety and living arrangements as conditions change.
Meeting these needs requires more than pamphlets or a single training session. It calls for tailored interventions, continuous reinforcement, and tools that evolve with the caregiver’s journey.
Tailored Interventions: From Segmentation to Personalization
One theme threaded through the session was the importance of segmenting caregiver needs and designing interventions that meet them at the right moment. Carallel (in partnership with AmeriHealth) showcased how their model does this:
Prioritized pathways that guide caregivers through stages of need.
Enhanced video content offering step-by-step support.
A library of over 2,000 evidence-based strategies—everything from behavior management to medication reminders—customized to the care context.
The central question: Is the caregiver on the periphery, or are they recognized as an integral partner in care?
Programs that succeed are those that build relationships of trust, positioning caregivers not as passive recipients of instructions but as empowered partners whose choices and context shape the intervention.
The Role of Technology: Extender, Not Replacement
Technology featured heavily in this session, but not in the usual “innovation-first” framing. Speakers urged caution against overhyping AI or apps as silver bullets.
Instead, they framed technology as an extender of human capacity:
Just-in-time training delivered via apps can provide immediate support when caregivers face a new challenge.
Bite-sized resources—short videos, micro-learnings, or peer exchanges—help information stick. (As one speaker reminded the audience: people forget 80% of what they’re told within five minutes.)
Reinforcement from multiple angles (peer groups, follow-up sessions, live workshops) ensures lessons move from knowledge into practice.
The goal is not to digitize caregiving, but to leverage digital tools to strengthen human touchpoints.
Peer Discussions and Reflection
Another major thread was the value of peer-to-peer learning. Family caregivers often feel isolated, and many hesitate to ask for help until they are already overwhelmed. Structured peer discussions create space for reflection, adjustment, and encouragement.
Dementia caregiving stood out as a clear example. Over 2,000 strategies exist for managing behavioral challenges, yet the best results came when caregivers had follow-up discussions with peers to talk about what worked, what didn’t, and how they might adjust.
Rural Caregivers and Access Barriers
The session also highlighted a persistent inequity: caregivers in rural areas.
Many are part-time workers without access to health benefits.
Training opportunities are limited.
Access to healthcare for caregivers themselves is constrained, leaving them unsupported.
Technology offers partial solutions (telehealth, online training, digital resources), but the infrastructure—broadband access, digital literacy, ongoing support—remains uneven. Addressing these gaps will be key to preventing rural caregivers from being left behind.
Optimizing the Family–Paid Caregiver Relationship
Perhaps the most intriguing discussion focused on the relationship between family caregivers and direct care workers (DCWs). Too often, these groups are treated separately, even though in practice they overlap and interact constantly.
How do we create trusting partnerships between the two?
How do we help family caregivers see DCWs as allies, not intruders?
How do we equip DCWs to recognize the expertise and role of family members?
When this relationship works, outcomes improve for everyone: the care recipient, the family, and the workforce system that otherwise faces burnout and turnover.
Training, Retention, and Engagement
Speakers tied caregiver support back to the broader workforce conversation: training is also key to retention.
Caregivers who feel prepared and supported are less likely to burn out.
Direct care workers offered training and ongoing reinforcement are more likely to stay.
Case management, delivered through omni-present, omni-channel models, ensures consistency and prevents people from falling through the cracks.
Quarterly live workshops, supplemented by apps and digital modules, are increasingly viewed as the “maintenance dose” of support.
Results and Early Outcomes
The session included anecdotal and data-driven results from new approaches:
Increased caregiver confidence when just-in-time training is reinforced by peer reflection.
Progress becomes visible when small wins are shared and tracked.
Caregivers report stronger relationships with DCWs when technology is used to bridge—not widen—the gap between family and professional support.
While long-term, large-scale data is still developing, the consensus was clear: iterative, personalized programs are more sustainable than one-off interventions.
Reflections: Policy to Practice
This session underscored the messy reality of caregiving while offering practical glimpses of how states, health plans, and vendors are attempting to respond. The takeaways resonate well beyond the ballroom:
Caregiving is deeply individual. Tailored, segmented interventions are more effective than uniform programs.
Technology must extend human capacity, not replace it. Apps and AI are powerful, but only if they reinforce human trust.
Repetition matters. Bite-sized, reinforced learning works better than one-time trainings.
Relationships drive outcomes. Whether family-to-family or family-to-DCW, trust and partnership shape success.
Rural and underserved caregivers cannot be left behind. Without broadband, digital literacy, and equitable access, disparities will deepen.
Why This Matters for Policy Leaders
Family caregiving is no longer a fringe issue—it is a central component of the HCBS system. As policymakers weigh investments, rate-setting, and waiver design, they must recognize that strengthening family caregivers is workforce policy.
Supporting caregivers improves retention, reduces costs from avoidable crises, and creates stability in home- and community-based care.
The “messiness” of caregiving should not be seen as an obstacle to policy, but as a call to design systems flexible enough to respond to real-world complexity.
Looking Ahead
The Caregiving and Workforce Intensive set the stage for deeper conversations about registries, job platforms, and training pathways—topics that will be unpacked in the next posts of this series.
For now, the message is simple but urgent: if we want a strong care system, we must strengthen family caregivers through connection, support, and recognition.
