Family caregivers: The “load-bearing wall” of homebased care

For most of my career in healthcare, I’ve watched us talk about high-risk members as if they exist alone — a risk score, a care plan, a line in a chart. But walk into almost any household where serious illness lives, and you’ll find someone else there: absorbing the shocks, making the decisions, keeping the whole system from breaking.

The family caregiver.

And for the most part, they’re invisible to the plans and providers responsible for the member’s care.

On a recent Carallel webinar, Dr. Heidi Syropoulos — a geriatrician and former Medical Director for Government Markets at Independence Blue Cross — put it in a way I haven’t stopped thinking about:

“Caregivers aren’t a nice thing to support. They’re really what I think of as the load-bearing wall of home-based care. And every one of these models depends on home-based care.”

Because she nailed it. Caregiver engagement isn’t a member-satisfaction add-on. It’s a performance lever. A financial lever, too. And treating it as anything less leaves both outcomes and dollars on the table.

Don’t get me wrong: members do feel the difference. Our caregiver-support program earns a 92% satisfaction score, an NPS of 76, and an 11% lift in CAHPS Access to Care — and those numbers matter. But satisfaction is the easy part of the story to tell and also the easiest to wave off as soft. The harder, more important truth is what caregiver engagement does to performance and cost. Which is exactly where our data gets compelling.

The largest workforce no one is managing

Start with the scale. About 63 million Americans — roughly one in four adults — provided unpaid care to an adult or child in the prior year (AARP & National Alliance for Caregiving, Caregiving in the U.S. 2025). AARP’s Valuing the Invaluable, updated this year, estimates that family caregivers deliver some 49.5 billion hours of care worth about $1.01 trillion annually — more than the nation spends on Medicaid. If that labor showed up on your P&L, it’d be the largest line item you have. But it’s not. This massive workforce sits off the books — until it fails.

And it’s fragile!. The classic Caregiver Health Effects Study found that caregivers experiencing strain had a 63% higher mortality risk than non-caregivers (Schulz & Beach, JAMA, 1999). The wall is load-bearing, and it’s certainly under load. Ready to crumble any minute.

Three reasons this is a performance issue, not a feel-good one

First, total cost of care. As Dr. Syropoulos put it, caregivers absorb the clinical and logistics shocks that would otherwise become emergency visits and readmissions. They don’t prevent all of them — but when they burn out, someone pays: the plan, the provider, the public.

Second, quality and performance metrics. Whether it’s STARS for Medicare Advantage, HEDIS for managed Medicaid, or value-based contract performance for provider groups, caregivers drive the behaviors that move the needle — medication adherence, timely follow-up, early symptom recognition.

Third (and my personal favorite), structural accountability. Caregivers already live inside the things you’re measured on: the Model of Care for Special Needs Plans, person-centered planning for LTSS, and care-team integration for value-based providers.

Start with who actually engages. If caregiver support were only a satisfaction play, you’d expect it to attract the easiest members — the ones who were going to do well anyway. Our data shows the opposite. The members who engage with Carallel carry risk scores roughly 80% higher than the broader population and close to twice the chronic-condition burden — averaging a 1.86 risk score and 3.5 chronic conditions against 1.04 and 1.7 across the book, and older as well (80 versus 74). We reach the members who need the most support, not the ones who need the least.

Total medical cost falls by an average of $423 PMPM — about 22% — after caregivers engage.

And engaging them bends cost. On a risk-adjusted basis — after accounting for that higher acuity — members who engage with Carallel cost 11% to 24% less than comparable members who don’t: roughly 11% less among those with an inpatient stay, and 24% less among those without. Total medical cost for the same members falls by an average of $423 PMPM on a risk-adjusted basis, about 22%, after they engage. This points where the logic predicts: this isn’t a satisfaction score, it’s the performance-and-financial lever showing up in the data.

The hooks already exist

CMS and NCQA don’t mandate caregiver engagement as a standalone requirement — but, as Dr. Syropoulos noted, it runs through the elements they audit: the Health Risk Assessment, the individualized care plan, the interdisciplinary care team, and transitions of care. For Medicaid LTSS, the federal Home and Community-Based Services settings rule requires person-centered planning directed by the member and the people they choose — which, in practice, brings the family caregiver to the table.

And then there’s the policy momentum. It’s only building. The bipartisan RAISE Family Caregivers Act produced the first National Strategy to Support Family Caregivers in 2022. And the CARE Act — now law in some 43 states and DC — requires hospitals to record a family caregiver and offer instruction on the tasks that caregiver will perform at home. The hooks are everywhere. But what’s missing almost everywhere is a defined program with accountability to match.

Program, or mom and apple pie?

So the question isn’t whether caregivers matter. Everyone agrees they do. The question is whether caregiver engagement shows up as a program someone owns — with identification workflows, stratification, referral pathways, and outcomes you report against — or whether it stays what I call mom and apple pie: a concept everyone supports but no one is accountable for.

The load-bearing wall already underpins your organization’s financial and operational performance. The only real choice is whether you’ll proactively reinforce it or let it buckle under its own weight.

How is your organization approaching this challenge? I’d love to hear your perspective – send me a note at scohen@carallel.com