When Patti LaFleur’s mother fell and broke her hip in April 2021, LaFleur thought her years of caregiving experience had prepared her for anything. She had been managing her mother Linda’s early-onset dementia for seven years, handling insulin injections for her Type 1 diabetes, assisting with daily activities, and providing round-the-clock support. But when two emergency medical technicians brought her mother home on a stretcher after hip replacement surgery and simply wished LaFleur well before leaving, she realized how unprepared she truly was.
LaFleur didn’t know how to change her mother’s diapers when she could barely move. She didn’t know how to turn her bedridden mother to prevent bedsores. Even after an occupational therapist visited days later, she continued facing tasks she wasn’t sure how to handle safely. “It’s already extremely challenging to be a caregiver for someone living with dementia,” LaFleur told KFF Health News. “The lack of training in how to care for my mother just made an impossible job even more impossible.”
LaFleur’s experience illustrates a critical gap that has persisted for too long: family caregivers have remained in the shadows of our health care system. These individuals — working tirelessly, often without formal training or adequate support — form the backbone of long-term care for millions of Americans.
According to a 2023 poll of family caregivers of Medicare beneficiaries, more than 50 percent said they would benefit from training and more than 70 percent said they would be helped by in-home and social service benefits.
Now, a promising shift from the Centers for Medicare and Medicaid Services (CMS) Innovation Center could spark better support for family caregivers and help integrate them into health care teams.
The CMS Innovation Center recently released a new strategic framework, “Strategy to Make America Healthy Again,” that explicitly recognizes family caregivers as a critical population and paves the way for greater integration and support within value-based care models.
The strategy envisions transforming care delivery through prevention, empowerment, and competition, explicitly acknowledging “the growing cohort of Americans in their 80s and beyond — and often their caregivers” as a critical demographic. This recognition moves caregivers from a hidden role to an explicitly acknowledged component of the health care landscape — a step toward building systems that understand and address caregivers’ needs.
This builds on crucial progress in payment transformation aimed at recognizing the value of family caregivers. In 2024, CMS authorized Medicare payments to health care professionals to train caregivers to better navigate their responsibilities. According to the National Alliance for Caregiving and AARP, about 42 million Americans provided unpaid care to people age 50 and older in 2020, yet fewer than 30 percent of caregivers talk to health care professionals about how to provide that care.
Had this training been available to LaFleur, her mother’s final months might have been less stressful and safer. The proposed Medicare coverage for caregiver training represents concrete support that can transform abstract policy into real-world assistance for families like the LaFleurs.
As the Innovation Center begins implementing this strategic shift, several key areas deserve close attention. We should look for opportunities to:
- Integrate caregiver assessment into risk models for accountable care organizations and Medicare Advantage plans, incentivizing providers to understand and address caregiver needs as part of their overall care strategy.
- Champion caregiver-specific quality measures that could be standardized across models, providing a way to measure the impact of caregiver support interventions.
- Explore new waiver authorities that enable caregiver support services within value-based care arrangements.
- Elevate mobile and digital health tools designed with caregivers in mind, ensuring technology meets their unique needs for information, coordination, and support.
- Champion community partnerships and payments that bridge clinical and social support for caregivers.
This renewed focus on prevention, home-based care, and consumer empowerment creates a more integrated approach to supporting caregivers. By positioning caregiver initiatives as drivers of improved outcomes and cost reduction, health systems, accountable care organizations, and private sector innovators have even more compelling leverage to advance caregiver-centered innovation within CMS payment models. This pivot opens new avenues to further the goals outlined in the 2022 National Strategy to Support Family Caregivers to advance caregiver health and wellness.
For families like the LaFleurs, these policy shifts represent hope that future caregivers won’t face the same isolation and lack of preparation that made an already impossible situation harder. Patti’s mother, Linda LaTurner, passed away in March 2022. Her daughter’s experience underscores why systematic support for family caregivers isn’t just good policy — it’s an urgent human need.
To learn more, check out a new policy brief from the National Alliance for Caregiving on the CMS Innovation Center’s framework and its implications for family caregivers.
