Bringing Dementia Care Home

By Elizabeth L. Ciemins, PhD, MPH, MA, and Stephen Shields, MPH

More than 7 million Americans are living with Alzheimer's disease and Related Dementias (ADRD). Health and long-term care costs for people living with ADRD are projected to reach approximately $409 billion in 2026.¹ These patients have complex, often unmet care needs. Primary care is where most people living with dementia are seen, yet few receive the coordinated, dementia-specific support that could keep them healthier and living in their homes longer. Many of the needs facing patients and their care partners can be met with the right support, but they go unaddressed in routine practice.

A new pilot study published in Alzheimer's & Dementia: Translational Research & Clinical Interventions examines whether the Maximizing Independence (MIND) at Home Dementia Care Navigation Program could be adapted for the primary care setting, bringing clinic-based services and home-based care together to improve quality of life for community-dwelling persons living with ADRD.² MIND at Home systematically identifies and addresses patient and care partner needs through structured assessment, individualized care planning, disease education and coaching, and linkage to community services. This study was a collaborative effort between AMGA Research & Analytics, Johns Hopkins University, a physician-owned multispecialty medical group in Iowa, and a large multihospital system in North Carolina.

Why Primary Care?

Primary care is the front door for most people living with dementia. It is where early cognitive symptoms are often first recognized, where ongoing management occurs, and where care partners have a regular opportunity to raise concerns. However, the infrastructure for delivering coordinated, dementia-specific support remains limited in most primary care settings. Adapting MIND at Home for primary care was intended to close that gap directly by leveraging existing staff and EHR infrastructure rather than requiring new specialty programs or resources.

Inside the Pilot

A total of 105 dyads (38% of those screened), each comprising a person living with dementia and their care partner, enrolled for a three-month intervention. Each dyad received:

• a comprehensive needs assessment,
• a personalized care plan, and
• ongoing care navigation.

Five implementation strategies supported the model:

Upskilling existing staff to Memory Care Coordinators. Rather than adding new positions, the health systems trained current primary care team members to serve as Memory Care Coordinators, who anchored the program and worked alongside the broader care team. Staff chosen as Memory Care Coordinators were primarily nurses and nurse practitioners.

Standardized assessment and protocols. The care team used a structured dementia care needs assessment checklist and standardized implementation protocols, bringing consistency to how needs were identified and addressed across two very different organizations.

Core evidence-based care strategies. Coordinators delivered the model's established components, including disease education and coaching for people living with dementia and care partners, along with referrals and care coordination for needed services.

Combined clinic-based and home-based support. The model paired clinic encounters with home visits, extending the care team's view into the patient's living situation and the realities facing care partners.

Utilization outcomes captured from the EHR. Key utilization measures were obtained from routine electronic health record data collected during usual care.

The program proved feasible to deliver in primary care. Across enrolled dyads, 74% of identified needs were addressed during the short intervention window. Health care utilization measures, including hospital transfers, were feasible to collect from both sites using electronic health record data.

The Bottom Line for Health Systems

The study's findings show that a rigorously developed, home-based dementia care model can be adapted and embedded into primary care, delivered by existing staff, with most identified needs addressed and key outcomes captured from routine EHR data. The early utilization trends are encouraging.

AMGA-member health systems looking to strengthen dementia care do not have to choose between standing up a resource-heavy specialty dementia program or settling for what standard, busy primary care can manage on its own. MIND at Home meets or exceeds the requirements of the Centers for Medicare and Medicaid Services (CMS) Guiding an Improved Dementia Experience (GUIDE) Model,³ making it well positioned for health systems seeking a GUIDE-compatible dementia care program. This pilot offers a practical template for bringing structured, person- and care partner-centered dementia support into the primary care setting, paving the way for larger pragmatic trials of the benefits of MIND at Home at scale.

Elizabeth L. Ciemins, PhD, MPH, MA, is chief research officer for AMGA. Stephen Shields, MPH, is senior population health research analyst for AMGA.

To learn more about AMGA's Research Program, please contact research@amga.org and ask about the Research Interest Group!

The full study, published as open access in Alzheimer's & Dementia: Translational Research & Clinical Interventions, is available here. Funding for this study was provided by the National Institute on Aging.