Simplifying Dementia Caregiving: Introducing the Care-Wallet Study
Introduction
Caring for someone with dementia is one of the most challenging responsibilities a family member can face. From managing medications and coordinating appointments to navigating benefits and addressing behavioral changes, family caregivers often feel overwhelmed, unprepared, and isolated. Many struggle to access the right support at the right time, leading to increased stress, delayed care decisions, and gaps in the quality of care provided at home.
What if there was a better way?
EmTech Care Labs, in collaboration with the University of Maine Center on Aging, is conducting a groundbreaking research study to evaluate Care-Wallet™—a secure, HIPAA-compliant platform designed to transform how families coordinate care for loved ones with Alzheimer’s disease and related dementias.
The Challenge of Dementia Caregiving
Family caregivers form the foundation of dementia care in America, yet they navigate a healthcare landscape that provides minimal support for their complex responsibilities. More than 11 million Americans provide unpaid care for people living with Alzheimer’s disease and related dementias¹, contributing an estimated 18 billion hours of care annually valued at nearly $350 billion². Despite shouldering this enormous responsibility, most family caregivers receive little formal training, limited ongoing support, and minimal recognition from the healthcare system. The numbers tell a sobering story. Nearly 60% of dementia caregivers report high or very high emotional stress³, and approximately one-third experience depression⁴. The physical toll is equally severe: dementia caregivers have a higher likelihood of suffering from chronic conditions compared to non-caregivers⁵, and many delay or forego their own medical care due to caregiving demands. Financially, families bear significant out-of-pocket costs—averaging $12,000 per year—for medications, medical services, adult day care, and home modifications.⁶ The complexity of dementia care creates unique, cascading challenges that compound over time:
Medical records are scattered across multiple providers, specialists, and healthcare systems with no unified view. Critical information about diagnoses, medications, and care instructions often exists only in the caregiver’s memory or hastily scribbled notes, creating dangerous gaps when emergencies arise or care transitions occur.
Care coordination burden
Family caregivers manage numerous appointments per month while juggling multiple medications, tracking cognitive and behavioral changes, and coordinating with physicians, specialists, pharmacies, and community services—all within a fragmented healthcare system that doesn’t communicate effectively.
Resource navigation maze
Despite billions in federal and state funding for aging services, families struggle to identify and access relevant support programs. Eligibility criteria, application processes, and waiting lists vary widely by location, leaving caregivers to navigate this complex landscape alone while managing urgent daily care needs.
Unlike healthcare professionals who work within teams and have access to clinical supervision, family caregivers make critical decisions in isolation, often without guidance on complex issues like medication management, safety modifications, behavioral interventions, or advance care planning.
Hidden Finanical Strain
Beyond direct care costs, families face lost wages from reduced work hours or employment exits, depletion of retirement savings, and stress over paying for care while attempting to preserve the care recipient’s assets. Many struggle to track expenses across family members or identify available financial assistance programs. These challenges exact a devastating toll that extends far beyond statistics. Dementia caregivers often report substantial financial problems⁷ and are at significantly elevated risk for burnout, relationship strain, and premature institutionalization of their loved ones. Many describe feeling trapped, overwhelmed, and unprepared for responsibilities that intensify as the disease progresses. The vast majority report that they could provide better care if they had access to expert guidance, better tools for coordination, and connections to appropriate support services—precisely the gaps that Care-Wallet™ is designed to address.
A New Approach: Care-Wallet™
Care-Wallet™ represents a fundamental shift in how dementia care is coordinated at home. Built on evidence-based assessment tools aligned with CMS Minimum Data Set criteria, the platform creates a comprehensive, person-centered care plan that serves as a living document—one that evolves as the patient’s needs change.
EmTech Care Labs was founded by Aarabi Balasubramanian, whose personal caregiving journey inspired the creation of Care-Wallet. With twenty years of experience in strategy and innovation across pharma, biotech, and healthcare, and an MBA from Dartmouth’s Tuck School of Business, Aarabi understands both the clinical and operational challenges families face. After spending nearly five years navigating her own mother’s Parkinson’s diagnosis and care coordination across two countries, she recognized that even resourceful, medically engaged families struggle with the fragmented landscape of dementia care. EmTech Care Labs is a member of StartUp Health’s Caregiving and Brain Health Moonshot communities, reflecting the company’s commitment to transforming care delivery for families managing neurodegenerative conditions at home.
What if there was a better way?
The platform guides caregivers through a structured onboarding process that captures critical information about both the care recipient and the family caregiver’s needs:
Caregivers complete evidence-based modules covering health and medical needs, functional and cognitive status, daily living environment, safety considerations, and financial circumstances. This information can be entered independently or with assistance from a Care-Wallet care coordinator.
Personalized Care Plan
Based on the assessment, Care-Wallet automatically generates a detailed care plan that includes a one-page emergency summary for first responders, a complete medication list linking prescriptions to diagnoses, care provider contact information and appointment tracking, and connections to local resources and benefit programs.
Expert Care Management
Caregivers receive personalized support from an interdisciplinary team of licensed care managers, including nurse practitioners, occupational therapists, and licensed social workers. These professionals provide virtual counseling sessions tailored to the family’s specific needs—whether addressing medication management, safety modifications, or benefits navigation.
Through monthly check-ins, care managers help caregivers update the care plan, identify emerging challenges, and implement proactive solutions addressing complex care needs across multiple chronic conditions. The platform maintains detailed care records that document conversations, recommendations, and progress over time.
Secure Collaboration
The HIPAA-compliant platform enables family members to coordinate care while maintaining appropriate privacy controls. When authorized, physicians and other healthcare providers can access care plan updates and summaries, bridging the gap between home-based care and clinical settings.
Education and Empowerment
Built on validated assessment tools and through virtual counseling sessions, Care-Wallet™ guides family caregivers in developing and managing a comprehensive, person-centered care plan with specific recommendations on care coordination, dementia-specific caregiving, healthcare navigation and benefits management. In essence, Care-Wallet™ helps caregivers save time, manage care for their loved one(s) proactively and make timely care decisions.
The Research Study: Measuring Impact
- Caregiver preparedness: Do caregivers feel more ready to handle caregiving responsibilities?
- Caregiver confidence: Does the platform increase confidence in providing quality care?
- Caregiver burden: Does Care-Wallet reduce the stress and strain of caregiving?
Additionally, the research will gather detailed feedback about user satisfaction with specific platform features, providing insights that will shape future enhancements.
The study is open to family caregivers who meet the following criteria:
- Providing or coordinating care for someone with dementia (including Alzheimer’s disease)
- The care recipient resides in Maine or Massachusetts and does not live full-time in a care facility
- Spends at least a few hours monthly providing or coordinating care
- Has room to grow in caregiving confidence
- Has access to a desktop or laptop computer with internet
- Has not previously used Care-Wallet
Participants receive $100 compensation for completing three electronic surveys and a 30-minute interview over approximately 7 weeks. The total time commitment, including using Care-Wallet, is estimated at 5-8 hours. All information provided is kept strictly confidential.
Study Participation
The Care-Wallet study addresses a critical gap in dementia care delivery. While much attention has focused on medical treatments and facility-based care, the reality is that most people with dementia live at home, cared for by family members who receive minimal support. By demonstrating that technology-enabled care management can improve caregiver outcomes, this research has the potential to:
- Transform care delivery models: Show that proactive, coordinated support can be delivered virtually and at scale
- Improve quality of life: Reduce caregiver burden while enabling care recipients to remain safely at home longer
- Inform policy: Provide evidence for reimbursement and coverage of family caregiver support services
- Advance the field: Contribute to the evidence base for person-centered, technology-enabled dementia care
For healthcare providers, community organizations, and aging services agencies, the study offers an opportunity to explore innovative approaches to supporting the families they serve. For caregivers, it provides access to tools and expertise that are typically unavailable outside of specialized clinical programs.
- AI-powered extraction of information from medical records and clinical documents
- Integration capabilities with electronic health records
- Mobile companion applications for reminders and on-the-go access
- Enhanced resource repositories with geographically specific services
EmTech Care Labs is also developing solutions to address broader care coordination challenges, including capabilities for patients who self-manage their care in early disease stages and enhanced collaboration tools for multi-family-member scenarios.
HITLAB Partnership: Advancing Digital Caregiving Innovation
Whether you’re a family caregiver struggling to coordinate care, a healthcare provider seeking better ways to support patients at home, or a community organization committed to enhancing services for older adults, the Care-Wallet initiative represents an opportunity to be part of meaningful change.
If you’re coordinating care for someone with dementia in Maine or Massachusetts, consider participating in this research. Your involvement will not only provide you with valuable support and compensation—it will contribute to knowledge that helps countless other families facing similar challenges.
For Healthcare Providers and Organizations
This study offers insights into how technology-enabled care management can complement and enhance existing chronic and complex care management services. Understanding the platform’s impact on caregiver outcomes can inform your own programs and partnerships.
For Potential Partners
Organizations interested in exploring collaborations with EmTech Care Labs or supporting study recruitment are encouraged to reach out. Together, we can expand access to innovative caregiving support across communities.
Getting Started
Caregivers interested in participating can complete a 10-minute screening survey. A Care-Wallet staff member will follow up by email regarding eligibility. For questions about the study, contact Study Coordinator Rachel Coleman.
The Care-Wallet study is led by Dr. Jennifer Crittenden, Assistant Professor of Social Work at the University of Maine and Associate Director for Research at the University of Maine Center on Aging. Study participation is completely voluntary, and all information provided is kept confidential in accordance with research ethics and HIPAA privacy standards.
- Alzheimer’s Association. (2024). 2024 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia, 20(5).
- Alzheimer’s Association. (2024). 2024 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia, 20(5).
- National Alliance for Caregiving & AARP. (2020). Caregiving in the U.S. 2020. Washington, DC: NAC and AARP.
- Schulz, R., & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9 Suppl), 23-27.
- Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129(6), 946-972.
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