Dementia care presents a complex landscape involving numerous interactions with primary care providers, specialists (especially those managing chronic conditions alongside cognitive issues), social services, medication management, and caregiver support. This intricate network can be challenging and often frustrating for individuals living with Alzheimer's or other forms of dementia, as well as for their caregivers. Without a clear and defined path, any obstacle or deviation can lead to significant consequences. This complexity can result in delayed detection, diagnosis, and treatment of early-stage cognitive issues or mild cognitive impairment (MCI). For caregivers, any diversion might lead to missed opportunities for essential education, connections with community-based services for respite and behavioral health support, or access to resources that could alleviate their stress. Breakdowns in care transitions between healthcare providers and settings compromise the delivery of high-quality, comprehensive, and appropriate dementia care. This is evidenced by an increase in emergency room visits, hospitalizations, and a decreased quality of life. However, caregivers and their loved ones who have robust support systems tend to fare better, managing challenges more effectively and maintaining a higher quality of life.
The Intricacies of Dementia Care Exacerbate Caregiver Burden and Stress
Unpaid caregivers, often referred to as care partners, typically include spouses, family members, or friends who provide extensive, and sometimes all-encompassing, care for individuals living with Alzheimer's or other forms of dementia. In 2023 survey revealed that approximately 11.5 million family members and other caregivers for those living with Alzheimer's or dementia contributed an estimated 18.4 billion hours of unpaid care. On average, this amounts to nearly 31 hours of care per caregiver per week or 1,612 hours per caregiver annually. A significant portion of this time is spent interacting with the healthcare system or learning more about dementia caregiving, with nearly two-thirds (63%) assisting with health or medical care.
Daily healthcare activities for caregivers often include scheduling appointments with healthcare providers, attending doctor's visits, and organizing social and community support services such as in-home assistance, adult day programs, or meal delivery. Collectively, these tasks and the coordination of care across multiple healthcare providers can be described as care coordination. The effort required to navigate the healthcare system adds to the already high levels of emotional and physical stress experienced by caregivers.
Caregivers benefit greatly from assistance in gathering, synthesizing, and acting upon dementia care information in a way that alleviates their stress. With increasing awareness, many primary care providers and health systems are now evolving to offer this essential level of support.
Nationwide Movement to Enhance Care While Alleviating Caregiver Strain
For over a decade, the National Plan to Address Alzheimer’s Disease has included goals aimed at improving healthcare quality and expanding support for individuals living with Alzheimer's disease or other dementias, as well as their families. Recently, the Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM), an advocacy affiliate of the Alzheimer’s Association, have championed critical legislation to address the complexities of the healthcare system. This legislation, the bipartisan Comprehensive Care for Alzheimer's Act, proposed a new approach to dementia care management. It encompasses care coordination and navigation, caregiver education and support, and alternative payment models for physician reimbursement.
In July 2023, the Centers for Medicare & Medicaid Services (CMS) announced the culmination of policy, working group, and legislative efforts, such as the Comprehensive Care for Alzheimer’s Act, with the introduction of the Guiding an Improved Dementia Experience (GUIDE) Model. This new model represents a pivotal opportunity to reshape and enhance dementia care in the United States.
What is the GUIDE Model?
The Guiding an Improved Dementia Experience (GUIDE) Model is an eight-year pilot program in dementia care management, designed to assist dementia patients and their caregivers in better navigating healthcare and social support systems to improve dementia care. The GUIDE Model has three primary aims:
1. Improve the quality of life for people living with dementia.
2. Reduce strain on unpaid caregivers.
3. Enable people living with dementia to remain in their homes and communities.
Key Features of the GUIDE Model:
- Support Services: Participating healthcare providers will deliver comprehensive, person-centered assessments and care plans, care coordination, and 24/7 access to a support line. Patients and caregivers will also have access to a care navigator to help them access services and support.
- Caregiver Support: GUIDE will provide training, referrals to community-based social services and supports, 24/7 access to a support line, and respite services to caregivers.
- Alternative Payment Model (APM): GUIDE is testing an APM to incentivize health systems, shifting payments from a fee-for-service structure to a monthly per-patient payment for all services under the GUIDE Model umbrella, including those not typically reimbursed by Medicare.
- Equity and Access: The GUIDE Model ensures that underserved communities have equal access to the intervention by incorporating policies to advance health equity. This includes Health-Related Social Needs (HRSN) screenings, financial and technical support for developing new dementia care programs in underserved areas, and annual reporting on progress toward health equity objectives.
Eligibility and Participation:
- Beneficiary Criteria: Community-dwelling Medicare fee-for-service (FFS) beneficiaries with a dementia diagnosis, who have Medicare as their primary payer, are enrolled in Medicare Parts A and B, and are not enrolled in Medicare Advantage or long-term nursing home care.
- Provider Eligibility: Medicare Part B enrolled providers/suppliers eligible to bill for Medicare Physician Fee Schedule services can participate. Organizations that do not meet these qualifications can contract with partner organizations that are Medicare providers/suppliers.
Comprehensive Care Programs:
GUIDE Model participants will establish dementia care programs (DCPs) that provide ongoing, longitudinal care and support through an interdisciplinary team. Beneficiaries and their caregivers will be assigned a care navigator to help them access clinical and non-clinical services such as meals and transportation through community-based organizations.
Health Equity Measures:
- Screening and Referrals: Participating providers will implement HRSN screenings and referrals.
- Support for Underserved Areas: Financial and technical support will be provided for developing new dementia care programs in underserved areas.
- Data and Reporting: Annual reporting on health equity objectives and using model data to identify disparities and target improvements.
- Health Equity Adjustment: An adjustment to the model’s monthly care management payment to provide additional resources for underserved beneficiaries.
The GUIDE Model represents a pivotal opportunity to reshape and enhance dementia care in the United States, supporting the Biden Administration’s April 2023 Executive Order 14095 on Increasing Access to High-Quality Care and Supporting Caregivers and advancing key goals of the National Plan to Address Alzheimer’s Disease.
Looking Forward: Moving Beyond GUIDE
The foundational principles of the GUIDE model draw from successful randomized controlled trials conducted at esteemed institutions such as UCSF (further details on the Care Ecosystem program can be found here), UCLA, Emory, and Ochsner. Key features of the GUIDE model include:
- Delivering evidence-based care through an interdisciplinary team of dementia specialists.
- Providing caregivers with round-the-clock access to education and support, alongside personalized referrals to community-based services (e.g., meal delivery, transportation, respite care, home modifications, etc.).
- Utilizing a data-driven approach to understand and address the unique needs of patients and caregivers.
These principles align closely with population health strategies applied to other chronic conditions (e.g., CKD, diabetes) and form the foundation of our approach at Tembo Health. They shape how we deliver care and collaborate with partners.
To truly advance Alzheimer’s and related dementia research, the pivotal question is: How can we expand these principles beyond the GUIDE model? Beyond the regulatory reforms gaining momentum, we are particularly encouraged by the growing interest from Medicare Advantage plans seeking to align with federal initiatives outlined here. If you or a loved one are seeking dementia-related care, reach out to Tembo Health for expert assistance and comprehensive support.