People living with dementia can have better health outcomes and quality of life when their health and social needs are met holistically, and their family caregivers are supported. Yet most families don’t have access to this kind of care, in large part because of how Medicare pays for services. In an important step forward, the Centers for Medicare & Medicaid Services (CMS) announced a new payment model for comprehensive dementia care in July 2023, and a year later, the CMS Innovation Center launched an eight-year demonstration project to test the model with 390 participating providers in 46 states. Under the Guiding an Improved Dementia Experience (GUIDE) Model, these Medicare Part B providers will receive a capitated per beneficiary payment for providing integrated care that addresses both health care and daily life needs, while supporting family caregivers.
The GUIDE Model is important because it encourages health care systems to adopt comprehensive, proven approaches to holistic care, in partnership with community-based service providers, and it provides services to both the person with dementia and a family caregiver. The model’s goals are to improve the quality of life for people living with dementia and their caregivers, and to reduce unnecessary hospitalizations, emergency department use, and nursing home admissions. Covered services include care coordination and management, caregiver education, 24/7 support, and respite services. This blog post explores the need for this new payment model, resources available to help GUIDE providers succeed, and how all providers can improve the quality of dementia care.
The Growing Need for Comprehensive Dementia Care
As our population ages, the number of individuals living with dementia continues to rise. Dementia affected more than 6.7 million Americans in 2023, with cases projected to number 14 million by 2060. Historically, resources to support people with dementia and their families have been scarce and disorganized. Screening is limited, and even when someone is diagnosed with dementia, they rarely receive a comprehensive care plan, forcing family caregivers to patch together their own strategies.
Defining Comprehensive Dementia Care
Comprehensive dementia care is a relatively new concept in health care and is defined by eight core elements. These include:
- Caregiver support
- Coordination of care
- Treatment of related conditions
- Medication management
- Self-management
- Psychosocial interventions
- Ongoing care plans
- Continuous monitoring and assessment
Comprehensive dementia care programs are designed to meet the complex needs of patients while also prioritizing caregiver support through dedicated care navigators or coaches who provide essential guidance, emotional support, and access to resources. They help caregivers navigate health care systems and maintain their own well-being while supporting their loved ones.
The John A. Hartford Foundation (JAHF) has invested in evidence-based initiatives aimed at expanding access to comprehensive dementia care. One notable initiative is the Alzheimer’s and Dementia Care (ADC) Program, developed at UCLA, which has proven highly effective in enhancing care for individuals with dementia and their caregivers. Adopting sites of the ADC program have achieved positive outcomes, including significantly higher quality of dementia care scores compared to the national average. Sites have also shown impressive reductions in health care utilization: a 12 percent decrease in hospitalizations, 20 percent fewer emergency department visits, 21 percent fewer intensive care unit stays, 26 percent fewer hospital days, and a 40 percent decrease in nursing home placements. Moreover, the program has demonstrated cost savings of $2,404 per patient in Medicare costs compared to non-ADC patients.
The GUIDE Model: A Framework for Enhanced Dementia Care
Proven comprehensive dementia care programs like ADC could benefit far more people than they currently do, but are limited by financing barriers. The GUIDE Model was introduced to solve this problem. The model introduces an alternative payment methodology, providing per-beneficiary payments to support collaborative, team-based care. Health systems participating in GUIDE must address the needs of unpaid caregivers by offering training, support services, and access to respite care. Additionally, the model includes health-related social needs screening to connect beneficiaries and caregivers with appropriate community resources.
The GUIDE Model began operations on July 1, 2024, with 96 health system participants selected into what GUIDE calls its “Established Track,” where comprehensive dementia care already exists. In addition, GUIDE has enrolled 294 “New Program Track” participants, giving them a pre-implementation period starting July 1, 2024, with GUIDE services starting on July 1, 2025.
To meet the needs of beneficiaries at any GUIDE Model site, Established or New, the implementation will need to be customized to meet unique needs and preferences across different patient populations. Therefore, GUIDE has included several equity-focused components. This includes a requirement for participants to develop and implement a Health Equity Plan to reduce disparities in dementia care outcomes. The model also supports the creation of tailored dementia care programs for underserved areas and populations, utilizing data-driven approaches to identify disparities and implement targeted interventions. A health equity adjustment in the monthly care management payment allocates additional resources to care for underserved beneficiaries.
National Dementia Care Collaborative: Promoting Evidence-Based Care for GUIDE Participants and Others
The National Dementia Care Collaborative (NDCC), supported by JAHF and organized by EDC, is driving the adoption of evidence-based comprehensive dementia care programs. This collaborative effort brings together six dementia care programs proven in clinical trials: Benjamin Rose Institute Care Consultation, Care Ecosystem, Eskenazi Healthy Aging Brain Center, Integrated Memory Care, Maximizing Independence at Home, and UCLA ADC Program. Their collective goal is to swiftly expand the reach of these programs, making comprehensive dementia care more accessible across communities. Since the introduction of the GUIDE Model, they anticipate increased adoption of these programs by GUIDE participants because they are highly aligned with the GUIDE standards and requirements. In addition, the NDCC aims to extend comprehensive care practices beyond the GUIDE Model, promoting increased access to high-quality dementia care among fee-for-service providers not participating in GUIDE and also in value-based care, including Medicare Advantage programs.
Finding Evidence-Based Dementia Caregiving Support: Best Programs for Caregiving
Health systems and community-based organizations caring for people living with dementia and their family caregivers have additional resources available to help implement evidence-based programs.
One such resource is Best Programs for Caregiving (BPC), an online tool that provides detailed information on 50 evidence-based programs designed to support individuals with dementia and their caregivers. BPC is a valuable resource for sites participating in the GUIDE Model, helping them to identify suitable caregiver support and comprehensive dementia care programs that align with their organizational needs and the preferences of those they serve. It also offers guidance on how to successfully implement these programs. Caregivers can use BPC to locate local dementia support services simply by entering their ZIP Code.
How GUIDE, NDCC and BPC Connect to Support Better Dementia Care
The GUIDE Model, BPC, and NDCC collectively enhance access to comprehensive dementia care programs in several ways. The GUIDE Model, piloted by CMS for participating health systems, sets high standards for dementia care delivery. Although the GUIDE Model is currently a demonstration project with limited availability, it sets a benchmark for dementia care nationwide under CMS’ guidelines. If the evaluation of GUIDE demonstrates better care, then it could become a national standard for all health systems.
To help GUIDE succeed, and to advance comprehensive dementia care beyond the GUIDE participants, NDCC and BPC play pivotal roles in helping health systems and their community partners adopt proven methods shown to help people living with dementia and their caregivers, providing critical resources and guidance to enhance dementia care across diverse communities. GUIDE participants will be learning from each other and also have valuable lessons to share with other GUIDE participants and beyond; this will be both about implementing GUIDE and also how other evidence-based models, such as Rush University Medical Center’s Caring for Caregivers program, can be useful in supporting caregivers.
Conclusion
Advocacy efforts over recent decades have played a crucial role in reducing stigma and raising awareness about the needs of individuals living with dementia and their caregivers. With support from organizations like JAHF, initiatives such as the GUIDE Model, NDCC and BPC are setting the new standards for dementia care delivery. These efforts not only aim to enhance the quality of life for those affected by dementia but also to provide much-needed support and resources to caregivers. We need more of this, faster. While CMS’ GUIDE Model is a major milestone; it is also only a first step.