Guiding an Improved Dementia Experience by Clearing the Path for Comprehensive, High-Quality Dementia Care

Alzheimer’s disease and related dementias are devastating conditions for a person and their family and caregivers. The progressive course of dementia can threaten an individual’s autonomy, and families can be emotionally, physically, mentally, and financially strained. Often, a family member finds themself in a new, unexpected role as a caregiver supporting the person living with dementia. 

To improve the care and support of people living with dementia and their caregivers, the Centers for Medicare & Medicaid Services (CMS) Innovation Center is pleased to have launched the Guiding an Improved Dementia Experience (GUIDE) Model on July 1, 2024, with 390 participating organizations building Dementia Care Programs (DCPs) that will serve hundreds of thousands of people with Medicare nationwide. This model delivers on a promise in the Biden Administration’s Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers and aligns with the National Plan to Address Alzheimer’s Disease.^[1] It also dovetails with CMS’ efforts to cover drugs that slow the progression of Alzheimer’s disease, including the launch of the National Patient Registry on July 6, 2023.[2] 

The GUIDE Model will be one of the first Innovation Center care models to focus on longitudinal, condition-specific comprehensive care, a key element of the Innovation Center’s 2022 Specialty Strategy.[3] It will also support the Innovation Center’s goal of increasing the number of individuals in a care relationship with accountability for quality and total cost of care by providing participating organizations with a new Medicare payment for delivering a comprehensive package of care coordination and management, caregiver education, and certain respite services. That payment is adjusted based on the DCP’s performance on a set of quality measures, including a measure of total cost of care and long-term nursing home placement. The GUIDE Model was informed by clinical evidence and builds on previous Innovation Center funded research, specifically the Health Care Innovation Award efforts in dementia care.[4]

The GUIDE Model aims to increase access to much-needed support for people living with dementia and their caregivers. Throughout the eight-year model test, the Innovation Center will support participating organizations in their efforts to build and strengthen their own DCPs and expand care delivery to even more service areas across the country. 

Encouraging Equitable Access and Care

DCPs will serve diverse regions within each state; approximately 32% of DCPs will operate in rural or urban areas representing communities with low socio-economic status. Additionally, Black and Hispanic populations have higher rates of Alzheimer’s disease and related dementias compared to White populations and more often experience under-diagnosis and delayed diagnosis, which in turn hinders access to essential dementia care services and supports.^[5],[6],[7] The GUIDE Model is designed to encourage equitable care across all regions and racial and ethnic groups and includes several policies to ensure that underserved communities have equal access to the model's enhanced dementia care delivery approaches, with the objective of reducing disparities in accessing high-quality services. This is critical to achieving the Innovation Center’s strategic objective to advance health equity.^[8] 

In line with other Innovation Center models, participants are required to develop and implement a Health Equity Plan. GUIDE Participants must identify disparities in outcomes in their patient populations and implement initiatives to measure and reduce these disparities over the course of the GUIDE Model. They must also set goals and monitor progress over time by identifying and delivering evidence-based interventions for addressing health disparities and achieving equitable outcomes. 

GUIDE Participants also represent a wide range of health care providers, including large academic medical centers and small group practices. 68% of the selected applicants identify their organization as a physician group practice or clinic. Community-based organizations, health systems, hospice agencies, and other practices will also participate in the model and form DCPs. Additionally, the GUIDE Model encourages collaboration with partner organizations to enhance care coordination and care delivery within a geographic area. Partner organizations may include respite providers, adult day care centers, hospitals, community-based organizations, home health agencies, and more. These partnerships will enhance GUIDE Participants’ abilities to tailor services to each person with dementia, promote whole person-centered care, and improve outcomes across the country.

The GUIDE Model will also enhance access to the support and resources that caregivers need. Unpaid caregivers – which are often family members – will be connected to evidence-based education and support, such as training programs on best practices for caring for a loved one living with dementia. DCPs will also help caregivers access respite services, which enable them to take temporary breaks from their caregiving responsibilities.  When used over time, respite services have been found to help unpaid caregivers continue to care for their loved one at home, preventing or delaying the need for facility care. 

Evaluating the Success of the GUIDE Model 

The Innovation Center will evaluate the GUIDE Model’s impacts on the lives of people with dementia and their unpaid caregivers. The evaluation results will inform any decision to expand the duration and scope of the GUIDE Model. 

The purpose of the GUIDE Model evaluation is to: 

1. Assess the experience of aligned individuals with dementia, their caregivers, and GUIDE Participants; and
2. Estimate the impact of the GUIDE Model on key outcomes, including quality of life, caregiver burden, patient experience, long-term nursing home use, Medicare and Medicaid expenditures, and health equity. 

Strong model participation and data collection will help ensure a comprehensive evaluation. This is crucial for generating actionable results for policy makers on the impact of the GUIDE Model and care delivery transformation for people living with dementia and their caregivers. 

What’s next?

On July 1, 2024, the 96 participating organizations in the Established Program Track began their participation in the GUIDE Model.[9] These Established Program Track participants have already been providing most of the GUIDE care delivery services for over a year or more to people with dementia and their caregivers. CMS selected these participants for this track because they had a thorough plan in place to begin offering the full suite of GUIDE care delivery services beginning July 1, 2024. CMS assigned the 294 participants who need more time to fully develop and launch their DCPs to the New Program Track and those organizations will begin offering GUIDE services on July 1, 2025.

CMS has published a list of GUIDE Participants on the GUIDE Model website. The list may serve as a resource for individuals seeking to identify a GUIDE participant’s DCP. People with Medicare seeking care through a GUIDE DCP must also consent to their alignment to a participant in the GUIDE Model. Individuals receiving care from GUIDE Participants maintain their ability to receive health services from any Medicare provider. 

The Innovation Center is thrilled that DCPs in the Model are offering comprehensive care. Through the GUIDE Model, the Innovation Center is testing the use of high-quality, comprehensive, and longitudinal dementia care to improve care, reduce expenditures, and advance health equity. The GUIDE Model demonstrates the Innovation Center’s commitment to its goal of achieving health care transformation, thereby improving outcomes for people living with dementia and their caregivers.