For years, the Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) have led efforts to improve dementia care for those living with Alzheimer’s and other dementia and their caregivers. In recent weeks, we have seen exciting progress toward this goal. The Alzheimer’s Association announced it is launching the Dementia Care Navigation Roundtable (DCNR) to drive access and support for people newly diagnosed and living with dementia. And the Centers for Medicare & Medicaid Services (CMS) announced a new test initiative, the Guiding an Improved Dementia Experience (GUIDE) Model, which will provide access to dementia care management. 

Without the hard work of AIM advocates and bipartisan congressional champions, the recent action by CMS to create the GUIDE model would not have been possible. In 2018, the Alzheimer’s Association and AIM spoke with other experts in the field, and working together developed a proposal. Our proposal utilized the delivery framework of the dementia care management pilot programs previously funded by the Center for Medicare and Medicaid Innovation (CMMI) and created a capitated and performance-based payment structure for reimbursing providers. 

This proposal led to the introduction of the Comprehensive Care for Alzheimer’s Act (H.R. 1637 / S. 626) in both the 117th and 118th Congress. The bipartisan legislation had strong bipartisan support in Congress thanks to the tireless dedication of our advocates. Additionally, AIM has been regularly meeting with CMMI for several years to advocate for implementing this model. The GUIDE Model announced by CMS is consistent with this bipartisan bill’s goal to provide access to dementia care management.

The Comprehensive Care for Alzheimer’s Act lead sponsors are Sens. Debbie Stabenow (D-Mich.) and Shelley Moore Capito (R-W. Va.) in the Senate and Reps. Darin LaHood (R-Ill.), Brian Higgins (D-N.Y.), Tom Cole (R-Okla.) and Paul Tonko (D-N.Y.)  in the House. Sens. Stabenow and Capito recently led a bipartisan letter to CMMI, urging swift implementation of a dementia care management model using existing authority. 

Caring for an individual living with dementia involves many unique and often challenging elements. Dementia care management is a model of care that enables individuals living with Alzheimer's and other dementia and their caregivers to more seamlessly navigate the health care and social support systems and obtain more timely access to care. 

However, these programs have not developed on their own because health care practitioners would need to provide unreimbursed services without capturing these offsetting savings. To encourage and facilitate the development of dementia care management programs under Medicare, a change in the payment structure is needed. 

As proposed in the Comprehensive Care for Alzheimer's Act, CMS’s GUIDE Model will test an alternative payment for participants who deliver key supportive services to people with dementia, including comprehensive, person-centered assessments and care plans, care coordination, and 24/7 access to a support line. People living with dementia and their caregivers will also have access to a care navigator who will help them access resources, education and services including respite services.

The initiative also aims to improve the health outcomes and caregiving experience of underrepresented individuals and their families through increased access to specialty dementia care. The GUIDE Model will provide financial and technical assistance for developing new dementia care programs targeted to underserved areas.

As we enter a new era of Alzheimer’s treatments, dementia care and support will face new opportunities and challenges. The Alzheimer’s Association’s Dementia Care Navigation Roundtable (DCNR) will take action to improve care for those impacted by Alzheimer’s and other dementia by supporting broad implementation of dementia care navigation. The DCNR will share best practices, disseminate resources, and convene experts from across the health care industry, including systems, clinicians, payers, researchers, and other stakeholders who are committed to advancing the delivery of high-quality, person-centered dementia care navigation. 

On August 1, a new paper was published online in the journal Alzheimer's & Dementia: Translational Research & Clinical Interventions (TRCI), which put forth core guiding principles aimed at creating a national framework for dementia care navigation within or in collaboration with U.S. health systems. This framework, developed by dementia care experts that were convened by the Alzheimer’s Association, will provide an important cornerstone for the DCNR’s work. 

Thank you to AIM advocates and bipartisan congressional champions who worked tirelessly to grow support for the Comprehensive Care for Alzheimer’s Act and advance this initiative to streamline today’s complicated health care maze for people living with Alzheimer’s and other dementia and their caregivers.