CHICAGO, August 1, 2023
- Roundtable will convene experts across the healthcare industry to establish consistent processes and protocols for dementia care navigation
- Alzheimer’s Association workgroup outlines guiding principles for dementia care navigation in new journal paper
— The Alzheimer’s Association announced today it is launching the Dementia Care Navigation Roundtable (DCNR) to drive access and support for people newly diagnosed and living with dementia. The recent advancements of new Alzheimer’s treatments are expected to result in more people seeking care and services. The DCNR will support broad implementation of dementia care navigation by convening experts, sharing best practices, and disseminating resources. The DCNR will include experts from across the healthcare industry, including systems, clinicians, payers, researchers, and other stakeholders who are committed to advancing the delivery of high-quality, person-centered dementia care navigation.
“The need to develop expert consensus around dementia care navigation is really critical to ensure people diagnosed and living with dementia have the care and support they need when they need it most,” said Kristen Clifford, chief program officer, Alzheimer’s Association. “The Alzheimer’s Association has long been a leader in convening key stakeholders in addressing the challenges most important to the families we serve. The roundtable offers an incredible opportunity to develop the future roadmap for dementia care navigation in this country, community by community.”
In recent years, several U.S. dementia care navigation programs have been developed and assessed — most demonstrating important benefits for people living with dementia (improved outcomes, reduced emergency room visits, lower hospital readmissions, shorter delays in long-term care placement and decreased depression, illness, strain, and behavioral symptoms) as well as for their caregivers (decreased depression, burden and unmet needs).
“Dementia care navigation programs have shown they can be a huge benefit to people living with dementia and their caregivers. These programs improve care, reduce costs and enhance the overall quality of life,” Clifford said. “Unfortunately, these programs are not wide-spread across the country. Our roundtable will be convening experts from across health care to develop workable strategies and solutions that can be implemented in more communities to benefit more families navigating the complexities of Alzheimer’s and other dementia.”
New Journal Paper Outlines Guiding Principles for Dementia Care Navigation
A new paper
published online Tuesday in the journal Alzheimer's & Dementia: Translational Research & Clinical Interventions (TRCI)
will provide an important cornerstone for the DCNR’s work. In the paper, dementia care experts, convened by the Alzheimer’s Association, put forth core guiding principles
aimed at creating a national framework for dementia care navigation within or in collaboration with U.S. health systems.
The new paper defines dementia care navigation as “a program that provides tailored, strengths-based support to persons living with dementia and their care partners/caregivers across the illness continuum and settings to mitigate the impact of dementia through collaborative problem solving and coaching
The expert workgroup outlined seven essential principles for dementia care navigation, which emphasize person-centered care. According to the workgroup, dementia care navigation should:
- Be person- and family-centered to ensure collaboration and enhance engagement.
- Be culturally responsive and address disparities in access to health care and support services.
- Include well-defined roles and responsibilities for all members of the dementia care navigation team.
- Address barriers relating to medical, legal, financial, emotional and other domains facing the person living with dementia and their care partners.
- Provide coaching, education, and coordination in a manner that is empowering, solution-focused, and strengths-based.
- Focus on the family unit as defined by the person living with dementia.
- Ensure processes and protocols are evidence-based.
“Given the complexities of dementia and the challenges associated with navigating today’s health care system, the time is ripe to put forth a universal framework for dementia care navigation,” said Sam Fazio, Ph.D., one of the paper’s authors and senior director of quality care and psychosocial research, Alzheimer’s Association. “We believe the definition, principles and outcomes measures our workgroup has outlined offers important cornerstones to guide the development and implementation of future dementia care navigation programs across the country.”
In the paper, the workgroup also calls for improving the current process and outcome measures being used to evaluate dementia care improvement efforts. Specifically, the expert panel expressed frustration that traditional outcome measures have a limited capacity to capture the true impact of dementia care navigation and that, in the United States, no outcome measures specific to dementia have been validated or adopted.
“Traditional dementia outcome measures tend to look at such things as stress, strain and isolation,” said workgroup member, David M. Bass, Ph.D., senior vice president and senior scientist, Benjamin Rose Institute on Aging. “Our workgroup is encouraging more person-centered measures within the context of dementia care navigation, looking at both the person living with dementia and their care partner’s ability to participate in daily living in ways that are meaningful to them. The outcome measures may be unique to the individual and the care partner. They can be identified and studied so we can truly tell if the interventions are enhancing the quality of life.”
Earlier this week, the Alzheimer’s Association welcomed the announcement of a new Centers for Medicare & Medicaid Services (CMS) initiative to improve the way dementia care is delivered for people living with Alzheimer’s disease and other dementia (read statement
The new CMS Guiding an Improved Dementia Experience (GUIDE) Model
, will examine several care delivery improvements, including providing people with dementia and their caregivers access to dementia care navigators. The new model will also 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.
“With recent advancements of new treatments for Alzheimer’s, you are seeing growing momentum to build a healthcare infrastructure that is better prepared to care and support those living with Alzheimer’s and other dementias and their caregivers,” Clifford said. “The Alzheimer’s Association intends to be a critical player in this ongoing work.”
The Alzheimer’s Association said it plans to convene its initial meeting of the DCNR in early 2024. Individuals and organizations interested in learning more about roundtable participation can email: firstname.lastname@example.org
About the Alzheimer's Association
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia®. Visit alz.org or call 800.272.3900.