Dementia Care Navigation: Building Toward a Common Definition, Key Principles, and Outcomes

Authors
Beth A. Kallmyer
David Bass
Matthew Baumgart
Christopher M. Callahan
Sarah Dulaney
Leslie C. Evertson
Sam Fazio
Katherine S. Judge
Quincy Samus
Peer-Reviewed Article
April 2023

Headline

An expert panel proposed key principles for designing care navigation programs for persons living with dementia and their caregivers.

Context

Patient or care navigation has gained popularity in recent years across complex care populations and there is mounting evidence that this approach improves outcomes for persons living with dementia (PLWD) and their caregivers. These programs connect patients and caregivers with trained patient navigators who work with them to identify goals and overcome barriers to improved health and quality of life outcomes. However, there is no widely agreed upon definition to describe dementia patient navigation or guidelines for program design — a gap in the field, which the Alzheimer’s Association sought to address by convening an expert workgroup in March 2020. This article reports on the outcomes of this convening.

Findings

The expert workgroup identified key principles for the delivery of dementia care navigation, including: (1) person- and family-centered collaboration; (2) cultural responsiveness and equity; (3) defined care team roles; (4) focus on addressing medical, legal, financial, emotional, and other barriers faced by PWLD and their caregivers; (5) empowering, solution-focused, and strengths-based coaching and education; (6) responsiveness to the family unit as defined by the patient; and (7) evidence-based processes and protocols. The workgroup also recommended that future evaluations of dementia care navigator programs incorporate holistic outcome measures that reflect patient and caregiver well-being, moving beyond traditional clinical and health service utilization metrics.

Takeaways

The key principles and additional recommendations for dementia care navigation programs presented by the expert workgroup offer valuable guidance for health care organizations seeking to implement or enhance existing programs. This guidance may also be useful for payers or policymakers establishing reimbursement requirements or other guidelines for dementia care navigator services.      

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