A Step Forward in Dementia Care in the US

A new payment model will reimburse participants for care coordination and other support services to Medicare beneficiaries with dementia and their caregivers.

Older adult, health care provider and caregiver

On July 31, the US Centers for Medicare & Medicaid Services took a significant step towards making quality dementia care navigation broadly available across the United States with the release of the GUIDE payment model, designed to support Care Ecosystem and similar models of comprehensive, collaborative dementia care. 

Expanding Care to Include the Caregiver

The Care Ecosystem—a project launched by UCSF’s Memory and Aging Center in 2013 and partially funded by GBHI— provides personalized, cost-efficient care navigation services to people living with dementia and their caregivers. Starting in July 2024, health systems offering this care model will receive a lump sum for all Medicare Fee-for-Service (FFS) patients enrolled. Kate Possin, GBHI faculty member, Professor of Neurology at the UCSF Memory and Aging Center, and Program Director of Care Ecosystem, was part of the advisory team, led by the Alzheimer’s Association, to develop and propose to Medicare an advanced payment model for dementia care navigation. 

“We realized that for this payment model to be meaningful, it needed to address and prioritize the needs of caregivers,” said Possin. “But this was a radical concept to suggest expanding patient-centric health care to include the family caregiver as a recipient of the care.”

The Care Ecosystem is designed to enable health systems and clinics to provide dementia-capable care to the growing population affected by dementia and their caregivers. This telephone and web-based intervention was developed and studied across California, Nebraska, and Iowa (United States) via an award from the Center for Medicare and Medicaid Innovation from 2014–2018 and continues to be studied with funding from the National Institute for Health. It has demonstrated significantly promising results for providing increased levels of important support services for dementia caregivers and patients.

“The Care Ecosystem advances global dementia reduction by prioritizing caregivers and driving policy change, exemplifying GBHI's commitment to real-world impact for those in need,” said Victor Valcour, Site Director, GBHI, UCSF. 

Care Ecosystem Dementia Specialist Team

The Care Ecosystem model includes care team navigators (CTNs); clinicians with dementia expertise (nurse, pharmacist, social worker); care protocols; and curated information and resources. Figure by Caroline Prioleau.

Embracing a Collaborative Approach

The Care Ecosystem takes a team-based approach in which advanced-practice nurses, pharmacists and social workers who have dementia expertise collaborate with care team navigators (CTNs). These CTNs are unlicensed, but trained, and caregivers are encouraged to call them whenever a question or concern arises related to dementia care. 

The program is doing this with some relatively simple technology by today’s standards: regularly scheduled, personalized phone calls, along with directing caregivers to important web-based services that can help with the challenges and issues they customarily face. 

The Care Ecosystem has served as an important training opportunity for Atlantic Fellows for Equity in Brain Health who can participate in ongoing Care Ecosystem clinical services and research. This type of care model is ripe for adaptation to many regions where our fellows work, including regions with lower resources for medical services. As published by Atlantic Fellow Talita Rosa, the Care Ecosystem can be delivered at a low cost.

With the endorsement of GUIDE, Medicare is embracing a concept that emphasizes that dementia care is about the dyad: the person with dementia and their caregiver together. For instance, research has shown if a caregiver is depressed, the patient with dementia uses more emergency medical services. Following the announcement of GUIDE, the Alzheimer’s Association published key principles of effective dementia care navigation, co-authored by UCSF’s Care Ecosystem Clinical Director Sarah Dulaney

To make it as easy as possible for new health systems to set up a care navigation program for dementia, the Care Ecosystem team makes a care navigator training program and care protocols available for free here: memory.ucsf.edu/care-ecosystem.