A better roadmap for dementia care with new GUIDE program

By Jeff Kelley

Getting a dementia diagnosis often feels like being dropped into unfamiliar territory without a map. 

Now, thanks to a new Medicare-funded initiative, patients and caregivers at VCU Health won’t have to navigate it alone.

VCU Health and the affiliated Parkinson’s and Movement Disorders Center officially launch the GUIDE model, short for Guiding an Improved Dementia Experience, on July 1. Backed by the Centers for Medicare and Medicaid Services (CMS), the comprehensive dementia care program helps patients and caregivers navigate the challenging diagnosis and journey ahead — and pay for services via Medicare.

Under the GUIDE model, patients with a formal dementia diagnosis such as Alzheimer’s, Lewy body dementia or Parkinson’s with dementia gain access to a care navigator, along with 24/7 support, medication reviews, caregiver education and a personalized care plan integrated into the electronic medical record. In addition, enrolled caregivers are eligible for a $2,500 annual respite voucher to help pay for temporary relief services, from in-home care to adult day programs. 

But dementia care is nothing new to VCU. 

Originally seeded through a grant from the federal Administration for Community Living, VCU began training dementia care navigators three years ago to help patients and families manage the complex needs associated with the disorders. Training for dementia navigators was developed by a team co-led by VCU Department of Gerontology associate dean for research Faika Zanjani, Ph.D., nurse practitioner Lana Sargent, Ph.D. and PMDC director Brian Berman, M.D.

“Having this training in place already made us uniquely prepared to scale up with GUIDE and move toward a truly health system-wide approach,” says Sargent, a co-director of VCU’s GUIDE program who also serves as associate dean in the Office of Practice and Community Engagement at the School of Nursing. 

GUIDE expands VCU’s navigator model, offering a suite of services aimed at improving quality of life, reducing caregiver strain and cutting avoidable healthcare costs — and pays for it with federal funding. VCU is one of 11 GUIDE programs in the state, offered by both health systems and smaller providers. 

Over the past year, Sargent and team have worked to ensure the infrastructure was in place to support system-wide dementia care — developing intake systems, configuring electronic medical records and coordinating across departments like geriatrics, neurology, billing and IT. “It takes a lot to get a program like this started. You have to build everything from the ground up,” she says. 

Peter A. Boling, M.D., division chief in the Division of Geriatric Medicine, worked with the GUIDE team to bring the CMS program into the health system.

GUIDE is designed to work across departments and specialties, as multidisciplinary care is key for patients with complex needs. “The goal is to ensure the program is accessible to patients no matter where they enter the health system, reflecting the reality that patients don’t exist in one space — they exist across them, and need a health system that follows them,” Sargent says.

For PMDC patients, many of whom start with movement disorders but develop dementia as their disease progresses, GUIDE provides a new level of continuity and support that has long been lacking.

“Before GUIDE, families were left to figure it out on their own,” Sargent says. “Now, they have a roadmap — and someone taking that path with them.”