Hospices are seeing the potential for caregiver support improvement in the first year of the Guiding an Improved Dementia Experience (GUIDE) payment demonstration.

Intended to improve care management, caregiver education and respite access for dementia patients and their families, the GUIDE model could have significant impacts, according to Dr. Marny Fetzer, chief medical officer at Hospice of the Chesapeake. 

The payment model could serve as a big step forward in dementia care and allow for deeper examination of what services are most beneficial toward improved outcomes, Fetzer said. Meaningful caregiver support is critical to the equation of safely aging in place at the end of life, she indicated.

“GUIDE funds some education as well as social service and medical care navigation that help both the patient and caregiver [and] also helps pay for caregiver respite,” Fetzer told Hospice News in an email. “Until now, few scalable payment mechanisms existed for these services. GUIDE allows agencies like ours to build on our expertise in home-based hospice and palliative case management and move upstream in the dementia patient’s course. The health care ecosystem is waking up to the importance of caregivers.”

Building dementia care infrastructure

The U.S. Centers for Medicare & Medicaid Services (CMS) unveiled the GUIDE payment model on July 1, 2024 with roughly 390 participating health care organizations. Set to last for eight years, the payment demonstration is designed to improve quality of life for dementia patients and their caregivers by addressing care coordination, behavioral health and functional needs.

CMS’ recently published a GUIDE map showed that participating organizations are predominantly located in Midwestern and Eastern regions.

Many GUIDE participants are hospice and palliative care providers including Hospice of the Chesapeake, AuthoraCare Collective, The Connecticut Hospice, Empath Health, Gilchrist Hospice Care and Andwell Health Partners. Additional providers include Care Dimensions Inc., Delaware Hospice, Hospice of Wake County, Hospice of the Piedmont, the Icahn School of Medicine at Mount Sinai and Sherman Oaks Hospice Care, among others.

Maryland-based Hospice of the Chesapeake’s GUIDE program will launch on July 1. In conjunction, the hospice provider has enhanced its caregiver education and healing arts programs. Hospice of the Chesapeake offers an online training program to family caregivers, emergency responders and health care workers about the physical changes dementia patients experience and ways to build understanding and empathy. The hospice also hosts a caregiver support group and anticipates offering a new virtual reality program to support well-being by the end of this year.

The past few years have brought an important shift in how caregiver needs are viewed and supported by the health care system, Fetzer said. The pandemic helped to demonstrate the tremendous need to normalize and educate the complex physical, emotional and psychosocial aspects of caring for patients with serious illnesses like dementia. Payment models such as GUIDE can help address the mounting concerns of increasing loneliness, isolation and caregiver burden, she stated.

The GUIDE model is serving as a learning opportunity to build a stronger supportive framework, said VIA Health Partners CEO Pete Brunnick. VIA Health is among the new GUIDE participants, beginning its entrance into the model on July 1.

“GUIDE gives us a framework to build upon versus starting from scratch without any form of support,” Brunnick told Hospice News. “It’s an opportunity to learn about a value-based type reimbursement system and understand how many resources we’re allocating to the patient based on their level of service between mild, moderate to severe. It’s knowing how your time is being allocated and paid.”

If delivered as planned, the GUIDE model can have a very positive impact for patients and families, according to Blue Ridge Care COO Altonia Garrett.

Having wider reimbursement streams could help providers better support dementia patients and their caregivers, Garrett indicated. Expanded coverage of care navigation, education and caregiver respite is “incredibly promising and long overdue,” she stated.

Awareness has increased when it comes to the unique needs of dementia patients and their family caregivers. More community-based programs have emerged and more clinicians are employing person-centered care approaches with a growing emphasis on early dementia diagnosis and care planning, Garrett stated. Other trends have included greater integration of social determinants and increasing recognition that race, socioeconomic status, geography and language all play a role in shaping experiences, she said.

The progress made thus far is insufficient to meet demand. Many families are navigating fragmented health care systems and facing burnout without adequate support, especially in historically marginalized communities, Garrett said.

“I’ve witnessed some meaningful shifts in recent years,” Garrett said. “I do see real potential in models like GUIDE to move the needle forward. The GUIDE model introduces an opportunity to provide more coordinated, person- and family-centered care by focusing on what matters most to individuals living with dementia and their caregivers. For too long, caregivers have operated as an invisible backbone of the system, with little to no formal support.”

Moving the needle forward

Though the nation has come a long way in improving dementia care, much more innovation and collaboration is needed to meet rising demand over the next few years, Fetzer indicated.

An estimated 14 million Americans will have some type of Alzheimer’s disease by 2060, nearly double the current amount, reported the U.S. Centers for Disease Control & Prevention (CDC).

Caregivers often struggle to provide good care at home throughout the course of dementia illnesses, she said. When caregivers have difficulty coping or finding resources, patients have higher rates of emergency room visits and hospitalizations and nursing home placement rates also rise, according to Fetzer.

Building a solid infrastructure of dementia support has included identifying new collaborative opportunities for our interdisciplinary palliative and hospice care teams, doulas, bereavement experts and art volunteer professionals, she said. Regular communication and engagement with other hospices, vendor service providers and health systems is also important, as will be development of more strategic partnerships.

Key elements of the GUIDE model include care navigation, caregiver education and training, and respite support, according to Garrett. Having an additional focus on grief and anticipatory grief support would make “profound” differences, she stated. Caregivers often mourn their loved ones well before they pass as their emotional, physical and mental capabilities change throughout their dementia trajectory.

Future payment models should consider ways to grow more resources that are both practical and holistic for patients and their families, Garrett indicated. Caregivers need community-based programs that are affordable and consider the patient and their family unit, with flexibilities that support diverse and untraditional families.

Increasing labor expenses serve as a large obstacle to the evaluation of the GUIDE model, Brunnick said. Providers receive payments based on care level needs on a per patient, per month basis through the model.

GUIDE model payment rates are insufficient to cover the full scope of care needed, particularly when it comes to clinical services, he stated. Hospice providers need to take a minimalist approach financially when considering which services to bill within the GUIDE payment model, Brunnick said.

“For hospice providers, this is a real shift in perspective and changing gears,” Brunnick said. “You’ve got to be very disciplined in what you provide to the patient, because your reimbursement is not that much. That’s a big change for traditional hospice providers. Nurses are expensive, and it’s really going to be a tough game to play, but worth the investment.”