A new federal model for supporting people with dementia and their unpaid caregivers launched this summer and appears likely to prove influential to dementia care in the United States.
The Guiding an Improved Dementia Experience (GUIDE) Model is a voluntary nationwide model that is set to run for an initial pilot period of eight years. According to the Centers for Medicare & Medicaid Services, the GUIDE Model “focuses on comprehensive, coordinated dementia care and aims to improve quality of life for people with dementia, reduce strain on their unpaid caregivers and enable people with dementia to remain in their homes and communities.”
The model centers on using Medicare payments to provide a comprehensive package of care coordination and management, caregiver education and support, and respite services. The model was formed based on a 2023 Executive Order by the Biden Administration to consider developing a new health care payment and service delivery model that was focused on dementia care and would include family caregiver support, including respite care.
As CMS noted, those suffering with dementia frequently contend with multiple chronic conditions and receive fragmented care for them, leading to high rates of hospitalization and ER visits. They also may have behavioral health symptoms and often require 24/7 care. That puts a mental, physical, emotional and financial strain on caregivers, disproportionately affecting those from minority populations.
“The GUIDE Model will set a standard approach to care, including 24/7 access to a support line, as well as caregiver training, education and support services,” according to CMS. “This standard approach will allow people with dementia to remain safely in their homes for longer by preventing or delaying nursing home placement and improve quality of life for both people with dementia and their unpaid caregivers.”
A focus on nonprofessional caregivers
Dr. Ara Sayabalian, chief clinical officer for Total Incontinence Management and a lecturer in the University of Southern California Leonard Davis School of Gerontology, said GUIDE will likely be extended beyond the initial eight-year period if the resulting data from the program shows that support for caregivers and the integration of care coordination leads to cost efficiencies and better support for patients, such as through measurements like reductions in hospitalizations and emergency visits.
For instance, Sayabalian said his area of specialty is reducing hospitalizations due to incontinence. He said approximately 80% of patients with dementia have levels of bladder leakage, which can lead to major health costs due to complications such as falls or a UTI (which can turn septic, leading to fatal results). Improved education and resources for caregivers could limit those instances, he said.
“The goal is to reduce hospitalizations and help with cost efficiencies,” Sayabalian said. “If the GUIDE program is adding resources to help the caregiver care for the individual better at home, that means that individual is not going to be hospitalized as much – is not going to be going to the emergency room as much – because the caregiver has been educated.”
Among other tools, caregivers who have received support through GUIDE should be able to better understand dementia patients and their expressions of need, such as if they are feeling frustration, pain, boredom, loneliness or confusion but are struggling to communicate that feeling verbally. If a caregiver has not been taught to recognize those expressions of need and their root causes, it can lead to escalating challenges and ultimately serious incidents, Sayabalian said. If a caregiver can recognize those expressions and understand the root cause of the patient’s feeling, then they can work to address it and mitigate incidents such as hospitalizations or ER visits, Sayabalian said.
GUIDE’s emphasis on providing breaks for caregivers is a key component of the model that should not be overlooked.
“I think people need to understand the importance of a caregiver’s morale and mindset, the fact that they need respite and the fact that they need training,” Sayabalian said. “This is exactly what GUIDE is and what it hopes to do.”
A multipronged approach
According to CMS, the GUIDE Model aims to address the key drivers of poor-quality dementia care in five ways:
- Defining a standardized approach to dementia care delivery for model participants. This includes staffing considerations, services for people with dementia and their unpaid caregivers, and quality standards.
- Providing an alternative payment methodology to model participants. CMS provides a monthly per-beneficiary payment to support a team-based collaborative care approach.
- Addressing unpaid caregiver needs. The model aims to address the burden experienced by unpaid caregivers by requiring model participants to provide caregiver training and support services, including 24/7 access to a support line, as well as connections to community-based providers.
- Respite services. CMS pays model participants for respite services, which are temporary services provided to a beneficiary in their home, at an adult day center, or at a facility that can provide 24-hour care for the purpose of giving the unpaid caregiver temporary breaks from their caregiving responsibilities.
- Screening for Health-Related Social Needs. Model participants are required to screen beneficiaries for psychosocial needs and health-related social needs (HRSNs) and help navigate them to local, community-based organizations to address these needs.
“As millions of Americans already know, dementia can devastate people and their families in many ways. The GUIDE Model aims to mitigate the significant challenges of coordinating and managing health care and community-based supports and improve quality of life for patients and caregivers alike,” said Liz Fowler, CMS deputy administrator and innovation center director, in a press release. “By offering caregiver support, respite services, and improved access to community-based supports, the GUIDE Model aims to keep people living with dementia safer and in their homes longer.”
Senior living’s potential role
Sayabalian said it remains to be seen how the senior living industry and GUIDE will interact and overlap. “Where will protocols and priorities differ and how will that be resolved?” he said.
“At the end of the day, what is the assisted living memory care community doing? They’re caring for the resident, their hygiene, feeding, nutrition, medication management, fall prevention, all these things that the assisted living memory care community is doing,” Sayabalian said. “But what does GUIDE do? They are trying to do the same things for dementia care residents. So there’s definitely overlap. And the question is, how much overlap is there going to be, and at the end of the day, whose protocol is going to be followed? Is it the GUIDE protocol? Is it the care manager that GUIDE has potentially placed inside a community? Is it the nurse of the community? That’s where I think that things need to be open for discussion.”
Eligible model participants are Medicare Part B-enrolled providers eligible to bill for Medicare services and that provide, or will provide, ongoing care to people living with dementia. Eligible organizations include accountable care organizations, home health and hospice agencies, Programs of All-Inclusive Care for the Elderly, and physician practices.
According to McKnight’s Senior Living, additional long-term care providers and other health care providers can participate as partner organizations by contracting with another Medicare provider/supplier to meet the program care delivery requirements. “Assisted living residents who are Medicare beneficiaries may be part of the model,” according to the publication.
Knute Nelson | Walker Methodist is among the senior living providers announced as participants in the GUIDE Model pilot, starting next year.
“This initiative will enable us to enhance our care coordination, deliver comprehensive support services and ultimately improve the quality of life for those we serve,” said Lindsey Sand, vice president of population health for Knute Nelson/Walker Methodist, in a press release. “We are committed to leading innovative approaches in dementia care and ensuring our clients and their families receive the compassionate care they deserve.”
Lifespark is also among those selected to participate in the model, and Matt Kinne, the company’s chief operating officer, told McKnight’s Senior Living “that he views senior living as the ‘beachhead’ opportunity to get into GUIDE, ultimately expanding it to support people no matter where they live.”
“GUIDE, for us, the way we view it, it gives our team and the constituents we do serve more opportunity to get connected to community resources to support folks in new, unique ways,” Kinne said. “Our mission is to really deconstruct the sick care system that doesn’t serve frail elders well.”
Lifespark, which will launch its GUIDE program next summer, told McKnight’s Senior Living that it would use the lessons it learns from implementing GUIDE for its senior living residents to serve others outside its residences who are Medicare Advantage enrollees living with dementia.
“Our opportunity is not only to have support groups and provide support for families and people living with dementia in the community, but to expand our offers out to the broader community,” Kinne told McKnight’s.
Possible impact
GUIDE is modeled on some existing programs linked to academic institutions, such as those at UCLA, UC-San Francisco, and Emory and Indiana universities, according to NPR. Dr. David Reuben, the director of UCLA’s Alzheimer’s and Dementia Care program, told NPR that he “wept” when he heard about GUIDE “because of all of the people around the country who are going to get the services they need paid for.”
The UCLA model, for instance, serves around 1,000 people right now, Reuben told NPR, but without full payment from Medicare or other insurers, the program has been operating at a loss. With Medicare now paying for comprehensive care in this manner, experts told NPR that it could lead to more care providers adopting components of the program.
“Where goes Medicare, goes the rest of the country,” Fowler told the outlet. “That’s great news, because it means an expansion of this approach to care.”
Rani Snyder, vice president of programs at the John A. Hartford Foundation, a philanthropy focused on the health of older adults, told Fortune that approximately 80,000 Medicare beneficiaries and their family caregivers will be helped by GUIDE participants in the first two years of the program.
According to the Fortune article, GUIDE had “energized experts in dementia and caregiving.”
“What’s exciting about GUIDE is that it incentivizes a different kind of care — and payment for that care,” Snyder told the magazine. “This is comprehensive and focused on both the medical and non-medical needs of a person living with dementia. Someone in a GUIDE program can expect valuable assistance that’s often absent today, like respite care, a home visit to assess safety risks or connections to community-based programs that offer transportation and meals.”
Nexus Insights, a think tank advancing the well-being of older adults, published a 2022 paper calling for a system of care navigators similar to GUIDE, according to Fortune. Bob Kramer, the organization’s founder, said GUIDE is “the most prominent and promising thing the government is doing” to recognize the need for meaningful care coordination and pay for it.
“GUIDE is a new approach to how Medicare will pay for the care of people living with dementia,” said CMS Administrator Chiquita Brooks-LaSure, in a press release. “The GUIDE participants are envisioning new ways to support not only people living with dementia, but also to reduce strain on the people who care for them, so that more Americans can remain in their homes and communities, rather than in institutions.”
Guiding an Improved Dementia Experience: The GUIDE Model in Senior Living
On July 1, 2024, CMS Launched the GUIDE Model. This voluntary, nationwide model aims to improve the quality of life for people with dementia through high-quality, coordinated care. This year at the Senior Living Leadership Summit, the session Guiding an Improved Dementia Experience: The GUIDE Model in Senior Living will provide an in-depth look at how the GUIDE approach drives better outcomes among the dementia population. Attendees will learn how to implement the GUIDE Model to foster a more supportive environment for residents, families, and caregivers. Attendees will walk away with practical tools that ultimately lead to better outcomes and a more person-centered care approach in memory care settings. The Senior Living Executive Summit takes place November 18-20, 2024, in Austin, Texas. Learn more and register today!
