Approximately 6.9 million adults aged 65(Opens in a new window) and older are living with dementia. Dementia can make many of the day-to-day skills we take for granted — things like memory, reasoning, judgment and communication — challenging or even impossible to do. Not only can this disease overwhelm, confuse and frustrate the affected person, it also can take a huge toll on caregivers' emotional, mental and physical well-being.
To support the families of dementia patients, the Centers for Medicare and Medicaid Services (CMS) has created a voluntary resource initiative called Guiding an Improved Dementia Experience, or the GUIDE program model(Opens in a new window). It's a much-needed resource: As the Baby Boomer generation ages, national dementia rates are on the rise. Alzheimer's disease — the most common form of dementia — impacts an estimated 6.7 million older adults(Opens in a new window) in the U.S. and is expected to double by 2060.
Below, we'll explain how the GUIDE program works and its eligibility requirements.
What Is the GUIDE Program?
The GUIDE program launched in July 2024 and is currently slated to run for eight years. It provides care coordination and management, caregiver education and support, and an annual cap of funds that can be put toward respite care services for dementia patients and their caregivers.
The GUIDE program commits to:(Opens in a new window)
- Define and establish a standardized care delivery model that benefits people with dementia and their caregivers.
- Dispense a monthly per-beneficiary payment for caregivers to support a team-based, collaborative care approach.
- Provide caregiver training and support services to reduce guesswork, improve patient outcomes and keep people in their homes and communities longer.
- Provide a $2,500 annual cap for respite care to unpaid caregivers to alleviate burnout.
- Conduct screenings to identify psychosocial and health-related social needs (HRSNs) and navigate participants to local, community-based organizations that can address them.
Despite the prevalence of dementia, many patients do not consistently receive high-quality, coordinated care. This can result in poor outcomes, including high rates of hospitalization, emergency visits and post-acute care. Additionally, co-occurring conditions of dementia such as depression and other behavioral and psychological symptoms are not always well-managed.
GUIDE offers a medically managed, non-hospitalization approach to at-home dementia care(Opens in a new window). It aims to improve the quality of care for people with dementia(Opens in a new window) while prioritizing the needs of caregivers.
Benefits for Caregivers
Dementia caregivers may experience high stress, as well as emotional and physical fatigue over time. GUIDE builds off the National Plan to Address Alzheimer's Disease(Opens in a new window) to generate a useful and reliable guide for unpaid caregivers.
"It's been apparent for decades that unpaid caregiver burnout and fatigue have deleterious effects for both the caregiver and the person they're caring for. The GUIDE program is the result of a decades-long push by multiple, bipartisan U.S.-based dementia advocacy groups to address this need," explained Adam Perry, M.D., an early-chort CMMI GUIDE Model Participant and founder of Healthspan Partners of Southwest Florida (SWFL).
The GUIDE program offers the following benefits for caregivers:
Supports Caregiver Well-Being
"Dementia is a family disease. Regardless of who in the family has the disease, it affects everyone. Caregivers require new benefits and more support than they have traditionally received in the past," said Dr. Perry, who partners with BrightStar Care agencies to deliver the GUIDE Model to thier clients and communities. BrightStar Care is an established, in-home care provider specializing in skilled nursing(Opens in a new window), memory care(Opens in a new window) and respite support for families dealing with dementia.
Caring for a loved one with dementia can often become all-consuming. Unpaid family caregivers may find themselves putting their own well-being on hold. The GUIDE program provides payment for GUIDE Respite Services(Opens in a new window) provided in three types of settings up to an annual cap of $2,500 per beneficiary. These services temporarily relieve caregivers of their duties so they can get time to themselves and avoid burnout.
Provides Education and Access to Resources
Another important pillar of the GUIDE model is caregiver education and professional support. The program provides a comprehensive dementia caregiver's guide to services available in the community. This can help alleviate caregiver stress and supply practical knowledge caregivers can use to enhance quality of life for their loved one.
"Personalized care navigation is the foundation of the GUIDE Model. The GUIDE benefit connects every family with a trained dementia care navigator to support caregivers, coordinate care and connect to needed communicty resources," Dr. Perry said.
Offers 24/7 Support
Caregivers have access to a 24/7 helpline ( they can use for any reason, as well as connections to community-based providers. This can make potential emergency situations feel less uncertain or stressful. In addition, patients can get medical oversight and assessment without leaving the home via telehealth visits with nurses or doctors. This can provide much-needed emotional relief for caregivers, who may not always know what to do or how to cope in certain situations.
Benefits for Individuals with Dementia
A key driver of the GUIDE program is to enable people living with dementia to age in place without putting added strain on unpaid caregivers. "Being able to stay at home, where your memories were made, can be comforting and cost effective. Assisted living facilities require large down payments, which can lead to financial stress for caregivers. Of course, the flip side is keeping dementia patients at home places the burden on unpaid caregivers, unless their needs are also systematically addressed," said Lori Cabbage, Senior Vice President of Business Development at BrightStar Care.
The GUIDE program makes aging in place easier for those with dementia and their caregivers by connecting them with a Care Navigator. This person can recommend resources and coordinate access to available GUIDE and non-GUIDE services and support — things like meals, transportation, education and recreation. As the Care Navigator gets to know the family, they can facilitate more personalized care options, such as arranging for medical and other services to come directly to the home.
Dementia symptoms, such as confusion and agitation, may worsen in unfamiliar surroundings, such as doctor's offices and medical facilities. The familiarity of home can be a comfort to those with dementia, while enabling caregivers to control the environment and reduce potential triggers, such as loud noises and bright lighting. The GUIDE program provides access to at-home services, from medical providers to therapists to meal delivery and other types of services. This not only reduces barriers to care, it also alleviates the stress that can come from leaving home.
A GUIDE-appointed Care Navigator makes it easier for those with dementia and their families to age in place by:
- Providing comprehensive health assessments and creating personalized care plans based on individual needs
- Coordinating home safety assessments and assistive technology recommendations to make the living environment safer and more comfortable
- Assigning a comprehensive and unified care team
- Providing access to a 24/7 telephone support line
- Facilitating caregiver education, training and support
- Coordinating non-clinical services such as transportation and meals
The Role of Health Care Providers in the GUIDE Program
"GUIDE is designed to be a longitudinal, relationship-based program. Care Navigators and home-based providers are selected for their extensive experience and undergo specialized training in caregiver support and home-baed care," said Dr. Perry.
To become a certified health care provider with the GUIDE program, specialists such as geriatricians and neurologists must undergo a rigorous application process. Eligibility requirements(Opens in a new window) include Medicare Part B-enrolled providers and suppliers, excluding durable medical equipment (DME) and laboratory suppliers, who are eligible to bill under the Medicare Physician Fee Schedule.
Physicians can refer eligible patients and caregivers to the program. Once enrolled, GUIDE health care providers collaborate extensively with the patient's current medical team, such as primary care physicians and specialists. This high level of collaboration and oversight — which includes early interventions and tailored medical plans — is designed to reduce things like emergency room visits and hospital readmissions.
Accessing the GUIDE Program
Before patients and caregivers can enroll in the GUIDE program, they must meet specific eligibility requirements(Opens in a new window) to qualify.
These include:
- Obtaining an official dementia diagnosis with any type of dementia at any stage from their PCP or specialist
- Enrolling in " traditional" Medicare (Part A or Part B)
- Having Medicare as your primary payer
Restrictions include:
- Cannot elect Medicare Hospice benefits
- Cannot be a long-term nursing home resident
- People enrolled in Medicare Part C (Medicare Advantage) and those currently enrolled in a PACE program are not eligible for GUIDE.
To enroll in the GUIDE program, a patient or caregiver must contact a GUIDE certified provider in their community. If you're currently under medical care, your physician may already have this certification. If not, you can access a nationwide GUIDE participant list of providers through the CMS website.
Your GUIDE provider will explain the program to you and your loved one in more detail and answer any questions you may have. If you agree to receive services, they will file the necessary paperwork for you with Medicare. Keep in mind that participation in GUIDE is voluntary. If you decide you do not want to receive services, there is no obligation to do so.
The Future of the GUIDE Program
"As the last members of the Baby Boomer generation age up, there's a 'silver tsunami(Opens in a new window)' coming our way. Thousands of families will find themselves in need of dementia education and respite support," said Lori Cabbage. "The overarching goal of the GUIDE program is to meet the needs of these families with high-quality dementia care that provides comfort and caring — and that keeps people with dementia thriving in their homes and communities."
To learn more about GUIDE, email the GUIDE model team at GUIDEModelTeam@cms.hhs.gov or contact a BrightStar Care representative. To find out if BrightStar Care is available in your state, use our ZIP Code finder.
Dementia Is a Family Disease
Dementia can affect anyone and take a massive toll on families. BrightStar Care® is here to support your caregiving efforts for loved ones who have or are showing early signs of dementia. Whether you're looking for in-home care services(Opens in a new window) or assisted living for your loved one or a reliable medical staffing partner for your organization, our experienced local care team members are ready to help. Find a location(Opens in a new window) (Opens in a new window)near you, contact us online or call 866-618-7827 to learn more about how BrightStar Care® offers A Higher Standard®.