The Centers for Medicare & Medicaid Services (CMS) has announced a new voluntary nationwide model designed to support people living with dementia and their unpaid caregivers. It’s called GUIDE, which stands for Guiding an Improved Dementia Experience. The model was announced on July 31, 2023, is set to launch on July 1, 2024, and will run for eight years.

CMS says the GUIDE model “aims to improve quality of life for people living with dementia, reduce strain on their unpaid caregivers, and enable people living with dementia to remain in their homes and communities. It will achieve these goals through a comprehensive package of care coordination and care management, caregiver education and support, and respite services.” The model is said to advance key goals of the National Plan to Address Alzheimer’s Disease, which was established through the bipartisan National Alzheimer’s Project Act (NAPA). The National Plan has sought to optimize the quality of care for people living with dementia and their caregivers while advancing research toward a cure.

CMS Administrator Chiquita Brooks-LaSure observed that “people living with dementia and their caregivers too often struggle to manage their health care and connect with key supports that can allow them to remain in their homes and communities. Fragmented care contributes to the mental and physical health strain of caring for someone with dementia, as well as the substantial financial burden.”

Under Guiding an Improved Dementia Experience (GUIDE), “participants” will be key players for Coloradans

Under the GUIDE model, approved “participants” will fill a role as service coordinators. People with dementia and their caregivers will be assigned to a care navigator who is part of a participant team. This navigator will help persons with dementia and their caregivers access services and supports, including clinical services and non-clinical services such as meals and transportation, through community-based organizations. The model will also enhance access to the support and resources that caregivers need. Unpaid caregivers will be connected to evidence-based education and support, such as training programs on best practices for caring for a loved one living with dementia. Model participants will also help caregivers access respite services, which enable caregivers to take temporary breaks from their care responsibilities.

Coloradans must meet criteria to be “beneficiaries” in Guiding an Improved Dementia Experience

The GUIDE model’s intended beneficiary population are those persons living with dementia who are community-dwelling Medicare fee-for-service beneficiaries, including beneficiaries who are dually eligible for Medicare and Medicaid. In addition to those stipulations, eligible beneficiaries must meet the following criteria:

 Not residing in a long-term nursing home.

 Have a diagnosis of dementia, as confirmed by clinician attestation.

 Have Medicare as their primary payer.

 Are enrolled in Medicare Parts A and B (not enrolled in Medicare Advantage, including Special Needs

Plans and PACE).

 Not enrolled in Medicare hospice benefit.

Requirements for Colorado participants in Guiding an Improved Dementia Experience

The participants in GUIDE — again, this means those who will coordinate and manage care — will establish dementia care programs (DCPs) that provide ongoing care and support to people living with dementia through an interdisciplinary team. These GUIDE participants will be Medicare Part B enrolled providers/suppliers (not including durable medical equipment and laboratory suppliers), who are eligible to bill for Medicare Physician Fee Schedule services and agree to meet the care delivery requirements of the model.

(If a prospective participant can’t meet the GUIDE care delivery requirements alone, they have the ability to contract with other Medicare providers/suppliers to meet the care delivery requirements. These contracted providers/suppliers will be known as “Partner Organizations.”)

To be approved by CMS, all participant programs must have an interdisciplinary care team, including a care navigator, use an electronic health record platform that meets specified standards, and meet other care delivery requirements under GUIDE. At a minimum, the care teams must include the following:

  1. Care navigator who has received required training in dementia, assessment, and care planning.
  2. Clinician with dementia proficiency as recognized by experience caring for adults with cognitive impairment; experience caring for patients 65 years or older; or specialty designation in neurology, psychiatry, geriatrics, geriatric psychiatry, behavioral neurology, or geriatric neurology.

Note: Additional members may be included at the participant’s discretion, such as pharmacists or

behavioral health specialists.

The interdisciplinary care team will deliver services by creating and maintaining a person-centered care plan, which will include details on the beneficiary’s goals, strengths, and needs; comprehensive assessment results; and recommendations for service providers and community-based social services and supports. The care plan will identify the beneficiary’s primary care provider and specialists and outline the care coordination services needed to help manage the beneficiary’s dementia and co-occurring conditions. Participants will also assess and address caregiver needs and include the caregiver as part of the care team. Caregiver services will include ongoing monitoring and support via 24/7 access to a support line.

Participants in Colorado may include both established and new CMS programs

The eight-year model will offer two tracks for participants: one for established programs and one for new programs. The established program track is designed for participants already providing comprehensive dementia care, and these programs should be ready to immediately implement GUIDE’s care delivery requirements. The new program track is designed for participants not operating a comprehensive outpatient dementia care program who are interested in scaling support. These programs must submit a detailed plan for implementing a dementia care program. New programs must not already be operating a comprehensive community-based DCP (dementia care program) and will have a one-year pre-implementation period to establish their programs according to the GUIDE model.

In order to have sufficient model participation and improve enrollment of diverse beneficiaries, CMS will also recruit organizations that do not currently offer comprehensive dementia care or have prior experience with alternative payment models. CMS will support model participation for these organizations by providing technical assistance and learning support as well as a pre-implementation year to prepare for model participation.

Additional aims of the Guiding an Improved Dementia Experience model

Among other aims of the GUIDE model are the following:

  1. Define a standardized approach to dementia care delivery that includes staffing considerations, services for beneficiaries and their unpaid caregivers, and quality standards.
  2. Provide an alternative payment approach to model participants, expected to be a monthly per-beneficiary payment to support a team-based collaborative care approach.
  3. Addressthe 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.
  4. Make provision for respite services by paying model participants for such services. These temporary services might be 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.*
  5. Screen for Health-Related Social Needs (HRSN). Model participants will be required to screen beneficiaries for psychosocial needs and health-related social needs and help navigate them to local, community-based organizations to address these needs.

(* CMS points out that when used over time, respite services have been found to help unpaid caregivers continue to care for their loved one at home, preventing or delaying the need for facility care. The GUIDE model is also designed to reduce Medicare and Medicaid expenditures primarily by helping people with dementia to remain at home, and reducing hospitalization, emergency department use, the need for post-acute care as well as long-term nursing home care. As mentioned above, the model will include a focus on beneficiaries with dementia who are dually eligible for Medicare and Medicaid.) 

How CMS views dementia in Colorado and elsewhere

In announcing the GUIDE model, CMS also noted relevant points such as:

  • Dementia currently affects more than 6.7 million Americans, with 14 million projected cases by 2060. Despite its prevalence, many people living with dementia do not consistently receive high-quality, coordinated care. (The Alzheimer’s Association [AA] estimates 76,000 Coloradans age 65 and older have Alzheimer’s, the most common form of dementia, and 11% of Coloradans age 45 and older have some cognitive decline. AA also estimates there are 160,000 Colorado family members providing care for those with Alzheimer’s.)
  • People living with dementia often have multiple chronic conditions and receive fragmented care, leading to high rates of hospitalization and emergency department visits. They also may have behavioral health symptoms, experience high rates of depression, and often need 24/7 care. The challenges of managing health care, providing constant support, and dealing with the behavioral and psychological symptoms of dementia can present a significant mental, physical, emotional, and financial burden for caregivers. Many of these caregivers are often Medicare beneficiaries themselves. They report high levels of stress and depression, which negatively affect their own overall health and increase their risk for serious illness, hospitalization, and mortality. 
  • The burdens of dementia caregiving disproportionately impact Black, Hispanic, and Asian Americans, Native Hawaiian, and Pacific Islander populations. Black and Hispanic populations have a higher prevalence of dementia, but they also are less likely to receive a timely diagnosis, have more unmet needs, are more likely to experience high caregiving demands, and spend a higher share of their family assets on dementia care. CMS will actively seek out the participation of eligible organizations that provide care to underserved communities for participation in the GUIDE model. CMS will offer a variety of financial and technical supports to ensure that participating safety-net providers can develop their infrastructure, improve their care delivery capabilities, and participate successfully in the model.  

Closing note – CMS and the new Guiding an Improved Dementia Experience

CMS’s plan is to accept letters of interest from participants for GUIDE through September 15, 2023. The model is designed to attract a range of Medicare Part-B enrolled providers and suppliers with the expertise and capabilities to provide ongoing care and support to people living with dementia. As mentioned earlier, GUIDE is set to formally launch on July 1, 2024, and will run for eight years.

CMS Deputy Administrator and Innovation Center Director Liz Fowler said, “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. 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.”