For those living with dementia or caring for someone who sometimes feels overwhelmed. Questions swirl: Where do we begin? Who will coordinate all these doctors, services, and supports? Where can I find help when things get hard? GUIDE Model (Guiding an Improved Dementia Experience), launched by the Centers for Medicare & Medicaid Services (CMS), offers one path forward. It’s a voluntary Medicare program that provides people living with dementia and their caregivers with a trusted care team, dedicated care navigator, caregiver education, respite services, and coordination of medical and community supports.
Background
- Purpose: Test whether paying community dementia care programs to deliver a standardized package of dementia-specific, longitudinal services (care navigation, caregiver education/support, respite, and care coordination) can improve quality of life for people with dementia, ease caregiver burden, and reduce avoidable Medicare/Medicaid spending.
- Duration: An 8-year voluntary model running from July 1, 2024, through June 30, 2032, and offered nationwide.
- History: GUIDE is built on decades of dementia-care research (Care Ecosystem, MIND at Home, and others) showing that care navigation, coordinated home-based programs, and caregiver support can improve outcomes.
Eligibility
To receive GUIDE services, a person must meet several conditions:
- Have dementia (any stage), as confirmed by a clinician employed by the GUIDE program.
- Be enrolled in Medicare Parts A and B (Original Medicare) and have Medicare as the primary payer. GUIDE is not for Medicare Advantage enrollees or PACE (Program of All-Inclusive Care for the Elderly) participants.
- Not currently on Medicare hospice benefit.
- Not be a long-term nursing home resident (community-dwelling settings are eligible: private homes, assisted living, group homes, etc.).
- Enrollment into a GUIDE program is voluntary.
Eligibility for respite under GUIDE:
- Live in the community (not in a long-term nursing home)
- Have an identified caregiver.
- Fall into the moderate or high complexity tier.
Services GUIDE Provides
GUIDE defines a standardized package of services dementia care participants (DCPs) must offer. Important items beneficiaries and caregivers commonly ask about:
- Comprehensive assessment & individualized care plan: A trained team performs a comprehensive assessment and builds a care plan tailored to you; reassessments happen at least annually.
- Care Navigator Access and Support: Your main point of contact. The care navigator helps you navigate and coordinate medical care and community services (meals, transportation, home safety, behavioral support).
- 24/7 access: Access to a team member or helpline for any questions or to receive support is required.
- Caregiver education & support: Evidence-based caregiver training, support groups, and direct access to the care navigator (for guidance, coaching, and problem solving).
- GUIDE Respite Services: Temporary relief for caregivers (in-home aides, adult day centers, or short facility stays) up to an annual cap. The model allows GUIDE programs to bill up to $2,500 per year for respite services.
- Alone-at-home safety and home supports: CMS intends to provide up to $1,000 per beneficiary per year for home safety modifications and conditional telehealth flexibilities for home-based care when needed.
Annual Care Plan
Under the GUIDE Model (Guiding an Improved Dementia Experience), every person receives a comprehensive assessment and an individualized care plan tailored to their specific needs. This is a core part of the program, and it confirms eligibility for services such as respite care.
Annual Comprehensive Assessment
Once enrolled, the person living with dementia and their caregiver will meet with the GUIDE care team for a comprehensive assessment. This assessment is performed at least once a year and whenever the patient’s needs change significantly.
- Medical and cognitive status to confirm a current diagnosis of dementia and assess care needs.
- Activities of Daily Living such as bathing, dressing, and eating.
- Behavioral and psychological symptoms (e.g., agitation, anxiety, or mood changes).
- Caregiver capacity and stress level, using tools such as caregiver strain or burden scales.
- Social and community support needs, including access to meals, transportation, and respite.
- Safety and living environment.
This information helps the care team understand the whole picture of the person’s and caregiver’s situation.
Tip: If you are a caregiver, be honest during the assessment about the amount of stress you face each day. This will affect the amount of care that the provider is required to provide.
Individualized Care Plan
Based on the assessment, the GUIDE team, typically led by a care navigator and a clinical lead, creates a personalized care plan tailored to the individual living with dementia and their caregiver.
The care plan will:
- Identify the primary caregiver and confirm their role.
- Document the person’s diagnosis of dementia.
- Record the caregiver’s level of burden or need for support.
- Recommend specific services, such as education, support groups, or respite care.
- Include measurable goals to monitor progress and outcomes.
The plan is shared with the patient/caregiver and updated regularly, especially if the person’s condition or caregiving needs change.
Not All Guide Programs are created equally
While the GUIDE Model (Guiding an Improved Dementia Experience) sets standards for services such as care navigation, comprehensive assessments, and respite, it’s important to note that each dementia care program (DCP) may offer different resources, staffing, and expertise.
Interdisciplinary Team Composition Varies
Not every GUIDE program has the same combination of medical team members and specialists. Some programs may include primary care providers with prescribing privileges, allowing them to manage medications directly within the program. Others may coordinate with your existing medical providers for prescriptions, which can add time and steps to care management and coordination.
Tip: Ask your potential GUIDE program which specialists are on the team and whether they can directly prescribe medications or manage changes to your treatment plan.
Experience, Knowledge, and Training of Care Navigators
The care navigator is the person you will interact with most frequently. In my experience, navigators’ backgrounds and training can significantly impact the quality of care they provide.
- Navigators are typically more capable if they have backgrounds in nursing, social work, or dementia care and understand complex behavioral or medical issues.
- Specialized training in dementia care, caregiver coaching, and local community resources can make a big difference in your navigator’s ability to provide support.
Tip: Ask potential programs about their care navigator’s background, training, and how they communicate with the team and with families. A skilled navigator can make care smoother, reduce stress, and help you feel confident in the care plan.
Questions to ask:
- “How do I get started with your GUIDE program?”
- “Do you provide caregiver education?”
- “What type of respite do you offer?”
- “How does your 24/7 help line access work?”
- “What experience do your care navigators have?”
- “Who are the members of your care team for the comprehensive assessments?”
- “Do you provide home safety assessments and support for improvements?”
Find a GUIDE program near you
Use CMS’s (Centers for Medicare & Medicaid Services) official GUIDE Participant List. CMS published a downloadable participant list of programs, including their contact details and locations (the complete list includes every selected participating organization).
Step-by-step: How to get started with GUIDE
If you’re a caregiver or a person living with dementia:
Step 1: Confirm eligibility
Step 2: Consent/alignment
Step 3: Expect a thorough first comprehensive assessment
Step 5: Ask about respite eligibility and scheduling
Step 6: Use the 24/7 support when things change
Step 7: Review the plan each year and keep records
Keep a copy of the care plan, respite notes, and navigator contact info. If your situation changes (health, caregiver capacity, or finances), inform the care navigator so they can re-tier and re-prioritize services.
Checklist for your first call/visit
- Medicare card and confirmation of Parts A (hospital insurance) & B (medical insurance), not MA (Medicare Advantage).
- Name and contact info for the primary clinician who can attest to a dementia diagnosis.
- A list of current medications to include prescription, OTC (over the counter), and supplements.
- A description of daily struggles with ADLs (Activities of Daily Living) /IADLs (Instrumental Activities of Daily Living), behavior changes, and caregiver challenges.
- Questions about respite rules, 24/7 contact, and how they coordinate with the person’s regular doctors.
What if something goes wrong with a GUIDE provider?
Try to resolve issues with the DCP first (ask to speak to a supervisor). If you continue to experience problems with services, you can contact Medicare Customer Service at 1-800-MEDICARE (1-800-633-4227) to report service issues or ask questions about Medicare benefits. CMS also points people to the Administration for Community Living (ACL) and alzheimers.gov resources for immediate non-Medicare help.
Remember
The GUIDE Model is an important new option that places both the person living with dementia and the caregiver at the center. It provides a care navigator working on your behalf, structured assessments, a personalized care plan tailored to your life, respite services, and 24/7 access when things become challenging. It starts with one call. Check your eligibility and reach out to the best CMS GUIDE participant for you. Ask the questions in the checklist. Permit yourself to accept help. You don’t have to shoulder this journey alone. GUIDE can serve as a bridge, connecting clinical care, community supports, and relief for both the person with dementia and the one who cares deeply.