What’s Changing About Dementia Care Offered in Patient’s Home?

The eight-year Guiding an Improved Dementia Experience Model (GUIDE) seeks to keep Medicare enrollees outside of long-term care facilities by extending a package of local care coordination and management and caregiver education and support services.

People with Alzheimer’s disease and other forms of dementia end up in emergency care 1.4 million times a year, a new study from the Institute for Healthcare Policy & Innovation University of Michigan, published in JAMA Neurology, shows.

3 more findings from the study:

1. Overall, dementia accounted for nearly 7% of all ED visits among older adults.
2. Dementia patients were twice as likely to seek emergency care for accidents and behavioral disturbances compared to patients in the same age range who did not have dementia. Researchers said behavioral issues are among the primary reasons for ER visits among dementia patients “may reflect caregiver difficulty in managing behaviors.”
3. Dementia patients in the ED were twice as likely to receive antipsychotic medications than other ED patients over 65.

Most People with Dementia Do Not Live in Nursing Homes

Estimates suggest that more than four times as many people with dementia live in traditional community settings than in nursing homes and residential care (such as assisted living or personal care homes). However, more than half of nursing home residents have dementia. Among those ages 70 and older living in nursing homes in 2019, 70% had dementia, according to one recent study.

Where people with dementia live and how they receive care depends partly on their ability to pay.

• People with higher incomes who have dementia are somewhat more likely to live in residential care, which costs $49,000 (median) per year in 2019 and is not covered by Medicare.
• People with lower incomes with dementia are likelier to live at home in the community or in nursing homes. Depending on the state, Medicaid (for those who qualify) may pay a portion of nursing home expenses, which cost $90,000 (median) per year in 2019.

The current system of care for people with dementia can be very fragmented and siloed,” CMS Administrator Chiquita Brooks-LaSure said in a speech at a meeting of the National Alzheimer’s Project Act Advisory Council. “This results in poor outcomes, duplicative and depersonalized services, and severe impacts on the quality of life for caregivers, who often provide significant amounts of assistance with personal care, finances, household management, clinical coordination, and other care. Additionally, fragmented care often leads to substantial financial burden, increased caregiving demands, and physical and mental strain for those caring for someone with dementia.”

The Guiding an Improved Dementia Experience (GUIDE)

The eight-year Guiding an Improved Dementia Experience Model (GUIDE) seeks to keep Medicare enrollees outside of long-term care facilities by extending a package of local care coordination and management and caregiver education and support services.

The Guiding an Improved Dementia Experience is a “first-of-its-kind initiative for CMS designed to support both those living with dementia and those caring for them,” she said. Specifically, the GUIDE Model will include a sustainable alternative payment model that offers standardized dementia care, including assessments, care coordination, ongoing monitoring, medication management, and a 24/7 support line.”

The model has three main goals:

1. To improve the quality of life for people with dementia.
2. To reduce strain on their unpaid caregivers.
3. To help people remain in their homes and communities, preventing or delaying long-term nursing placement.

Where people with dementia live and how they receive care depends partly on their ability to pay.

3 Ways to Participate in the Model

Participants in the GUIDE Model will establish dementia care programs that provide ongoing, longitudinal care and support to people living with dementia through an interdisciplinary team.

1. If a participant can’t meet the GUIDE care delivery requirements alone, they can contract with other Medicare providers/suppliers, known as “partner organizations,” to meet the care delivery requirements. CMS will provide a monthly per-beneficiary payment to support a team-based collaborative care approach.
2. Among their other responsibilities, 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, according to the agency. CMS will pay model participants for respite services — the temporary services provided to a beneficiary in their home, at an adult day center, or at a facility that can provide 24-hour care – to give unpaid caregivers temporary breaks from their caregiving responsibilities.
3. The eight-year model will offer two tracks, one for established programs and one for new programs. Established programs must have an interdisciplinary care team (including a care navigator), use an electronic health record platform that meets the standards for certified electronic health record technology, and meet other care delivery requirements. New programs must not be operating a comprehensive community-based dementia care program at the time of model announcement and will have a 1-year pre-implementation period to establish their programs.

The model launched July 1, 2024, for eight years.