Alzheimer’s disease affects an estimated 6.9 million Americans 65 and older, and is the most common cause of dementia, often associated with a decline in cognitive abilities, including memory, reasoning and thinking.
Most dementia patients receive care in their homes from family members or friends, and those caregivers are finding out that it isn’t an easy task.
In a 2024 report by the Alzheimer’s Association, 59% of family caregivers rated their stress as “high or very high.” The prevalence of depression and anxiety among dementia caregivers was also shown to be greater than non-dementia caregivers as each year, over 16 million Americans provide more than 17 billion hours of unpaid care.
Advocates and caregivers point to the isolation and lack of information and resources needed for a good outcome. Jim Mangi of Saline, Michigan, unexpectedly found himself in a caregiver role when his wife, Kathleen Schmidt, was diagnosed with Alzheimer’s disease at 57. With minimal guidance from the physician, Mangi was left to his own devices to navigate a new reality.
“It was a case of ‘diagnose and adios’ from the physician,” he says. “We got an appointment slip to come back in six months.”
To address the prevalent gaps in dementia care, the Centers for Medicare & Medicaid Services recently developed the Guiding an Improved Dementia Experience (GUIDE) Model to enhance dementia care coordination and support caregivers. The eight-year voluntary model involves interdisciplinary care, caregiver support and education, and respite services, with a goal to help people with dementia remain at home longer.
“The main goals of GUIDE, which involve enhanced patient outcomes, training, education and community engagement, align well with our aim at Theoria,” said Justin Di Rezze, physician and founder of Theoria Medical, a primary care service for senior living communities. “We want to gain that new standard of care for dementia across all of our facilities and further ensure every single patient we take care of receives the same level of value-based care.”
Di Rezze and his team operate in 20 states, including Michigan, and were eager to get involved in GUIDE. Di Rezze’s plan is to build technology that corresponds with the GUIDE Model to enhance digital alerts and messages between beneficiaries and their medical teams. Di Rezze is looking at an official rollout in July 2025.
“The GUIDE program is focusing on a select patient population that the health care community struggles with, and those patients and families just don’t have enough resources at their hands,” he said.
Addressing the need for dementia support
GUIDE services can be offered by physician practices, practices or clinics within a health system, and practices or clinics that have been established by a hospice, home health agency or PACE organization.
The model has two participant tracks: the established program track for dementia care programs already in existence, and the new program track designed for up-and-coming programs. It is geared toward Medicare Part B enrolled providers with the expertise to establish a dementia care program. GUIDE providers will assign participants a care navigator who will provide guidance on accessing support services.
To qualify, individuals must have a confirmed dementia diagnosis from a clinician practicing within a GUIDE program and not already live in a long-term care facility. Beneficiaries must also be enrolled in Medicare Parts A and B as their primary payer — they can also be dually enrolled in Medicare and Medicaid.
The payment model for GUIDE involves providers submitting claims for monthly dementia care management payment (DCMP) for beneficiaries. Each beneficiary is assigned a “model tier” based on their stage of dementia and whether they have a caregiver. GUIDE providers will assign participants a care navigator who will provide guidance on accessing support services.
Costs for beneficiaries with a caregiver range from $150 per month for the low complexity tier up to $360 for the highest complexity tier in the first six months, while costs after the initial six months range from $65 to $220 per month. Respite care is paid for up to $2,500 annually per beneficiary, and can be provided in the home, in an adult day center or at a facility that provides 24-7 care.
GUIDE Model in action
Organizations such as Avocare, a Dearborn-based home care and care management group, began implementing the GUIDE Model this summer. Avocare is actively providing its partner providers, including primary care physicians, gerontologists and psychiatrists, with GUIDE materials, says chief financial officer John Hillary.
“If [GUIDE] patients end up hospitalized, they don’t have to go to a nursing home and remain there — they can go right back home with these services,” Hillary said.
Led by Chief Executive Officer Jennifer Hillary, the women-owned company primarily serves Detroit’s Latino and Black communities. Historically, these communities demonstrate low participation levels in dementia support programs, says Natalie Garcia-Foster of Avocare.
Furthermore, the challenges for a caregiver for someone with dementia can take a mental, physical and financial toll, especially for people of color.
“Knowing the programs that are available, we saw the need to help our community,” Garcia-Foster says. “What is nice about the GUIDE program is that all barriers and access to programs have been removed,” including out-of-pocket costs and income eligibility requirements.
A major benefit of GUIDE is the ability to connect dementia patients and caregivers with respite services, including adult day care and inpatient care, behavioral health services, transportation, and some environmental modifications at home. Avocare also provides in-person or virtual caregiver training and support, and recently launched a 24/7 support and referral line.
Mangi says that no one has to navigate caregiving alone.
At 76, he’s still caring for Schmidt, 75, whom he calls “my best friend.” He also is an educator through his local Alzheimer’s Association chapter and runs his nonprofit, Dementia Friendly Saline, which offers educational and social events for people with dementia and their caregivers.
By 2030, the number of adults reaching 65 and older is expected to grow — which is the precise age range where they’re at the greatest risk for Alzheimer’s disease.
“We are going to give baby boomers drugs that are not going to prevent [Alzheimer’s disease] — they’re going to slow it down, which means that there’s going to be that much more caregiving that will need to be provided,” Mangi says.
Mangi is optimistic that GUIDE can provide relief to caregivers and minimize the stigma around dementia.
“It’s a disease, not a disgrace,” he says. “The best definition of a dementia-friendly community is one where people walk towards a person with dementia, not away from them.”
Click here to find a GUIDE participant in your state.
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