Navigating Life After Dementia Diagnosis: Joe’s Story

CMS’ GUIDE Model aims to improve the quality of life for people living with dementia, reduce caregiver strain

When Joe Montminy was diagnosed with early onset Alzheimer’s disease, he said he and his family were unprepared for the many challenges they would face in the years to come.

Montminy said his neurologist focused on treating the disease but offered little other support for learning with how to live with the disease.

“I probably spent two years just trying to figure out how to get my life under control, where to go for information on who can help me… I was just spinning,” Montminy recalled.

“It’s amazing how when you suddenly have your life turned upside down, you’re just trying to get grounded,” he said.

GUIDE Aims to Support Care Coordination and Services

To better support people with dementia like Montminy and their families, the Centers for Medicare & Medicaid Services (CMS) Innovation Center, has designed the Guiding an Improved Dementia Experience (GUIDE) Model. It aims to improve the quality of life for Medicare beneficiaries living with dementia, reduce strain on family caregivers, and help people remain in their homes and communities by improving care coordination and management, caregiver education and support, and respite services.

GUIDE is among several other models (pilot programs) developed by the CMS Innovation Center that promote value-based care, in which providers are rewarded based on the quality of care they provide rather than the volume of services under a fee-for-service payment system.

CMS intends to launch GUIDE on July 1, 2024, and the model is scheduled to run for eight years.

Though Montminy was just 54 when he was diagnosed and ineligible for Medicare benefits, he said the model will offer necessary supports for beneficiaries and their families who are unsure of where to turn for support after receiving a dementia diagnosis.

Montminy, a member of the U.S. Department of Health and Human Services’ Advisory Council on Alzheimer's Research, Care, and Services, spoke of his experiences to CMS staff at the Council’s July 2023 meeting. Members of the GUIDE Model team said feedback from those in the community that have struggled first-hand with the disease helped them design the model.

Under the model, health care provider participants in GUIDE would deliver key supportive services to people with dementia, including comprehensive, person-centered assessments and care plans, care coordination, and 24/7 access to a support line.

Medicare beneficiaries with dementia and their caregivers may have access to a care navigator who would help them access services and supports, including clinical services and non-clinical services such as meals and transportation through community-based organizations.

Alleviating the Burden of Dementia Care

“We all know few diagnoses more devastating than dementia,” said CMS Administrator Chiquita Brooks-LaSure. “The disease not only takes those who are living with it, but their loved ones who care for them, on an incredibly complex and complicated health care journey, one that takes an enormous, physical and financial toll.”

She said she, too, has personally witnessed the strain the disease can cause families: her grandmother struggled with dementia for the last ten years of her life.

Brooks-LaSure recalled how at a birthday celebration, her grandmother couldn’t remember she had just eaten a piece of birthday cake even though her empty plate was still in front of her. Another time, she remembered when her grandmother was “looking at my father and saying you’re too old to be my son because her mind was where she was in her 40s and 50s.”

Helen Bundy Medsger, a dementia support advocate who has personally cared for family members suffering from Lewy body dementia, said the model will address the current lack of support many caregivers experience.

“Over the course of those many years, the lack of wraparound care, services and supports not only profoundly affected my loved ones, but my own physical, emotional, and financial wellbeing,” she said.

“The anguish that is shared with me, by the many caregivers I continue to support, only reinforces the desperation that encompasses families when the systems do not have the resources in place to address the multitude of needs they have,” Bundy Medsger said.

GUIDE is a “major step” in helping families who live with dementia, helping them seek care services and supports, she said.

Promoting Health Equity

Additionally, the model aims to promote better health outcomes for all families suffering from dementia.

“Black, Hispanic, and Asian Americans, Native Hawaiians and Pacific Islander populations have been particularly disadvantaged in receiving dementia care, even though they experience a higher prevalence of dementia, have more unmet needs, and spend a higher percentage of their family assets on care,” said Brooks-LaSure.

“The GUIDE Model will help us provide new resources to ensure greater access to dementia care in underserved populations and communities and therefore support health equity,” she said.

Montminy expressed support for the model. “I’m so excited about what this can offer people,” Montminy said.