The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) is a 2024-2026 Systems Change in Inclusive Health Subgrant recipient.
Influencing a National Dementia Care Initiative to Include People with IDD
NTG’s Change Thinking! project is working to integrate needs of people with IDD and dementia in the recent Guiding an Improved Dementia Experience (GUIDE) Model, a national initiative by the Centers for Medicare and Medicaid Services that started in July 2024. The GUIDE Model aims to improve coordinated dementia care for both people with dementia and their caregivers by providing care navigation services, access to a support line, caregiver education, respite services, and connections to community resources. Because NTG launched its project at the very start of the implementation of the GUIDE Model, they were able to take early action—partnering with healthcare and disability organizations across the United States and helping to shape the model so it better reflects the unique needs of adults with IDD and their caregivers. In their first year of funding, NTG hosted webinars for healthcare providers and for caregivers about dementia care for adults with IDD. They also developed an online training for GUIDE professionals that focuses on unique needs of individuals with IDD and dementia, family caregiver needs and supports, and strategies for accessing community resources.
Scaling Inclusive Dementia Care Through Training and Collaboration
In their second year of funding, NTG made their online training for GUIDE professionals available to GUIDE organizations across the United States along with the general public. NTG also conducted one series of webinars for healthcare providers and another for the audience of adults with IDD and caregivers. The former focused on dementia diagnosis, post-diagnosis management, and coordination of dementia care, while the latter focused on cognitive screening, brain health, and advocacy. In addition to providing support to GUIDE organizations, NTG also helped build collaborations between healthcare providers, disability organizations, government agencies, and private sector partners through initiatives in Massachusetts and California that strengthen coordination across healthcare, aging, and disability systems. These state initiatives aim to increase awareness of the GUIDE Model and enrollment of adults with IDD and dementia. Through this project, NTG also identified barriers to dementia care for adults with IDD within GUIDE implementation.
This work was supported in part by the Special Olympics Systems Change for Inclusive Health Subgrant, funded by the Centers for Disease Control and Prevention. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services, and do not imply endorsement by Special Olympics.
