Multi-Agency Ohio Partnership Creates New Model for Supporting Individuals with IDD and Dementia

Unique initiative bridges dementia services with intellectual and developmental disability services to better support individuals, particularly those with Down Syndrome

CLEVELAND, OH – In recognition of National Developmental Disabilities Awareness Month, a collaborative group of service organizations in Ohio supported by grant funding from the Administration for Community Living, Department of Health and Human Services (ACL), has introduced “Dementia Friends for Intellectual and Developmental Disabilities,” an education, outreach and support program to provide meaningful services to individuals in the community with intellectual and developmental disabilities (IDD) who are also living with or at risk for dementia, as well as their family members, caregivers and supporters. 

This important community outreach initiative delivers information to individuals living with intellectual and developmental disabilities, professional caregivers, individuals working and volunteering within IDD communities, and members of the community about dementia incidence, risk factors, and early warning signs and symptoms, along with the development of effective communication strategies.  Additionally, it provides links to support services for individuals and families currently navigating both IDD and dementia. 

“Our goal of this pathbreaking work and innovative approach is to develop, implement and expand services that are available to support individuals with IDD living in the community who are aging and also with or at risk of dementia,” said Bonnie Burman, President of the Ohio Council for Cognitive Health.  “By generating awareness in the community, providing basic education about signs and symptoms of dementia, and offering a service designed to effectively address the needs of this population, we are beginning to see an impact in Ohio that we believe can be replicated in other states.“

There are an estimated 180,000 older adults in the US with intellectual and developmental disabilities, 11,000 of which are expected to be affected by some form of dementia. People with Down Syndrome have a higher risk of developing Alzheimer’s Disease because they carry a third copy of chromosome 21, the gene that produces one of the key proteins involved with changes in the brain due to Alzheimer’s. It is estimated that nearly 50% of people with Down Syndrome develop Alzheimer’s by the time they reach their 60s. 

Dementia Friends for Intellectual and Developmental Disabilities training materials were created by a special workgroup formed by the Ohio Council for Cognitive Health to adapt the widely used Dementia Friends USA training, a global movement dedicated to changing the way people think, act, and talk about dementia to incorporate important modifications in support of people with IDD and with or at risk for dementia, their families and friends. Other partner organizations in the workgroup include Lucas County Board of Developmental Disabilities, Manahan and MemoryLane Care Services.  

Another key element of the initiative has been the adaptation of BRI Care Consultation, an evidence-based care-coaching program that provides guidance and support for people living with dementia and their family and friend caregivers, to accommodate the specialized needs of individuals with intellectual and developmental disabilities with or at-risk for dementia. Adaptations include development of additional clinical guides, modified assessment, and training resources for Care Consultants, which address topics including effective communication, environment, future care planning, guardianship, legal issues, aging and dementia. Additionally, adaptations aim to develop person-centered language and incorporate it into the BRI Care Consultation Service Delivery Manual to ensure individuals with IDD and supporters are presented as clients throughout the manual.

“In honor of National Developmental Disabilities Awareness Month in March, we are beginning to share our successes in breaking down the barriers between aging, dementia and IDD,” said Orion Bell, CEO of Benjamin Rose Institute on Aging. “While aging poses its own challenges, when an IDD diagnosis is added in the mix the challenge is often heightened. The outstanding collaboration here in Ohio between so many vital organizations can hopefully serve as inspiration for other areas of the country to further address this growing need.”

This innovative initiative demonstrates highly effective collaboration between 18 Ohio-based organizations participating in three ACL grant-funded projects in Ohio dedicated to supporting individuals with IDD and dementia.  

Partners in the Urban Rural project, supported by ACL grant 90ADPI0052-01-00, include Miami University Scripps Gerontology Center, Ohio Council for Cognitive Health, Benjamin Rose Institute on Aging, Welcome House, United Seniors of Athens County, and O'Neill Center. 

Partners in the Greater Toledo initiative, supported by ACL grant 90ADPI0008-01-00, are Benjamin Rose Institute on Aging, Ohio Council for Cognitive Health, Miami University Scripps Gerontology Center, Lucas County Board of Developmental Disabilities, MemoryLane Care Services, Manahan, Area Office on Aging of Northwestern Ohio and Aetna.

Partners in Summit County, supported by ACL grant 90ADI0045-01-00, include Summit County Public Health, Summit Developmental Disabilities Board, Direction Home Akron Canton, Smile Minded Smartworks, Northeast Ohio Medical University, Geriatric Workforce Enhancement Program, Akron Metropolitan Housing Authority, Ohio Council for Cognitive Health and Benjamin Rose Institute on Aging.   

For additional information about the initiatives being developed and implemented in Ohio, please contact Bonnie Burman at 614-266-3809 or bburman@OCFCH.org.