Illinois State Alzheimer’s Plan Overview
Illinois publishes an updated Alzheimer’s state plan every three years pursuant to the Alzheimer’s Disease Assistance Act (410 ILCS 405). The Act charged the Illinois Department of Public Health to create an Advisory Committee of Alzheimer’s disease researchers, professional caregivers, members of advocacy organizations, people living with Alzheimer’s and their families. In 2012, the Act was amended to drive the next iteration of the state plan toward dementia-capability. The latest update, the Alzheimer’s Disease Illinois State Plan: 2020-2023 Report and Recommendations, was completed in September 2020.
Illinois 2023 Policy Priorities
Ensuring Equitable Access to Diagnosis and Care Planning
Currently, Illinoisans under age 65 who are living with dementia do not have access to the same services as those over age 65. In 2017, Medicare created a billing code for Alzheimer’s diagnosis and care planning, however, those under 65 on Medicaid do not have access to this critical service. With current promising treatments only effective in the early stages of the disease, getting an early diagnosis is more important than ever. Additionally, early care planning reduces the overall cost of this disease to families and state budgets. The Alzheimer’s Association and advocates are calling on Illinois Medicaid to begin reimbursing providers for Alzheimer’s diagnosis and care planning, so all Illinoisans have access to these important medical services.
Empower Guardians with Dementia Training
As the disease progresses, many people living with Alzheimer’s or dementia may require a guardian appointed to protect their well-being and interests. However, guardians in Illinois are not currently required to receive any type of training on Alzheimer’s or dementia. The Alzheimer’s Association urges state policymakers to support legislation that will ensure both public and private guardians receive dementia-specific training and learn how to best serve this growing population.
Enhance Public Awareness of Alzheimer’s and Dementia
The number of people aged 65 and older living with Alzheimer’s in Illinois is expected to grow by 13% in 2025, yet too many Illinoisans are unfamiliar with brain health and why early diagnosis of Alzheimer’s and dementia is so important. The Alzheimer’s Association is seeking leadership from our state government to continue a comprehensive public awareness campaign focused on diverse, rural, and other underrepresented communities that includes messages on brain health, early detection and diagnosis, and access to services.
Home and Community-Based Service Alignment
Alzheimer’s is an aggressive disease that demands different types of care throughout its various stages. While nursing homes and other inpatient facilities play a vital role in the later stages, services performed in home and community-based (HCBS) settings may be more appropriate for the early and middle stages of the disease and for those with younger-onset Alzheimer’s. Illinois offers HCBS services to residents through two programs — the Home Services Program (HSP) for people under 60 and the Community Care Program (CCP) for those 60 and over. When a person living with Alzheimer’s turns 60 years old, however, they have access to fewer services due to differences in the two HCBS programs administered by the state. The Alzheimer’s Association is partnering with AARP to propose legislation that will ensure there is no loss of service options when transitioning to the CCP program.
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State Affairs Contact: Jennifer Belkov
people living with Alzheimer’s in Illinois
Illinoisans are providing unpaid care
Medicaid cost of caring for people living with Alzheimer’s (2020)
increase in Alzheimer’s deaths since 2000
in hospice with a primary diagnosis of dementia
increase of geriatricians in Illinois needed to meet the demand in 2050
Resources to Drive Change in Illinois
The following resources developed by AIM and the Alzheimer’s Association will help you learn more about the issues impacting people living with Alzheimer’s and their caregivers, how Illinois policymakers are addressing these gaps, and how you can help drive change.