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 state Alzheimer’s plan was updated in September 2020 and most recently in January 2023. In the newest state plan, recommendations are detailed for new policies to address the statewide response to Alzheimer’s and other dementia.
Illinois 2024 Policy Priorities
Expand Access to Alzheimer’s Treatments for State Employees
Following the Food and Drug Administration’s (FDA) approval of Alzheimer’s treatments that slow the progression of the disease, state governments have a duty to ensure access to these treatments in Medicaid and other state programs, such as state employee health plans. With the number of Illinoisans living with Alzheimer’s and other dementia growing each year, the Alzheimer’s Association is urging state lawmakers to require health insurance coverage of Alzheimer’s treatments in the Illinois State Employee Health Plan.
Improve the Use of Advance Directives Across Health Care Settings
Advance directives allow individuals to express how they want to live, be treated, and how medical decisions are made on their behalf. Illinois law allows residents to make advance directives; however, providers are unable to access advance directive documents if the individual or appointed person is unable to share them. Due to the impact of dementia on a person’s ability to make decisions, the Alzheimer’s Association is calling on state lawmakers to establish a state repository to allow individuals living with dementia, family members and caregivers, and providers to securely access vital advance directive documents.
Spread Dementia Awareness Across Illinois
In Illinois, 230,000 residents are living with Alzheimer’s, but as many as half of them are not formally diagnosed. An early and accurate diagnosis of Alzheimer’s can improve access to care and support services, enhance quality of life and reduce the financial impact of the condition. Illinoisans must have access to information about brain health, early detection and diagnosis, support services and resources, and FDA-approved treatments to help mitigate the impact of dementia. The Alzheimer’s Association is urging state lawmakers to support legislation that will develop statewide awareness campaigns on Alzheimer’s and other dementia with a particular focus on underserved rural communities and communities of color that are disproportionately affected by Alzheimer’s.
Ensure Appropriate Nursing Home Staffing Ratios
Appropriate staffing is a key driver of quality care in residential long-term care settings. While Illinois requires a basic staffing ratio to ensure safety of residents and staff, facilities are often not held accountable for violating staffing requirements. The Alzheimer’s Association is calling on state lawmakers to support legislation that will ensure staffing ratios for nursing homes are appropriately enforced to support both staff and residents living with dementia.
Illinois State Advocacy Day
Join us for State Advocacy Day on Wednesday, March 13, 2024! Advocates from across the state will visit legislators at the Capitol to urge support for policy priorities that support Illinoisans impacted by Alzheimer’s and other dementia. More details coming soon.
Sign Up to Learn About Advocacy Opportunities in Illinois
Find My Chapter
Together, we’re making an impact. Find an Alzheimer’s Association chapter in your community for more ways to engage.
State Affairs Contact: Jennifer Belkov
Email: [email protected]
people living with Alzheimer’s in Illinois
Illinoisans are providing unpaid care
Medicaid cost of caring for people living with Alzheimer’s (2020)
deaths from Alzheimer’s disease in 2019
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.