Disrupt Long-Term Care

For people with Alzheimer’s and other dementia and their families, remaining at home is often a key goal yet existing policies often require residential based care. The Alzheimer’s Association, in collaboration with many partner organizations, is calling on legislators to support forthcoming legislation that would decouple functional eligibility standards between institutional and home care, helping to keep residents in the most appropriate setting based on their level of need. This bill will ensure residents can access appropriate long-term care services commensurate with their needs, with an emphasis on increasing access to home and community-based services.

Empower First Responders with Dementia Training

First responders are critical to the health and safety of people living with Alzheimer’s. They frequently interact with individuals who have dementia in a variety of settings and are among the first to observe instances of abuse and neglect. Without proper training on how to recognize the signs of dementia and how to effectively communicate with people with dementia, situations may escalate quickly with potentially dangerous consequences. The Alzheimer’s Association is calling on legislators to support forthcoming legislation in Illinois that will require training for emergency medical services workers to educate these professionals on understanding specific behavior symptoms, effective communication strategies, protocols for contacting caregivers and available local resources.

Maintain Dementia-Specific Training Standards for Direct Care Workers

In 2019, dementia training requirements were enacted for direct-service workers, including home health agencies, memory care units, and all service providers who advertise services targeted toward people with Alzheimer’s or dementia. These training requirements are helping to ensure that direct-service staff is providing the highest quality care to people living with a form of dementia. However, the training requirements will expire without legislative action. That’s why the Alzheimer’s Association is urging legislators to pass an extension of dementia training requirements for direct service workers.

Ensure Dementia Competency for Home and Community-Based Care

Many of our most vulnerable residents with a form of dementia receive services through the Community Care Program (CCP) at the Department on Aging. These CCP providers currently receive some dementia training. However, to ensure they can deliver quality care to the residents they serve living with dementia, the Alzheimer’s Association is calling on legislators to support forthcoming legislation that will ensure all individuals serving people through the CCP program receive regular dementia-specific training.

Illinois State 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 comprised of persons experienced in Alzheimer's disease research, professional caregivers, members of advocacy organizations, persons living with Alzheimer's, and family members of those living with the disease. 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 State Advocacy Day

February 22, 2022

Join our Illinois Advocacy Day! This week-long virtual event organizes, trains and connects Alzheimer's advocates with their state legislators, compelling our leaders to engage in the fight to make Illinois dementia capable. We'll bring our voices together to stand up and protect the rights of the nearly 1 million Illinois residents affected by this disease. In memory of those we've lost and in honor of those currently living with the disease, join us and help push Alzheimer's Association-backed legislation to better the lives of individuals, families, caregivers and communities in Illinois impacted by Alzheimer's disease. All you need is passion - no experience required!

Sign Up to Learn More About Advocacy Opportunities in Illinois

Sign me up to participate in the upcoming State Advocacy Day!

State Affairs Contact David Olsen | 847-779-6947 [email protected]

Alzheimer's Facts and Figures in Illinois

Alzheimer's Disease Facts and Figures, an annual report released by the Alzheimer's Association®, reveals the burden of Alzheimer's and dementia on individuals, caregivers, government and the nation's health care system.


woman holding glasses


Individuals living with Alzheimer's in Illinois

This number is projected to increase 13.0% between 2020 and 2025.

Nationally, there are more than 6 million Americans living with Alzheimer's. This number is expected to more than double by 2050.



Deaths from Alzheimer's in Illinois in 2019

couple hugging on bench

Alzheimer's is the 6th leading cause of death in Illinois.

There were 1,740 more deaths than expected from Alzheimer's and dementia during the COVID-19 pandemic in 2020, 17% higher than average.


caregiver hugging

Value of unpaid care work

Hours of unpaid care

Nationally, Alzheimer's and dementia caregivers provided nearly $257 billion in unpaid care in 2021. In Illinois, there are 383,000 dementia caregivers, who each provide an average of 24 hours of unpaid care per week




per capita Medicare spending on people with dementia



Medicaid costs of caring for people with Alzheimer's in 2020

Hospice and Hospitals


# of people in hospice with a primary diagonsis of dementia


# of emergency department visits per 1,000 people with dementia

People with Alzheimer's disease have twice as many hospital stays per year as other older people. Nationally, emergency department visits for those with dementia have increased nearly 30% over the past decade.

The 2021 Alzheimer's Disease Facts and Figures report contains data on the impact of Alzheimer's on the nation and in every state across the country.
Visit to view the full report.