Illinois

ILLINOIS 2019 STATE POLICY PRIORITIES

Increase Public Awareness, Early Detection And Diagnosis

Building an Alzheimer's Infrastructure in Illinois

Illinois has no full-time state government staff dedicated to the implementation of the Alzheimer's Disease Illinois State Plan. The State Plan will better equip Illinois government in confronting the Alzheimer's crisis and adequately prepare our healthcare delivery system. The Alzheimer's Association is proposing to redirect a private revenue stream to fund this position and more. Alzheimer's research is one of a handful of income tax check-offs state residents can opt to donate towards when receiving a refund from the state.This money is used to provide support for research within Illinois.The Association will work to redirect some of the money to fund a full-time dementia coordinator at the Illinois Department of Public Health. In addition, some of the money will also still be used for research and data collection to better guide the state in their fight to end Alzheimer's.

Increase Access to Home and Community-Based Services

Support Illinoisans with Younger-Onset Dementia

The Community Care Program (CCP) is one of the most robust well operated home and community-based services programs in the country. The CCP is responsible for providing a better quality of life for seniors while saving state taxpayers hundreds of millions, if not billions, of dollars by avoiding premature and more costly nursing home placement. Unfortunately, the CCP only serves Illinois residents 60 years or older. However, we know there are thousands of Illinoisans under the age of 60 who have received the life-altering diagnosis of younger-onset dementia. Often times these families must face this emotional and financial toll all on their own. The Alzheimer's Association will advocate to waive the age requirement for these services if the resident has developed Alzheimer's or another dementia. This will help families living with dementia and could save state taxpayers millions of dollars.

Advance Alzheimer's Policy

Authorize "The End of Alzheimer's Begins With Me" Scratch-Off Lotto Game

Alzheimer’s disease affects 220,000 residents in Illinois and a recent U.S. Centers for Disease Control and Prevention study found that only 45% of people with Alzheimer’s disease actually knew they had the disease. The Alzheimer’s Association is working to ensure that those living with Alzheimer’s disease receive the care and support they require, while we raise awareness and promote early detection and diagnosis. The Association recently surveyed 72 Illinois counties and found that an astounding 87% of residents who have experience with Alzheimer’s disease felt that the State of Illinois was not spending enough on care services for those affected by Alzheimer’s disease. With this in mind, authorizing the creation of the scratch-off lotto game, “The End of Alzheimer’s Starts with Me,” will generate private funds to help provide care, support, education, and awareness to families who need help tackling Alzheimer’s disease.



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: 2014-2017 Report and Recommendations, was released January 2014.



ADVOCACY EVENTS

Illinois State Advocacy Day

May 01, 2019

Our 2019 Illinois Advocacy Day is Wednesday, May 1st. This 1-day 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. Transportation and meal(s) provided. All you need is passion - no experience required! For more information, please contact Kate Bobbitt at [email protected] or 708-669-2471.


2020 Advocacy Forum

March 22-24, 2020 alz.org/forum

As an Alzheimer's advocate, you've worked to advance critical public policy, making a difference in the lives of all those impacted by Alzheimer's. Together we've achieved great increases in federal Alzheimer's research funding and secured critical advances in care and support. But we can't take our successes for granted — we need to keep the pressure on.

Join us in Washington for an inspiring three-day event filled with networking, training and education.

Be part of the movement that's making a difference in the fight against Alzheimer's.


Sign Up to Learn More About Advocacy Opportunities in Illinois


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

State Affairs Contact Jennifer Belkov | | [email protected]



Elected Officials

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Alzheimer's Facts and Figures in Illinois

Number of People Aged 65 and Older With Alzheimer's by Age

Year 65-74 75-84 85+ TOTAL
* Totals may not add due to rounding
2019 33,000 96,000 97,000 230,000
2025 38,000 120,000 110,000 260,000

Percentage change from 2019

Medicaid

$1.713

BILLION

Medicaid costs of caring for people with Alzheimer's (2019)

27.0%

change in costs from 2019 to 2025


Medicare

$27,193

per capita Medicare spending on people with dementia (in 2018 dollars)


HOSPICE (2016)

8,854

#

of people in hospice have a primary diagnosis of dementia


17%

of people in hospice with a primary diagnosis of dementia

Hospitals (2015)

1,528

#

of emergency department visits per 1,000 people with dementia


21.9%

dementia patient hospital readmission rate

Caregiving

588,000

Number of Caregivers

670,000,000

Total Hours of Unpaid Care

$8,471,000,000

Total Value of Unpaid Care

$440,000,000

Higher Health Costs of Caregivers

Number of Deaths from Alzheimer's Disease (2017)

4,021

6th leading cause of death in Illinois

For more information, view the 2019 Alzheimer's Disease Facts and Figures report at alz.org/facts.


U.S. Statistics

Over 5 million Americans are living with Alzheimer's, and as many as 14 million will have the disease in 2050. The cost of caring for those with Alzheimer's and other dementias is estimated to total $290 billion in 2019, increasing to $1.1 trillion (in today's dollars) by mid-century. Nearly one in every three seniors who dies each year has Alzheimer's or another dementia.



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