SURVEY RESULTS. State of Illinois Alzheimer s Disease Annual Survey. Dear Friends,

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1 SURVEY RESULTS State of Illinois lzheimer s Disease nnual Survey Dear Friends, I am very pleased to share with you the results of the lzheimer s ssociation, Illinois Chapter s 2016 State of Illinois lzheimer s Disease Survey. This is the fourth consecutive year we have conducted this survey, and as the prevalence of lzheimer s grows relentlessly, so has participation throughout our diverse state. Total participation increased by more than 75 percent in 2016 from 1,559 respondents in 2015 to 2,737 this year. Our geographical reach also rose significantly, from 72 of Illinois 102 counties last year to 88 in This expansion was only possible thanks to the dedication of our survey distribution partners, who are listed on the back cover of this report. While we have much to celebrate as a result of this outreach, consider the context in which this survey was administered: the State of Illinois has now been operating without a budget for more than 13 months. Many of the programs that residents facing dementia count on to ensure their quality of life are in jeopardy due to a lack of funding or proposals to eliminate them: More than 60 percent of respondents indicated that they or someone they know are served by state-funded, in-home and adult day services or by the state s emergency home response program. We strongly support a bipartisan resolution that funds these services responsibly and maintains them in their current form. Nearly 91 percent of respondents said they would be less likely to support an elected official who does not protect these services. We believe all members of the General ssembly have an interest in finding solutions that benefit constituents and families facing lzheimer s. In-home and community-based care programs demonstrably cost three to four times less than nursing home placement, with better outcomes and higher levels of client satisfaction. Considering the fiscal circumstances of our state, it is critical that we avoid unnecessarily or prematurely institutionalizing Illinois residents with lzheimer s disease or another dementia. Respondents also supported positions the lzheimer s ssociation has taken on legislation in Springfield: large majority of respondents 88.3 percent support the first wage increase in six years for in-home health care workers, many of whom live below the federal poverty level. 96 percent of respondents disapproved of a proposal that would eliminate their right to file anonymous complaints against nursing homes if abuse or neglect were suspected. We worked to prevent this legislation from becoming law, and the results of this survey strengthen our resolve to block any similar future attempts to reduce consumer rights and provider accountability. 98 percent of respondents indicated that we should continue to oppose a measure allowing nursing homes to avoid meeting minimum nurse staffing ratios, endangering residents health and quality of life. While Illinois fiscal troubles are indisputable, the 220,000 residents living with lzheimer s disease did nothing to cause this crisis. We anticipate that by 2025, more than 260,000 people in Illinois will be living with lzheimer s disease. Every step we take toward dementia-capable reforms through adequate investments rather than cuts in our healthcare delivery system will improve the lives of those with this terrible disease and reduce the financial burden on taxpayers. What gives me hope? Legislation we sponsored in 2016 that requires dementia training for healthcare providers who advertise dementia-specific services passed the General ssembly unanimously in May. So I believe we can make progress and reach a responsible budget compromise to protect the vital services people affected by lzheimer s rely on. Regardless of the political tensions in Springfield, the lzheimer s ssociation, Illinois Chapter will work every day to raise awareness, increase the scope and impact of dementia research and provide care and support to those in need. gain, thanks to everyone who took the time to complete the survey, to every partner organization and to you, for your efforts in the fight against lzheimer s disease. Sincerely, Erna E. Colborn President and CEO, lzheimer s ssociation, Illinois Chapter 8430 West Bryn Mawr venue, Suite 800, Chicago, IL alz.org

2 Section 1 88 Counties Represented Profile of 2016 Survey Participants ge of Respondents % % % % % % 10% 20% Communities 30% 40% Race/Ethnicity 50% Counties where respondents live Sexual Orientation 40% 4.79% Prefer not to answer 2.29% sian 3.69% Hispanic or Latino 17.45% Black/frican merican 30% 69.23% White 20% Heterosexual % LGBT % Prefer not to answer % 10% Urban/ City Suburban Small Town Rural/ Farm rea % merican Indian or laskan Native 1.36% Two or more races.92% Other Join an lzheimer s ssociation mbassador team today! mbassadors learn about our policy work and the legislative process and are trained to engage with their congressional members. We make visits together to help build a personal relationship with congressional leaders and their staff. We emphasize that lzheimer s legislation must be a national priority requiring their support and votes. mbassadors voices matter in assuring that congressional members know how lzheimer s disease impacts their constituents. Together, we have made great strides join us to continue advancing vital public policy! Learn more about the mbassador Program! Contact Jen Belkov at or jbelkov@alz.org

3 Section 2 Illinois lzheimer s Survey Results re you familiar with what your state representatives or state senators are doing to address the needs of Illinois residents with lzheimer s disease and other dementias? 19.75% 80.25% Do you know someone with lzheimer s disease or a related dementia who was discharged from a living establishment due to their behavior? 26.20% 73.80% Where did the incident occur? 50.77% 49.23% n assisted living facility Was the person discharged quickly, leaving little or no time to find residency? nursing home 59.47% 40.53% Do you support establishing regulations on a state level to ensure persons with lzheimer s disease or a related dementia are not transferred or discharged solely because they exhibit disruptive behavior? 90.20% 9.80% Senator Jennifer Bertino-Tarrant (Shorewood) meeting with constituent advocates outside the Senate chamber doors. Senator Daniel Biss (Evanston) discussed the need to protect funding for lzheimer s care and support services.

4 Do you or someone you know utilize any of the following services? dult day service Emergency home response In-home services 62.89% 37.11% Which service do you or someone you know utilize most? 4.79% 22.86% 72.35% Emergency home response dult day service In-home services How likely are you to support an elected official who fails to protect adult day services, emergency home response and in-home services? 7.15% More likely 90.63% Less likely Given the financial crisis Illinois is facing, do you believe our state should be investing in research to find a cure for lzheimer s? 87.39% 12.61% 2.22% Would not matter Senator Mattie Hunter (Chicago) greets constituents during the 2016 Illinois ction Summit. Senator Jacqueline Collins (Chicago) signs up (with the help of constituents) as a member of the Illinois lzheimer s Legislators lliance.

5 Should Illinois eliminate your ability to anonymously report a complaint of abuse or neglect against a nursing home? 4.14% 95.86% Many Illinois home health workers that care for those with lzheimer s have not received a wage increase since 2010, and are living below the federal poverty level. Knowing this information, do you support a $15/hr wage for all home health care workers in Illinois? 88.28% 11.72% Do you believe the State of Illinois should allow nursing homes to be understaffed? 98.13% 1.87% Do you believe nursing homes should be able to accept new residents if they are understaffed? 8.76% 91.24% Senator Dave Koehler (Peoria) addressed more than 200 Illinois ction Summit attendees, sharing his personal connection to lzheimer s disease and urging advocates to keep fighting for a dementia-capable Illinois. State Representative Tom Demmer (Rochelle) sharing a laugh at the Rock River Walk to End lzheimer s in Dixon.

6 LZHEIMER S STTISTICS ILLINOIS U.S. STTISTICS Over 5 million mericans are living with lzheimer s, and as many as 16 million will have the disease in The cost of caring for those with lzheimer s and other dementias is estimated to total $236 billion in 2016, increasing to $1.1 trillion (in today s dollars) by mid-century. Nearly one in every three seniors who dies each year has lzheimer s or another dementia. 65+ Number of people aged 65 and older with lzheimer s by age* Year TOTL ,000 90,000 96, , ,000 98,000 98, , , , , ,000 Percentage change from $ Medicaid costs of caring for people with lzheimer s, 2016 MILLION 4.5% 1,531 * Totals may not add due to rounding 18.2% Number of deaths from # lzheimer s disease in th leading cause of death in Illinois 2,919 Number of lzheimer s and dementia caregivers, hours of unpaid care, and costs of caregiving Year Number of Total Hours of Total Value of Higher Health Caregivers Unpaid Care Unpaid Care Costs of Caregivers For more information, view the 2016 lzheimer s Disease Facts and Figures report at alz.org/facts , ,000,000 $8,322,000,000 $350,000, , ,000,000 $8,163,000,000 $362,000, , ,000,000 $8,224,000,000 $375,000,000

7 Survey Participation TOTL NUMBER OF RESPONDENTS people people people TOTL COUNTIES REPRESENTED Counties Counties Counties RCE 2014 White % Chose not to identify % Black or frican merican % Hispanic or Latino % Two or more races % sian % Native Hawaiian or Pacific Islander % merican Indian or laskan Native... 0% 2015 White % Chose not to identify % Black or frican merican % Hispanic or Latino % sian % Native Hawaiian or Pacific Islander % merican Indian or laskan Native % 2016 White % Black or frican merican % Chose not to identify % Hispanic or Latino % Two or more races % sian % merican Indian or laskan Native % Other % 2014 Suburban % Urban/City % Small Town % Rural/Farm rea % 2015 Suburban % Urban/City % Small Town % Rural/Farm rea % 2016 Suburban % Urban/City % Small Town % Rural/Farm Town % 2014 Female...83% Male...17% 2015 Female...83% Male...17% COMMUNITY TYPE GENDER 2016 Female % Male % Prefer not to answer % SEXUL ORIENTTION 2014 Heterosexual % Prefer not to answer % LGBT % 2015 Heterosexual % Prefer not to answer % LGBT % 2016 Heterosexual % Prefer not to answer % LGBT %

8 alz.org geoptions lzheimer s ssociation, Central Illinois Chapter lzheimer s ssociation, St. Louis Chapter (serving parts of Illinois) lzheimer s ssociation, Greater Iowa Chapter (serving parts of Illinois) ssociation of Illinois Senior Centers Barrington rea Council on ging Center on Halsted Chinese merican Service League Coalition of Limited English Speaking Elderly Thank you to our survey distribution partners for their assistance in reaching diverse audiences throughout our state and helping us to obtain greater participation in the survey. Equality Illinois Illinois dult Day Services ssociation Illinois ssociation of Community Care Program Home Care Providers Illinois Council of Case Coordination Units Illinois Citizens for Better Care Illinois Public Health ssociation NCP Illinois Conference rthwestern University Feinberg School of Medicine - Cognitive Neurology and lzheimer s Disease Center Mano a Mano Family Resource Center McCormick Foundation Rush University Medical Center - Rush lzheimer s Disease Center and Rush Health and ging SEIU Healthcare Illinois Indiana Shawnee lliance for Seniors Southern Illinois University School of Medicine - Center for lzheimer s Disease and Related Disorders OUR MISSION To eliminate lzheimer s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. OUR VISION Our vision is a world without lzheimer s disease Bloomington/rmal 207 S. Prospect, Suite 1, Bloomington, Illinois Phone Carbondale 320 E. Walnut Street, Suite, Carbondale, Illinois Phone Chicago 8430 W. Bryn Mawr venue, Suite 800, Chicago, Illinois Phone Joliet 850 Essington Road, Suite 200, Joliet, Illinois Phone Peoria 612 West Glen venue, Peoria, Illinois Phone uincy 639 York Street, Room 200, uincy, Illinois Phone Rockford 1111 S. lpine Road, Suite 307, Rockford, Illinois Phone Springfield 2309 W. White Oaks Drive, Suite E, Springfield, Illinois Phone