State of Illinois lzheimer s Disease nnual Survey Dear Friends, Emerging from our third year of conducting this survey, I am pleased to share with you the results of the 2015 State of Illinois lzheimer s Disease Survey. First and foremost, we increased participation by 34 percent to a total of 1559 respondents residing in 72 Illinois counties. The input from individuals across our diverse state is valuable as the lzheimer s ssociation strives to serve and represent more individuals every year. The continued growth of this survey demonstrates the ravaging effects lzheimer s disease has on Illinois families. Moving forward, the lzheimer s ssociation, along with our partners, will use the results of this survey as we craft our legislative agenda for the 2016 Illinois General ssembly legislative session. s we disseminate the publication of this report, our State is now entering its third month with no budget. While solutions for Illinois perpetual budget problems are debated, the responses from those surveyed show how the dire fiscal realities of state government are affecting the nearly 800,000 people impacted by lzheimer s disease. The lzheimer s ssociation, however, continues to work diligently with our policymakers in Springfield to better the lives of this ever-growing population. Below are a few points I found particularly important to highlight: 1. For three years now, fewer than half of the survey respondents were familiar with programs and services offered by the state of Illinois. Unfortunately this year the percentage of these respondents registered at an all-time high, hitting nearly 60 percent. Education of state services continues to lack and at the detriment of individuals receiving the care they need. 2. Survey respondents continued their overwhelming believe that Illinois is not doing enough to address lzheimer s disease and related dementia s. In 2014, a low 4.8 percent of those surveyed believed Illinois was doing enough to address lzheimer s. This year the number fell to an abysmal 1.67 percent (66.82 percent believed Illinois was not doing enough). While these numbers are troubling, it is reflective of the lack of commitment by our state government in crucial programs needed to support this population. 3. Nearly 84 percent of respondents are not familiar with what their local state representative or state senator are doing to address the needs of their constituents with lzheimer s disease and related dementias. This question was added this year to supplement our conversations with state legislators regarding the growing need to confront lzheimer s in Illinois government. 4. Respondents were somewhat evenly split on what policy they d like the lzheimer s ssociation to pursue in Springfield. With that said, two important policy reforms topped the list. First, 24.38 percent of respondents believe we must act to stop uncertified facilities from advertising an expertise in dementia care. In second with 23.38 percent, was establishing new transfer/discharge regulations to ensure those with lzheimer s are not transferred or discharged solely because they exhibit disruptive behavior. Thank you to everyone who took the time to respond to the survey. Many thanks to our official survey partners for their help in disseminating the survey. We could not have continued our success without your help in reaching a wider, more diverse network of respondents. For a complete list of our partners, please visit the back page of this report. While some of these results are worrisome, the lzheimer s ssociation is fully dedicated to working with both legislators and state agencies to remedy both the lack of services and awareness surrounding this public health crisis. With your help we look forward to translating these results into legislative action to make Illinois a dementia capable state. Sincerely, Erna E. Colborn President and CEO lzheimer s ssociation, Greater Illinois Chapter For a complete set of 2015 lzheimer s Disease State Plan Survey Resources, visit our website at www.alz.org/illinois and click on the link entitled dvocate to find SURVEY information, including: pdf copy of the 2013, 2014 and 2015 survey reports The complete data set from all years Press release reflecting highlights from the 2015 survey 8430 West Bryn Mawr venue, Suite 800, Chicago, IL 60631 847.933.2413 800.272.3900 www.alz.org/illinois alzil.mobi
Section 1 Profile of 2015 Survey Participants 72 Counties Represented ge of Respondents UNDER 30 30-39 40-49 50-59 60-69 70+ 4.18% 7.45% 12.69% 31.12% 31.12% 13.43% 10% 20% 30% 40% Counties where respondents live Communities 50% 40% Race/Ethnicity 7.98% Chose not to identify 1.98% sian 6.58% Black or frican merican 4.03% Hispanic or Latino Sexual Orientation Heterosexual...81.55% 30% 20% 78.93% White LGBT...4.07% Prefer not to answer...14.36% 10% Urban/ City 29.51 Suburban 47.35 Small Town 15.33 Rural/ Farm rea 7.79.16% merican Indian or laskan Native.33% Native Hawaiian or Pacific Islander 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 847.779.6957 or jbelkov@alz.org
Section 2 Illinois lzheimer s Policy Implications How familiar are you with services and programs provided by or supported by the State of Illinois that address the needs of individuals with lzheimer s disease or a related dementia? 8.92% 32.46% 32.78% 25.85% Very familiar Somewhat familiar Not very familiar Not at all familiar Do you support a state minimum requirement of training hours for nurses and nursing home staff who care for residents with lzheimer s or other dementias? Thinking about current policies and programs of the State of Illinois to address lzheimer s, would you say that they are...to DDRESS lzheimer s and related dementias in Illinois? (Fill in the blank.) When thinking about Illinois POLICIES to help people with lzheimer s and their care partners, which policy is most important? (Choose just one.) 39.42% 13.17% 27.48% 19.93% ffordable in-home services for individuals with lzheimer s 95.26% Yes 66.82% 31.51% 1.67% Doing enough Not doing enough I don t know Support programs and services for all caregivers Programs and services for individuals with lzheimer s who have limited financial resources 4.74% No Improving care quality in residential settings like nursing homes or assisted living facilities
If the State of Illinois were to improve care for people in NURSING HOMES, what would be the best first step to achieve that? 28.91% 15.27% 29.35% 16.69% 9.88% More training for staff in quality care techniques Improve enforcement of regulations and oversight of nursing homes by qualified state surveyors Increase patientto-nurse staffing ratios Residents with dementia can only be accepted if staff have a minimum number of hours of training in dementia care The State of Illinois should spend...money funding programs that provide lzheimer s or related dementia care services to anyone in need. (Fill in the blank.) Video monitoring in patient rooms 87.41% 11.65% More bout the same.094% Less re you familiar with what your state representative or state senator are doing to address the needs of individuals with lzheimer s disease and related dementias? 16.72% 83.6% Yes No Should the State of Illinois restrict driving for anyone with a diagnosis of lzheimer s disease? 78.89% Yes 21.11% No If you could choose one policy for the lzheimer s ssociation to pursue in the State of Illinois, which would it be? 13.6% First responder training on how to address and treat someone with lzheimer s or dementia 15.09% Tax credits for long-term care insurance 19.32% minimum amount of training hours in lzheimer s and dementia care for in-home care workers 4.23% Training for financial service workers (bank tellers, credit unions, etc.) to spot financial exploitation or cognitive impairment 24.38% Change state regulations to mandate certification of any facility advertising an expertise in dementia care 23.38% Establish long-term care transfer/discharge regulations on a state level and ensure persons with lzheimer s or related dementias are not transferred or discharged solely because they exhibit disruptive behavior
Save the Date! Thursday, pril 14, 2016 Join us in Springfield to make a difference in the fight against lzheimer s! n Your voice and your story matter as we compel our legislators to engage in the fight for a world without lzheimer s. n Transportation and meal(s) provided. n ll you need is passion no experience necessary! Illinois ction Summit Thursday, pril 14, 2016 Save the Date! Illinois Chapter Network
Section 3 lzheimer s wareness and ccess When it comes to getting information about lzheimer s disease, which of the following do YOU trust the most? (Choose one) 12.55% 58.7% My doctor The lzheimer s ssociation How difficult was it for you or a loved one to get a diagnosis from a local doctor?.067% My county health department.097% The Media 17.63% Leading scientists and researchers 50.68% 44.6% When you or a loved one was given the diagnosis, was helpful information about care planning, community resources or referrals to the lzheimer s ssociation or other organizations provided? 56.55% No, no information was shared 23.39% 19% Information about the lzheimer s ssociation was shared How would you rate the availability of services for people with lzheimer s or a related dementia in your area? 6.99% We can t find any services locally Difficult 42% There are services, but they are very expensive 14.7% There are services that are affordable Easy 36.31% We don t know what the services in our area are like 4.72% Impossible Information about community resources was shared
Survey Distribution Partners 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) RP Illinois 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: geoptions ccess Living lpha Kappa lpha Sorority Barrington rea Council on ging Chinese merican Service League Effingham rea lzheimer s wareness Illinois Public Health ssociation Lutheran Social Services of Illinois Monroe Foundation NCP National ssociation of Social Workers - Illinois Chapter Northeastern Illinois gency on ging Northwestern University Feinberg School of Medicine - Cognitive Neurology and lzheimer s Disease Center Rush University Medical Center - Rush lzheimer s Disease Center and Rush Health and ging Southern Illinois University School of Medicine - Center for lzheimer s Disease and Related Disorders West Suburban Senior Services 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 800.272.3900 alz.org/illinois alzil.mobi lzheimer s disease Bloomington/Normal 207 S. Prospect, Suite 1, Bloomington, Illinois 61704 Phone 309.662.8392 Carbondale 320 E. Walnut Street, Suite, Carbondale, Illinois 62901 Phone 618.985.1095 Chicago 8430 W. Bryn Mawr venue, Suite 800, Chicago, Illinois 60631 Phone 847.933.2413 Joliet 850 Essington Road, Suite 200, Joliet, Illinois 60435 hone 815.744.0804 Rockford 1111 S. lpine Road, Suite 307, Rockford, Illinois 61108 Phone 815.484.1300 Springfield 2309 W. White Oaks Drive, Suite E, Springfield, Illinois 62704 Phone 217.726.5184
Illinois lzheimer s Statistics Over 5 million mericans are living with lzheimer s, and as many as 16 million will have the disease in 2050. The cost of caring for those with lzheimer s and other dementias is estimated to total $226 billion in 2015, 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 Totals may not add due to rounding Year 65-74 75-84 85+ TOTL Percentage change from 2015 2015 29,000 89,000 96,000 210,000 2020 35,000 98,000 98,000 230,000 2025 38,000 120,000 110,000 260,000 50 40 30 20 10 0 9.5% 23.8% 2015 2020 2025 % Percentage of seniors with lzheimer s disease 12% # Number of deaths from lzheimer s disease in 2012 2,919 6 th leading cause of death in Illinois $$ Number of lzheimer s and dementia caregivers, hours of unpaid care, and costs of caregiving Year # of Caregivers Total Hours of Unpaid Care Total Value of Unpaid Care Higher Health Costs of Caregivers 2012 584,000 665,000,000 $8,202,000,000 $343,000,000 2013 587,000 668,000,000 $8,322,000,000 $350,000,000 2014 589,000 671,000,000 $8,163,000,000 $362,000,000 For more information, view the 2015 lzheimer s Disease Facts and Figures report at alz.org/facts.