Illinois Alzheimer's Disease State Plan 2014 Survey Results

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1 Illinois Alzheimer's Disease State Plan 2014 Survey Results Note: Formatted for 11X17 paper Q1. How familiar are you with services and programs provided by or supported by the State of Illinois that address the needs of individuals with Alzheimer's disease or a related dementia? Very Familiar 11.0% 81 Somewhat Familiar 36.4% 268 Not Very Familiar 30.4% 224 Not At All Familiar 22.1% 163 answered question 736 skipped question 0 Q2. What programs or services supported by funding from the State of Illinois that improve quality of life for those with Alzheimer's disease and related dementias have you used? (choose all that apply) Home Delivered Meals 7.9% 56 Prescription Drug Assistance 10.2% 72 Homemaker Services 9.8% 69 Specially designated care units for dementia in a nursing home 19.7% 139 Transportation 6.6% 47 Adult Day Services 15.6% 110 Case Management Services 9.6% 68 Companion Services 6.4% 45 I have not used any Illinois programs in the past 67.2% 475 answered question 707 skipped question 29 Q3. Thinking about current policies and programs of the State of Illinois to address Alzheimer's, would you say that they are... to address Alzheimer's and related dementias in Illinois? (fill in the blank) Doing More Than Enough 0.7% 5 Doing Enough 4.2% 29 Not Doing Enough 34.0% 235 Not Doing Anywhere Close to Enough 29.7% 205 I Really and Truly Don't Know 31.4% 217 answered question 691 skipped question 45

2 Q4. When thinking about Illinois policies to help people with Alzheimer's and their care partners, which policy is most important? (choose just one) Funding and Support for Alzheimer's Research 13.7% 92 Programs and Services for Individuals with Alzheimer's Who Have Limited Financial Resources 24.7% 166 Support Programs and Services for All Caregivers 10.4% 70 Affordable In-Home Services for Individuals with Alzheimer's 24.7% 166 Improving Care Quality in Residential Settings like Nursing Homes or Assisted Living Facilities 12.2% 82 A More Professional Workforce with Knowledge of How to Care for Those with Alzheimer's 8.0% 54 A Central Point of Alzheimer's Information and Referral 6.4% 43 answered question 673 skipped question 63 Q5. The State of Illinois should spend...money looking for effective ways to treat and cure Alzheimer's. (fill in the blank) Significantly More 48.9% 325 Somewhat More 25.9% 172 About the Same 9.8% 65 Somewhat Less 0.6% 4 Significantly Less 0.6% 4 This is not a state responsibility. 14.2% 94 answered question 664 skipped question 72 Q6. The State of Illinois should spend...money funding programs that provide Alzheimer's or related dementia care services to anyone in need. (fill in the blank) Significantly More 52.0% 344 Somewhat More 33.0% 218 About the Same 8.3% 55 Somewhat Less 0.2% 1 Significantly Less 0.3% 2 This is not a state responsibility 6.2% 41 answered question 661 skipped question 75

3 Q7. Should the State of Illinois provide tax credits for the purchase of long-term care insurance? Yes 86.2% 569 No 13.8% 91 answered question 660 skipped question 76 Q8. Should the State of Illinois restrict driving for anyone with a diagnosis of Alzheimer's disease? For Anyone with a Formal Diagnosis 32.9% 217 Let Their Doctor Determine When it is Time to Stop Driving 50.4% 332 Let Their Family Determine When it is Time to Stop Driving 15.6% 103 Only After Receiving a Traffic Ticket or an Accident 1.1% 7 answered question 659 skipped question 77 Q9. Thinking about services available for individuals with Alzheimer's disease that may or may not be supported by the State of Illinois, which do or would you VALUE the most -- even if it isn't currently available? (please rank all possible answers) Rating Response Answer Options Average Count Adult Day Center for Individuals in Middle/Later Stages of Alzheimer's Nursing Homes with Specialized Care Units Respite Care Programs More Housing Options (other than Nursing Homes) In-Home Programs (Nursing/Medical Care/Personal Care/Companion Services) Prescription Drug Programs Transportation Programs answered question skipped question Q10. If the State of Illinois were to make available more HOME AND COMMUNITY BASED services, which would be most important to you? (please rank) Rating Response Answer Options Average Count Adult Day Centers Respite Care Programs In-Home Programs (Nursing/Medical Care) In-Home Personal Services (Bathing, Toileting, Eating, Cooking, etc.) In-Home Companion Services Home Delivered Meals Prescription Drug Assistance Home Energy Assistance answered question skipped question

4 Q11. If the State of Illinois were to improve care for people in NURSING HOMES, what would be the best first step to achieve that? More Training for Staff in Quality Care Techniques 22.7% 137 Improve Enforcement of Regulations and Oversight of Nursing Homes by Qualified State Surveyors 10.8% 65 More Staff Required in Nursing Homes to Care for People 22.4% 135 Residents with Dementia Can Only be Accepted if Staff have a Minimum Number of Hours of Training in Dementia Care 14.4% 87 Improve Partnerships Between Nursing Home and Family Around Care of Resident 9.9% 60 Improve/Publish the List of Available Nursing Homes Serving People with Alzheimer's and Other Dementias 9.3% 56 Expand Availability of Nursing Home Ombudsmen with Specialized Knowledge of Alzheimer's Care 10.6% 64 answered question 604 skipped question 132 Q12. When it comes to getting information about Alzheimer's disease which of the following do YOU trust the most? (Choose One) My Doctor 18.0% 109 The State of Illinois 0.3% 2 The Alzheimer's Association 64.7% 391 My County Health Department 0.3% 2 The Media 1.2% 7 Online Sources like WebMD 3.1% 19 Leading Scientists and Researchers 12.3% 74 answered question 604 skipped question 132 Q13. How difficult was it for you or a loved one to get a diagnosis from a local doctor? Impossible -- had to travel to another city 1.0% 6 Very Difficult -- there were few doctors to choose from 9.1% 55 Somewhat Difficult 21.6% 130 Somewhat Easy 25.4% 153 Very Easy - there were lots of doctors to choose from 8.1% 49 This question does not apply to me. 34.8% 210 answered question 603 skipped question 133

5 Q14. When you or a loved one was given the diagnosis, was helpful information about care planning, community resources or referrals to the Alzheimer's Association or other organizations provided? No, no information was shared 29.9% 179 Information about the Alzheimer's Association was shared 16.7% 100 Information about community resources was shared 13.0% 78 Referrals were made directly to the Alzheimer's Association 2.5% 15 Referrals were made directly to other community organizations 3.8% 23 This question does not apply to me 40.6% 243 answered question 599 skipped question 137 Q15. How would you rate the availability of services for people with Alzheimer's or a related dementia in your area? We can't find any services locally 4.7% 28 There are a few services but they are very expensive 25.7% 154 There are a few services that are affordable 18.7% 112 There are adequate services but they are too expensive 12.2% 73 There are adequate services and they seem affordable 5.0% 30 We have lots of options at all price ranges 3.3% 20 We don't know what the services in our area are like 30.4% 182 answered question 599 skipped question 137 Q16. How did you learn about community services that are available in your area? (choose all that apply) Media 11.8% 70 Word of mouth/family and friends 43.8% 260 The Alzheimer's Association 45.1% 268 The Area Agency on Aging 18.5% 110 My Religious Organization 2.7% 16 My Doctor or my Doctor's staff 19.2% 114 My Senior Center 7.6% 45 My County's Health Department 5.2% 31 Comments - see "other" below 102 answered question 594 skipped question 142 Other (please specify) internet search and talking to Everyone support group A hired advocate Local Alzheimer's Support Group internet research experience NIAA web

6 Support Group work also social worker at the hospital I have worked as an elder adult specialist social worker for 30 years my work my workplace Cigna Healthcare I don't know what services are available. I researched them myself my own research NA this? does not apply to me Agencies working with the aging population we are a primary provider test site for SIU Dr had me talk to Orlinda at our local hospital CADRD We read and researched on our own. Finally we found out about The Alzheimer's Association where we were able to get help. on line research Don't know of any online out of area occurance - from many of the sources listed above Internet research Social services department of nursing home rehab Word of mouth volunteer in senior services Google Every place dealing with seniors provided information I don't know. I donated in memory of my mother's friend I work at an Assisted Living Facility for Memory Care Internet on-line services and the newspaper does not apply web and the Alzheimers Family Care Center Best Sources= ***INTERNET, ***Alzheimers Research Unit at Hospital I didn't learn Researched them myself A nurse that knew I was looking for information assist me. Searching the internet for hours at a time. don't know I am a RN & I went to & was a part of the local resources to help people in my area & my care of my mother Neighbor that works for the county we live in Employee assistance program through work Does apply to me or my family. n/a online research fliers left in libraries extensive searching online - I'm a lawyer and it wasn't easy to find information have not researched that yet I am a facilatator for the Alzheimer's Assoc. I lead a support group for caregivers/families Have no need at this time. Not needing an ALZ assistance at this time, so have not asked. The home for the aged that my mother was living in. Internet i am a nursing home coordinator for a geriatric psychiatry practice from support group at day care service my own research Online research of facilities and organizations that provided care for the elderly and cold calling

7 I am a Senior Advocate in a local hospital and am involved in local organizations that provide services to seniors as well as on the board of my local AAA. the hospital where my mom was after she broke her hip I am an LCSW work in nursing facility I am not knowledgeable about the available services Elder Law Attorney Sibs all spent a lot of time researching on the internet for Dad's care. brochures handed to us at a moment of crisis Alz.support group I went online and researched myself I am an eldercare health care professional with extended family member who has an AD diagnosis From my former NFP job Hospital I am not aware of any I have never checked My sister is a geriatric social worker. Basically searching on my own for what was available for my Mom I work with Dementia and Alzheimer's patients. saw advertisement on the facility nursing home Northwestern's CNADC Google Care Coordination Unit for state CCP program online search Driving down the street, a care center a mile from my house visited Gowin Parc My Alzheimer's support Village managed a specialized unit internet search my own research Relative's independent living facility I'm pretty ignorant in this field doesnt apply to me Internet Affordable Assisted Living Coalition i work in long term care don't know what's available Live in Heritage Woods who put up a new Memory Center. My Mom had dementia and we had Loyola doctors who were very helpful. PLOWS Q17. Please tell us your gender. Male 18.0% 107 Female 82.0% 487 answered question 594 skipped question 142

8 Q18. Please tell us about your experience with Alzheimer's or a related dementia. (choose all that apply) I have Alzheimer's disease or a related dementia 0.8% 5 My spouse/partner has Alzheimer's disease or a related dementia 7.6% 45 My grandparent has Alzheimer's or a related dementia 14.6% 87 My parent has Alzheimer's or a related dementia 51.0% 303 My sibling has Alzheimer's or a related dementia 2.2% 13 My aunt, uncle or cousin has Alzheimer's or a related dementia 14.1% 84 A close friend has Alzheimer's or a related dementia 10.3% 61 I do not have personal experience with Alzheimer's or a related dementia 7.9% 47 I am a professional who is employed in the field of Alzheimer's care, support or research 24.4% 145 answered question 594 skipped question 142 Q19. What is your age? Under % % % % % % % % % % % 26 answered question 593 skipped question 143 Q20. Which best describes the community you live in? Urban/City 31.0% 184 Suburban 46.4% 275 Small Town 15.5% 92 Rural/Farm Area 7.1% 42 answered question 593 skipped question 143

9 Q21. What Illinois County do you live in? (note: counties not listed had 0 respondents) County Count Adams 3 Boone 3 Bureau 2 Carroll 2 Cass 2 Champaign 9 Christian 1 Clark 1 Clinton 1 Coles 4 Cook 226 Crawford 2 DeKalb 2 DeWitt 1 DuPage 53 Edgar 5 Effingham 4 Franklin 1 Fulton 1 Hancock 1 Henry 2 Iroquois 2 Jackson 1 Jefferson 3 Jersey 1 Jo Davis 1 Johnson 2 Kane 16 Kankakee 2 Kendall 5 Knox 4 Lake 41 LaSalle 2 Livingston 3 Logan 1 Macon 6 Macoupin 6 Madison 12 McDonough 3 McHenry 15 McLean 11 Menard 1 Monroe 2 Montgomery 3 Morgan 5 Ogle 4 Peoria 18 Pike 1 Richland 1 Rock Island 1 Sangamon 15 St, Clair 7

10 St. Louis 1 Stephenson 3 Tazewell 6 Union 2 Vermilion 3 Wabash 1 White 2 Whiteside 1 Will 21 Williamson 5 Winnebago 22 Woodford 1 Total Counties Represented = 64 Q22. What is your race or ethnicity? I choose not to identify 6.4% 38 American Indian or Alaskan Native 0.0% 0 Asian 1.9% 11 Black or African American 5.1% 30 Hispanic or Latino 2.7% 16 Native Hawaiian or Pacific Islander 0.0% 0 White 82.4% 488 Two or more races 1.5% 9 answered question 592 skipped question 144 Q23. Have you ever spoken to one of the following about Alzheimer's policy? (choose all that apply) An Elected Official 15.7% 93 The Media 8.3% 49 A Group within Your Religious Organization 10.6% 63 Your Club 5.4% 32 Your Friends or Family 55.7% 330 At Work 35.5% 210 No, I have never spoken to others about Alzheimer's policy 34.1% 202 answered question 592 skipped question 144

11 Q24. Would you like to attend a lobby day in Springfield or Washington, D.C.? (If the answer is yes or maybe, be sure to include your contact information at the end of this survey so that we may send you information on lobby day activities.) Yes 11.2% 66 No 64.5% 381 Maybe 24.4% 144 answered question 591 skipped question 145 Q25. Thank you for participating in this survey. Your responses will help us craft a state plan that is responsive to the needs of all Illinois residents and reflects the opinions shared. Providing the following information is optional. Sharing your name and address will allow us to include you on future S regarding state and federal Alzheimer's policy and provide you with opportunities to take action and participate in Alzheimer's advocacy work. Your home address is very important. By sharing your home address, we can include you on Action Alerts that target your specific legislators. Data not provided to ensure privacy of survey participants. Name: 96.5% 279 Home Address: 93.4% 270 Address 2: 8.7% 25 City/Town: 96.2% 278 State: 98.3% 284 ZIP: 96.2% 278 Address: 90.7% 262 Phone Number: 62.6% 181 answered question 289 skipped question 447

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