Community Collaborations for Assisting People with Alzheimer’s and Dementias: The Steps to Success 2014 ACL/CDC/NIA Alzheimer’s Webinar Series August 28, 2014

ACCREDITATION STATEMENTS CNE: The Centers for Disease Control and Prevention is accredited as a provider of Continuing Nursing Education by the American Nurses Credentialing Center's Commission on Accreditation. This activity provides 1.5 contact hours. CEU: The Centers for Disease Control and Prevention is authorized by IACET to offer 0.2 CEU's for this program. CECH: Sponsored by the Centers for Disease Control and Prevention, a designated provider of continuing education contact hours (CECH) in health education by the National Commission for Health Education Credentialing, Inc. This program is designated for Certified Health Education Specialists (CHES) and/or Master Certified Health Education Specialists (MCHES) to receive up to 1.5 total Category I continuing education contact hours. Maximum advanced level continuing education contact hours available are 0 CDC provider number GA

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If you have any questions or problems accessing the continuing education, please contact: CDC/ATSDR Training and Continuing Education Online TRAIN at 7

8 Contact Materials available Fall 2014 Recruiting Older Adults into Research – ROAR (ACL-NIH-CDC)

9 Go to: org/roar org/roar You must have an address to sign up. You can call if you need help with online registration. ResearchMatch

10 Olivia Mastry, Executive Lead ©2014 Equipping and Engaging Communities to Address the Impacts of Alzheimer’s

11 statewide collaborative volunteer driven 60+ ORGANIZATIONS 400+ INDIVIDUALS IMPACTS OF ALZHEIMER’S BUDGETARYSOCIAL PERSONAL What is ACT on Alzheimer’s?

Collaborative Goals/Common Agenda 5 shared goals with a Health Equity perspective 12

13 Identify/Invest Economic model to identify care approaches that slow costs Initially use model to estimate savings for in-person caregiver support Results reflected in Health Affairs and subsequent Net Savings analysis impact Identify and Invest in Promising Approaches

14 Develop and disseminate Practice Tools that support providers in detecting, treating and managing dementia Develop interdisciplinary dementia curriculum that embeds tools care Detection/Care Increase Detection and Improve Care

15 Primary care providers Care coordinators Community-based organizations Persons with AD; care partners Direct care service staff trainers Mid-Late stage providers Professional school faculty Electronic record providers practice-tools Detection/Care Audiences for Provider Practice Tools

16 Enhancements to website, ® Dementia-capable Senior LinkAge Line® staff and caregiver coaches After a Diagnosis Tool Sustain Caregivers

17 Develop a Community Toolkit to foster dementia-friendly communities Support community implementation of the toolkit Equip Communities Equip Communities and Raise Awareness

18 All sectors are informed, safe and respectful and foster quality of life Dementia-Friendly Community

19 Informed by research regarding stages of community readiness and engagement Initiate mobilization Establish organizational structure Build capacity for action Plan for action Implement Refine Institutionalize Action Outcomes Structure Leadership Foundation for Community Toolkit

20 1.Convene key community leaders and members to form an Action Team. 2.Assess current strengths and gaps within the community. 3.Analyze findings to understand your community’s needs and develop a plan to take action. 4.ACT Together to pursue priority goals that foster community readiness for dementia. Four-Phase Toolkit Process

21 Convene Phase: Build Action Team

22 Sectors: Adult day Caregiver support providers Employers/businesses Health providers Legal and financial planners Local government Residential settings Social service agencies Transportation Faith communities Define your community Determine who to survey and who will survey Target sectors Include diverse populations Assess Phase: Actions Needed

23 Look for High Priority, Low Activity areas of need Analyze Phase: Planning for Action

ACT Together Phase: Prioritize, Plan and Implement Action communities are: Creating dementia- friendly businesses Training Dementia Friends Training health care providers on ACT tools Training local emergency responders Creating memory cafés Increasing awareness Developing Rabbi training Hosting a caregiver conference Training teens within the Jewish community Training government on planning and response 24

25 32 Action Communities Communities ACTing on Alzheimer’s

Collaborative Learnings No one owner. Consistent project support, coordination and communications. Collective impact structure. Transparency and inclusiveness. Diverse participants and funders. Reporting progress to foster engagement. 26

Contact Us Learn more at Questions? 27

COMMUNITY COLLABORATIONS FOR ASSISTING PEOPLE WITH ALZHEIMER'S AND DEMENTIAS: THE STEPS TO SUCCESS ILLINOIS COGNITIVE RESOURCES COLLABORATION (ICRN) National Institute on Aging – CDC – Administration for Community Living Webinar (August 28, 2014)

Illinois Cognitive Resources Network VISION: The Illinois Cognitive Resources Network (ICRN) will make Illinois a national leader in the development and implementation of effective community-based models for adults to access research, education, training, and support services to promote cognitive health and quality of life. MISSION: The Collaboration will leverage strengths of Alzheimer’s Association chapters, Alzheimer’s Disease Assistance Centers, and organizations in the Aging, Disability, and Public Health Networks to optimize the cognitive and functional well- being of Illinois residents and their families. Illinois Cognitive Resources Network (ICRN) 29

Organization Each group will give something of value to help other collaboration members and the Illinois residents they serve and each group will receive something back to meet its individual goals. Public Health Network Aging Network Disability Network Health Service Providers Volunteer Health Organizations Illinois Families Illinois Cognitive Resources Network (ICRN) 30

Overview  Why the Illinois Cognitive Resources Network (ICRN) came together  What has kept the ICRN together  Progress to date in helping individuals, families and professionals access research, education, training and support services Illinois Cognitive Resources Network (ICRN) 31

Illinois Cognitive Resources Network -- Why  Many residents in Illinois feel disconnected when obtaining services regarding cognitive health.  Also, many service providers feel disconnected from other service providers. They feel that their services are not being fully utilized.  It is not clear how best to translate national agendas and efforts into statewide and local community efforts. Illinois Cognitive Resources Network (ICRN) 32

National Agendas for Cognition  Healthy People 2020  National Alzheimer’s Project Act and National Plan to Address Alzheimer’s Disease  Healthy Brain Initiative Illinois Cognitive Resources Network (ICRN) 33

Staying Together  Regular monthly meeting forum for exchange of ideas and opportunities to collaborate.  Significant collaborative effort to define a common language.  Developing a name, vision, and mission statement.  Constant feedback stakeholder leadership groups.  Short-term steps to build momentum for long-term goals. Illinois Cognitive Resources Network (ICRN) 34

Progress in Activities  Support of Public Surveys on Aging and Cognition  Education and Training  Input on State Programs  Dissemination at National Meetings  Obtaining Innovation Funds Illinois Cognitive Resources Network (ICRN) 35

Public Surveys  Support of Public Surveys on Aging and Cognition  World Health Organization Age-Friendly Cities and Chicago Resident Surveys  State of Illinois Alzheimer’s Disease Annual Survey Illinois Cognitive Resources Network (ICRN) 36

Education and Training  Presentations about dementia capable state activities and dementias at Governor’s Conference on Aging  Training DVD on engaging clients with potential cognitive impairment for Aging Network Case Workers  Presentations on Alzheimer’s disease for the Illinois Public Health Association  Presentation on cognitive assessment in Medicare Annual Wellness Visit at Illinois Academy of Family Practice Annual Meeting  Recruiting Older Adults into Research Pilot Testing Illinois Cognitive Resources Network (ICRN) 37

Input  Input on State Programs  Strategies to Help Case Workers in Aging Network Triage Information Collected in Home and Community Based Services Eligibility Assessments  Completion of Request for Information about Uniform Assessment Tool for Service Eligibility Illinois Cognitive Resources Network (ICRN) 38

Dissemination  Dissemination at National Meetings  Poster at Gerontology Society of America Annual Meeting  Interactive Seminar to address collaboration barriers at American Society on Aging Annual Meeting Illinois Cognitive Resources Network (ICRN) 39

Funding  Obtaining Innovation Funds  Dementia-Capable State  Healthy Brain Initiative Roadmap Implementation Illinois Cognitive Resources Network (ICRN) 40

1. Develop and maintain dementia-capable access and referral services; 2. Train Aging Network and Adult Protective Services personnel, SHIP sites, Supportive Living Program facilities, and Managed Care agencies on the components of dementia-capable service delivery systems; 3. Implement Options Counseling services on a statewide basis; 4. Conduct Savvy Caregiver training in selected Planning and Service Areas; Dementia-Capable State Grant Objectives Illinois Cognitive Resources Network (ICRN) 41

5. Link individuals with dementia and their caregivers to a comprehensive set of dementia-capable services including care transition services; 6. Streamline the dementia capable public program eligibility determination process; 7. Develop a data collection and quality assurance system; and, 8. Ensure sustainability of the dementia-capable home and community-based service system. Dementia-Capable State Grant Objectives (Cont.) Illinois Cognitive Resources Network (ICRN) 42

The Illinois Department of Health, in partnership with other key stakeholders, will implement three of the six priority action items from The Healthy Brain Initiative Roadmap in Illinois and update a central public webpage. 1. Use data to enhance awareness of cognitive loss burdens for persons and their caregivers. 2. Develop strategies to ensure expertise in cognitive health by assessing competencies in state funded organizations 3. Prioritize implementation of recommendations in the Illinois Alzheimer’s Disease State Plan One-year grant from the National Association of Chronic Disease Directors’ “Opportunities Grants to Implement Selected Action Items from The Healthy Brain Initiative: The Public Health Road Map, ” ( ) Healthy Brain Initiative Implementation Illinois Cognitive Resources Network (ICRN) 43

Conclusions  State-wide, diverse and inclusive, “community of care” groups are needed to best meet the needs of persons living with or at risk for cognitive loss and their support systems.  Early trust-building and open-communication efforts can lead to a significant process of improvement.  We hope Illinois Cognitive Resources Network can serve as a continuing example of a model that can be translated to other States/communities.  We are continuing to learn and evolve together in order to improve the quality of life for residents of Illinois. Communities Persons & Families Health Care Providers Researchers Illinois Cognitive Resources Network (ICRN) 44

Illinois Cognitive Resources Network – Contact Information Raj C. Shah, MD Associate Professor, Family Medicine and Rush Alzheimer’s Disease Center Rush University Medical Center 600 South Paulina, Suite 1022 Chicago, Illinois Illinois Cognitive Resources Network (ICRN) 45

Acknowledgements  Aging Network: Area Agencies on Aging – Age Options/Suburban Cook, City of Chicago, Lincolnland, & Northwestern Illinois; Illinois Association of Area Agencies on Aging (I4A); Illinois Department on Aging; Rush Health and Aging  Alzheimer’s Association: Central Illinois; Greater Illinois; Greater Iowa; St. Louis Chapters 46 Illinois Cognitive Resources Network (ICRN) 46

Acknowledgements (Cont.)  Alzheimer’s Disease Assistance Centers: Northwestern University Feinberg School of Medicine - Cognitive Neurology and Alzheimer’s Disease Center; Rush University Medical Center - Rush Alzheimer’s Disease Center; Southern Illinois University School of Medicine - Center for Alzheimer’s Disease and Related Disorders;  Disability Network: Department of Human Services, Division of Rehabilitation Services, Bureau of Home Services  Public Health Network: Illinois Department of Public Health; Illinois Public Health Association 47 Illinois Cognitive Resources Network (ICRN) 47

Dementia Screening Tool Silver Alert Massachusetts Executive Office of Elder Affairs Community Alzheimer’s Partnerships

Guiding Policies Massachusetts Alzheimer’s Plan Recommendations Improve access to services and information for people with Alzheimer's Improve and expand support and education for Family Caregivers Develop an infrastructure for enhanced quality of services within the medical community Improve public awareness surrounding risk factors and risk reduction for Alzheimer's disease Create a set of statewide recommendations, guidelines and minimum standards surrounding quality of care in all care settings 49

Guiding Policies (cont.) Standards of Dementia Care A set of standards requiring that: All home care consumers are screened for dementia and depression Consumers with dementia and their caregivers are provided with a risk assessment, provided with a care plan with services that address their dementia, and referred for medical care All home care staff must receive specialized dementia training under the standards. 50

Dementia Screening Tool Word recall exercise Clock drawing exercise Scale of 1-5: 0, 1 or 2 indicates a possible memory impairment 51

Results Since rollout in Spring 2011: Program managers and nurse managers trained 40,000 unique consumers screened Approximately 25 percent scored a two or lower and were referred for further diagnosis and services Letter sent, with permission, to Primary Care Provider 52

Results (cont.) All low scorers received a risk assessment, including determination of measures to minimize risk and identification of resources to implement those measures Average cost of home care services increased from $377 to $539 — 43 percent. 53

Challenges Physicians not responding to the letter  Working with Alzheimer’s Association and Aging Services Access points to rewrite letter  Launching a pilot at 4 Aging Services Access points to improve communication between home care staff and physicians’ offices Twelve months too frequent? 54

Silver Alert Massachusetts 2010 Silver Alert Law “The silver alert system shall be used, when appropriate, to alert public safety departments and private safety departments, when an adult with serious memory impairment such as Alzheimer’s disease or other dementia is reported to a police department as a missing person.” 55

Silver Alert Work Group Representatives from: Massachusetts State Police Massachusetts 911 Massachusetts Association of Chiefs of Police Massachusetts Executive Office of Elder Affairs Alzheimer’s Association, MA/NH Chapter Communication * Training * Data 56

Training MA 911 working on training for dispatchers Silver Alert training for families   Search: “massachusetts silver alert” Will later pursue strategies to distribute web- based law enforcement training 57

Database Pilot Objective: To determine whether registering people who are at risk of wandering in a database is helpful in improving identification, communication and safe return of people who have become lost. 58

Database Pilot (cont.) 12 police agencies taking part Convened by:  MA Executive Office of Elder Affairs  Massachusetts Association of Chiefs of Police  Alzheimer’s Association. MA/NH Chapter Also taking part:  Aging Services Access Points  Councils On Aging 59

Contact: Adam Frank Massachusetts Executive Office of Elder Affairs 1 Ashburton Place, Fifth Floor Boston, MA (617)

Registration for 2014 Webinar Series is at capacity; Slides, audio and transcript will be posted on-line, generally within 2 weeks after the live webinar. Free CE for Webinar 1 will be available for up to 2 years after the live webinar. Slides, audio and transcript for 2012, 2013 & 2014 webinar series available under Resources and Useful Links at: ants/index.aspx#resources 61 Questions?