National Plan to Address Alzheimer’s Disease: State/Local Implementation Opportunities

1. National Plan to Address Alzheimer’s Disease: State/Local Implementation Opportunities Jane Tilly, DrPh HHS Office of the Assistant Secretary for Planning and Evaluation & ACL/Administration on Aging

2. Agenda • The Impact of Alzheimer’s Disease (AD) • National Plan to Address Alzheimer’s • ACL/AoA/AIDD Implementation Activities • State/Local Implementation • Open Discussion

3. Charting the Course from Healthy Aging to AD From: Alzheimer’s Disease: Unraveling the Mystery. NIH. Online. http://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-ad. accessed July 5 2012

4. Alzheimer’s Disease • As many as 5.1 million Americans may currently have the disease, and the prevalence of mild cognitive impairment is even higher. • The number of persons affected by Alzheimer’s disease or mild cognitive impairment is expected to increase considerably with the aging of the baby boomer generation.

5. Alzheimer’s Disease con’t • Accounts for 60-80% of all dementia cases • 6th leading cause of death in the United States and the 5th leading cause of death in Americans age 65 and older • 59% of National Family Caregiver Support Program participants care for someone with Alzheimer’s disease, dementia, or other memory-related illness

6. Risk • Age is the strongest known risk factor for Alzheimer’s disease; most people with the late-onset form of the disease receive the diagnosis after age 60 • Incidence, or the rate of occurrence of new cases, increases exponentially among people age 65 and 90, doubling approximately every 5 years • To date, numerous studies have attempted to describe the etiology and factors associated with the risk, generating an abundance of theories on potential risk factors and therapies

7. Cost • Estimates are that Alzheimer’s disease and other dementias cost more than $148 billion in the United States annually • These conditions also substantially affect people with the disease and caregivers in terms of financial costs, stress, and anguish

8. National Alzheimer’s Project Act of 2011 Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to establish the National Alzheimer’s Project to: • Create and maintain an integrated national plan to overcome Alzheimer’s • Coordinate research and services across all federal agencies • Accelerate the development of treatments that would prevent, halt, or reverse the disease • Improve early diagnosis and coordination of care and treatment of the disease • Improve outcomes for ethnic and racial minority populations at higher risk • Coordinate with international bodies to fight Alzheimer’s globally • Create an Advisory Council to review and comment on the National Plan and its implementation

9. NAPA Vision Statement For millions of Americans, the heartbreak of watching a loved one struggle with Alzheimer's disease is a pain they know all too well. Alzheimer's disease burdens an increasing number of our Nation's elders and their families, and it is essential that we confront the challenge it poses to our public health. -- President Barack Obama

10. President Obama’s $156 million Investment Investment designed to take immediate action on Alzheimer’s disease without waiting for Congress and support for the National Plan. • Increasing Alzheimer’s disease research funding. The National Institutes of Health (NIH) immediately dedicated an additional $50 million in FY 2012. • Sustaining and growing the Alzheimer’s disease research investment.President’s FY 2013 budget has $80 million in new Alzheimer’s disease research funding.

11. Investment (con’t) • Supporting people with Alzheimer’s disease and their families and educating the public and providers. $26 million in FYs 2012 & 2013 to support the goals of the National Plan: • Education and outreach to improve the public’s understanding of Alzheimer’s disease; $8.2 million in FY 2012 & 2013 • Outreach to enhance healthcare providers’ knowledge of the disease; $6 million in FY 2012 & 2013 • Expanded support for people with Alzheimer’s disease and caregivers in the community; $10.5 million in FY 2013 • Improved data collection and analysis to better understand the impact of Alzheimer’s disease on people with the disease, families and the health and long-term care systems. $1.3 million in FY 2013

12. Advisory Council (http://aspe.hhs.gov/daltcp/napa/#Council) • Chair -- Ronald Petersen, Ph.D., M.D., Mayo Clinic • 11 members representing: • Persons with Alzheimer’s disease • Caregivers • Providers • State government • Local government • Researchers • Department of Health and Human Services • Department of Defense • National Science Foundation • Department of Veterans Affairs Public Federal Government

13. Plan Development • Formation of Federal Interagency Workgroup & Advisory Council • Formation of Research, Clinical Care and LTSS subcommittees • Quarterly formal meetings of the Advisory Council and ad hoc meetings of workgroup and subcommittees • Final Plan May 15, 2012 • http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf

14. National Alzheimer’s Plan Goals • Prevent and Effectively Treat Alzheimer’s Disease by 2025 • Optimize Care Quality and Efficiency • Expand Supports for People with Alzheimer’s Disease and Their Families • Enhance Public Awareness and Engagement • Track Progress and Drive Improvement

15. Implementing the National Plan • Set Implementation Milestones Timeline • Identify lead agencies and partners • Implement many actions immediately • Report progress to Advisory Council • Update Plan annually

16. ACL’s Role • Federal Interagency Workgroup • Inventory and Opportunities for Improvement • NAPA Advisory Council • Plan Priorities • Actions • Implementation

17. ACL Alzheimer’s Capacity • Point of contact available to Aging & Disabilities networks • AoA’s Office of Supportive and Caregiver Services • Administration on Intellectual and Developmental Disabilities • Intergovernmental coordination • ACL-supported Resources • National Alzheimer’s Call Center: 1.800.272.3900 • Alzheimer’s website • http://www.alzheimers.gov • AoA Alzheimer resource webpage • http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx • Alzheimer’s Disease Supportive Services Program

18. ACL’s Dementia Capability Focus • Dementia capable services are tailored to the unique needs of persons with dementia and their caregivers • Dementia capable service systems: • Identify those with dementia • Provide services using staff with dementia training • Understand how best to communicate with persons with dementia and their family caregivers • Ensure that persons with dementia are supported in their decision-making about services and involve family caregivers when necessary

19. Why is Dementia Capability Necessary? • People with dementia and their caregivers have additional support needs • Creating a separate, dementia capable system is not possible or desirable • The general system needs to be capable of meeting the needs of those with dementia like it does the needs of others

20. ACL’s Recent Dementia Capability Investments • Dementia Capability Issue Brief and Toolkit • Issue Brief: www.adrc-tae.org/tiki-download_file.php?fileId=31471 • Toolkit: www.adrc-tae.org/tiki-download_file.php?fileId=31472 • Systems Integration Grants • GA, MN, NY, OH • ADSSP Systems Change Innovations

21. ACL Implementation Progress • Awareness/Outreach • Specific Populations • Aging Network Education • AoA/NIA Webinars • Legal Assistance • Evidence-based Interventions • Interagency Partnerships

22. Awareness / Outreach Goals • Conduct a national outreach initiative specifically for people caring for someone with Alzheimer’s disease – http://www.alzheimers.gov • Expand material on Alzheimer’s disease in existing long-term care awareness campaign- http://www.longtermcare.gov

23. Overview • Purpose: Connect caregivers with currently available public and private resources - key message: “you don’t have to go it alone” • Resources: • Budget: $4 million - additional $4.2 for FY’13 • Schedule: launched May 15 - 8 weeks development • Key Elements: • Consumer perspective in plain language • Acknowledge caregivers

26. Implement & Evaluate • Goal: • Allow consumer preference and behavior to dictate website design – what information do consumers really want/need ? • Method • Use marketing analytics to improve effectiveness of outreach including digital metrics and user surveys

27. Next Steps • Update/Improve Site • Committee of subject matter experts • Site updated on periodic basis - except Down Syndrome page • Expand into Social Media • Effort to use FaceBook and Twitter • Outreach to bloggers, FaceBook advertising etc. • Make better use of earned media • Expand earned media strategy • Connect with bloggers and interested journalists • Cooperate – Coordinate - Partner • Identify and work with existing networks/partners

28. Specific Populations • Taskforce to improve care for specific populations: • Racial and ethnic minorities • People with Down syndrome and other intellectual disabilities • Younger-onset Alzheimer’s disease • Federal Interagency Taskforce on Specific Populations with Alzheimer’s Disease

29. Aging Network Education • AoA/NIH Co-sponsored Webinar Series • Alzheimer’s and other dementias • On-line Tools & Resources to Assist Individuals with Dementia and Caregivers • Connecting the Aging Network, Individuals with Dementia, and Caregivers with Research Opportunities • Archived at: http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx#resources

30. Legal Assistance • Educate legal professionals about working with people with Alzheimer’s disease • Model Approaches- Phase II • Program Announcement for 2013 • Legal Issues and Alzheimer’s trainings • Webinars - Fall 2012 • Lawyers • Aging Network

31. Evidence-based Interventions • Review the state of the art of evidence-based interventions that can be delivered by community-based organizations

32. ACL NAPA Partnerships • CMS Partnership to Improve Dementia Care • National goal of reducing use of antipsychotic drugs by nursing home residents by 15% by the end of 2012 • NIH Research Investment Inventory • Inform and facilitate coordination among researchers, their organizations and funds • http://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadro

33. Aging & Disability Network Roles • Implementing the National Plan at the state and local levels

34. Goal 1: Prevent and Effectively Treat Alzheimer’s Disease by 2025 • Increase enrollment in clinical trials and other clinical research through community outreach • Racial and ethnic minorities • Educate the public about the latest research findings • Evidence-based practices • Non-pharmacological management of physical, cognitive, emotional, and behavioral symptoms

35. Goal 2: Enhance Care Quality and Efficiency • Build a workforce with the skills to provide quality care, which is dementia capable and culturally competent • Enhance dementia capability among staff • Develop dementia capable community health and long-term care Options Counseling in Aging and Disability Resource Centers • Link State Long-Term Care Ombudsmen programs to dementia specific training and resources

36. Goal 2: con’t • Ensure timely and accurate diagnosis • Link the public to diagnostic and clinical management services • Educate and support people with AD and their families upon diagnosis • Educate physicians and other health care providers about accessing long-term services and supports • Enhance assistance for people with AD and their caregivers to prepare for care needs

37. Goal 3: Expand Supports for People with AD and Their Families • Ensure receipt of culturally sensitive education, training, and support materials • Identify culturally sensitive materials and training • Distribute materials to caregivers • Help family caregivers to continue to provide care while maintaining their own health and well-being • Adopt best practices for caregiver assessment and referral • Adopt evidence-based interventions • Support caregivers in crisis/emergency situations

38. Goal 3: con’t • Assist families in planning for future care needs • Promote the Long-Term Care Awareness Campaign – http://www.longtermcare.gov • Maintain the dignity, safety and rights of people with AD • Promote educational opportunities for legal professionals • Support local implementation of the CMS National Partnership to Improve Dementia Care

39. Goal 4: Enhance Public Awareness and Engagement • Educate the Public about AD • Spread awareness of http://www.alzheimers.gov • Work with State, Tribal, and Local Governments to Improve Coordination and Identify Model Initiatives to Advance AD Awareness and Readiness across the Government • Convene leaders from state, tribal, and/or local governments • Identify best practices to the National Advisory Council

40. Goal 5: Improve Data to Track Progress • Update the National Plan annually • Provide input into the National Plan • Open comment periods are announced • Send comments to: napa@hhs.gov

41. National Plan Listserv • Monthly update email • To join, email LISTSERV@LIST.NIH.GOV • The only thing that needs to be in the body of the message is: subscribe NAPA-L your name • Your name being the name of the person joining • Whatever email address the message is sent from will be what is used in the Listserv

42. Additional Resources • ASPE National Alzheimer’s Project • Advisory Council Meeting summaries, slides and videos • Available at: http://aspe.hhs.gov/daltcp/napa/#Plan • New York Public Health Perspective • University at Albany School of Public Health: Public Health Live • Broadcast and handouts available at:http://www.albany.edu/sph/cphce/phl_0612.shtml

43. Questions? Not attending the live call? Email questions to: napa@hhs.gov

44. Presenters • Jane Tilly, DrPh HHS Office of the Assistant Secretary for Planning and Evaluation & ACL/Administration on Aging • Hunter McKay Administration for Community Living • Mette Pedersen, PhD ACL/Administration on Intellectual and Developmental Disabilities • Amy Wiatr-RodriguezACL/Administration on Aging • Omar ValverdeACL/Administration on Aging • Becky KurtzACL/Administration on Aging • Kate GordonContractor, ACL/Administration on Aging