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. rt-2-what-happens-brain-ad/changing-brain-ad. accessed July

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.
Estimates vary for Alzheimer’s prevalence (between 2.4 to 5.1 million people in the United States). The higher prevalence figure of 5.1 million primarily includes people with mild Alzheimer’s disease who still function fairly normally. This figure would prove useful, for example, in determining the size of the market for an effective therapy that targets the early stages of the disease. The lower figure of 2.4 million includes people who have moderate to severe Alzheimer’s disease and who depend on others for help with daily living.

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

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:
Alzheimer’s website
AoA Alzheimer resource webpage
ts/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: download_file.php?fileId=31471
Toolkit: 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 –
Expand material on Alzheimer’s disease in existing long-term care awareness campaign-
NAPA Goal: 3.C.2 – Expand long-term care awareness efforts
NAPA Goal: 4.A.1 – Design and conduct a national education and outreach initiative

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 weeks development
Key Elements:
Consumer perspective in plain language
Acknowledge caregivers

26. Implement & Evaluate Goal: Method
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 Expand into Social Media
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
NAPA Action: 2.H.1: Create a taskforce to improve care for these specific populations NAPA Action: 2.H.2: Identify steps to ensure access to long-term services and supports for younger people with AD

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: Alz_Grants/index.aspx#resources
NAPA Action: 2.A.5 - Strengthen the state aging and public health workforce
NAPA Action: 1.B.3 - Increase enrollment in clinical trials and other clinical research through community, national, and international outreach

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
NAPA Action 3.D.1: Educate legal professionals about working with people with Alzheimer’s disease

31. Evidence-based Interventions
Review the state of the art of evidence-based interventions that can be delivered by community-based organizations
NAPA Action: 1.E.2: Leverage public and private collaborations to facilitate dissemination, translation, and implementation of research findings
NAPA Action: 3.B.3: 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
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 –
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
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:

41. National Plan Listserv
Monthly update
To join,
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 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:
New York Public Health Perspective
University at Albany School of Public Health: Public Health Live
Broadcast and handouts available at:

43. 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-Rodriguez ACL/Administration on Aging
Omar Valverde ACL/Administration on Aging
Becky Kurtz ACL/Administration on Aging
Kate Gordon Contractor, ACL/Administration on Aging