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Jane Tilly, DrPh
HHS Office of the Assistant Secretary for Planning andEvaluation
& ACL/Administration on Aging
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I. The Impact of Alzheimers Disease (AD)
II. National Plan to Address Alzheimers
III. ACL/AoA/AIDD Implementation Activities
IV. State/Local Implementation
V. Open Discussion
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Charting the Course from Healthy Aging to ADFrom: Alzheimers Disease: Unraveling the
Mystery. NIH. Online.http://www.nia.nih.gov/alzheimers/publication/part-2-
what-happens-brain-ad/changing-brain-ad.accesse
d July 5 2012
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As many as 5.1 million Americans maycurrently have the disease, and theprevalence of mild cognitive impairment iseven higher.
The number of persons affected byAlzheimers disease or mild cognitive
impairment is expected to increaseconsiderably with the aging of the babyboomer generation.
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Accounts for 60-80% of all dementia cases
6th leading cause of death in the UnitedStates and the 5th leading cause of death in
Americans age 65 and older
59% of National Family Caregiver SupportProgram participants care for someone with
Alzheimers disease, dementia, or othermemory-related illness
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Age is the strongest known risk factor forAlzheimers disease; most people with the late-onsetform 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 therisk, generating an abundance of theories onpotential risk factors and therapies
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Estimates are that Alzheimers disease andother dementias cost more than $148 billionin the United States annually
These conditions also substantially affectpeople with the disease and caregivers interms of financial costs, stress, and anguish
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Requires the Secretary of the U.S. Department of Health andHuman Services (HHS) to establish the National AlzheimersProject to:
Create and maintain an integrated national plan to overcome Alzheimers
Coordinate research and services across all federal agencies
Accelerate the development of treatments that would prevent, halt, or reversethe 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 Alzheimers globally
Create an Advisory Council to review and comment on the National Plan andits implementation
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For millions of Americans, the heartbreak ofwatching a loved one struggle withAlzheimer's disease is a pain they know alltoo well. Alzheimer's disease burdens an
increasing number of our Nation's elders andtheir families, and it is essential that weconfront the challenge it poses to our publichealth.
-- President Barack Obama
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Investment designed to take immediate action on
Alzheimers disease without waiting for Congress andsupport for the National Plan.
IncreasingAlzheimers disease research funding. TheNational Institutes of Health (NIH) immediatelydedicated an additional $50 million in FY 2012.
Sustainingand growing the Alzheimers diseaseresearch investment. Presidents FY 2013 budget has
$80 million in new Alzheimers disease researchfunding.
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Supporting people with Alzheimers disease and theirfamilies and educating the public and providers. $26million in FYs 2012 & 2013 to support the goals of theNational Plan:
Education and outreach to improve the publics understanding of
Alzheimers disease; $8.2 million in FY 2012 & 2013
Outreach to enhance healthcare providers knowledge of thedisease; $6 million in FY 2012 & 2013
Expanded support for people with Alzheimers disease andcaregivers in the community; $10.5 million in FY 2013
Improved data collection and analysis to better understand theimpact of Alzheimers disease on people with the disease, familiesand the health and long-term care systems. $1.3 million in FY2013
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Chair -- Ronald Petersen,Ph.D., M.D., Mayo Clinic
11 members representing:
Persons with Alzheimersdisease Caregivers Providers State government Local government Researchers
Department of Healthand Human Services
Department of Defense
National ScienceFoundation
Department ofVeterans Affairs
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Formation of Federal Interagency Workgroup &Advisory Council
Formation of Research, Clinical Care and LTSSsubcommittees
Quarterly formal meetings of the AdvisoryCouncil and ad hoc meetings of workgroup andsubcommittees
Final Plan May 15, 2012 http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf
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1. Prevent and Effectively Treat AlzheimersDisease by 2025
2. Optimize Care Quality and Efficiency
3. Expand Supports for People with AlzheimersDisease and Their Families
4. Enhance Public Awareness and Engagement
5. Track Progress and Drive Improvement
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Set Implementation Milestones Timeline
Identify lead agencies and partners
Implement many actions immediately
Report progress to Advisory Council
Update Plan annually
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Federal Interagency Workgroup
Inventory and Opportunities for Improvement
NAPA Advisory Council
Plan Priorities
Actions
Implementation
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Point of contact available to Aging & Disabilitiesnetworks AoAs Office of Supportive and Caregiver Services Administration on Intellectual and Developmental
Disabilities Intergovernmental coordination
ACL-supported Resources National Alzheimers Call Center: 1.800.272.3900 Alzheimers website
http://www.alzheimers.gov AoA Alzheimer resource webpage
http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx
Alzheimers Disease Supportive Services Program
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Dementia capable services are tailored to theunique needs of persons with dementia andtheir 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 intheir decision-making about services and involvefamily caregivers when necessary
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People with dementia and their caregivershave additional support needs
Creating a separate, dementia capablesystem is not possible or desirable
The general system needs to be capable of
meeting the needs of those with dementialike it does the needs of others
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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
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Awareness/Outreach
Specific Populations
Aging Network Education AoA/NIA Webinars Legal Assistance
Evidence-based Interventions
Interagency Partnerships
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1. Conduct a national outreach initiative
specifically for people caring for someonewith Alzheimers disease
2. Expand material on Alzheimers disease in
existing long-term care awarenesscampaign-
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Purpose: Connect caregivers with currentlyavailable public and private resources - keymessage:
Resources: Budget: $4 million - additional $4.2 for FY13
Schedule: launched May 15 - 8 weeks development
Key Elements:1. Consumer perspective in plain language
2. Acknowledge caregivers
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Goal: Allow consumer preference and behavior to dictate
website design
Method Use marketing analytics to improve effectiveness of
outreach including digital metrics and user surveys
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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
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Taskforce to improve care for specificpopulations: Racial and ethnic minorities
People with Down syndrome and other intellectual
disabilities Younger-onset Alzheimers disease
Federal Interagency Taskforce on Specific
Populations with Alzheimers Disease
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AoA/NIH Co-sponsored Webinar Series Alzheimers and other dementias
On-line Tools & Resources to Assist Individuals withDementia and Caregivers
Connecting the Aging Network, Individuals withDementia, and Caregivers with ResearchOpportunities
Archived at:http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx#resources
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Educate legal professionals about workingwith people with Alzheimers disease
Model Approaches- Phase II Program Announcement for 2013
Legal Issues and Alzheimers trainings Webinars - Fall 2012
Lawyers
Aging Network
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Review the state of the art of evidence-basedinterventions that can be delivered bycommunity-based organizations
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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
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Implementing the National Plan at the stateand local levels
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Increase enrollment in clinical trials and otherclinical research through community outreach Racial and ethnic minorities
Educate the public about the latest researchfindings Evidence-based practices
Non-pharmacological management of physical,cognitive, emotional, and behavioral symptoms
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Build a workforce with the skills to providequality care, which is dementia capableand culturally competent
Enhance dementia capability among staff
Develop dementia capable community health andlong-term care Options Counseling in Aging andDisability Resource Centers
Link State Long-Term Care Ombudsmen programs todementia specific training and resources
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Ensure timely and accurate diagnosis Link the public to diagnostic and clinical
management services
Educate and support people with AD and theirfamilies 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
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Ensure receipt of culturally sensitiveeducation, training, and support materials Identify culturally sensitive materials and training
Distribute materials to caregivers
Help family caregivers to continue to providecare while maintaining their own health andwell-being
Adopt best practices for caregiver assessmentand referral
Adopt evidence-based interventions
Support caregivers in crisis/emergency situations
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Assist families in planning for future careneeds Promote the Long-Term Care Awareness
Campaign http://www.longtermcare.gov
Maintain the dignity, safety and rights ofpeople with AD Promote educational opportunities for legal
professionals Support local implementation of the CMS National
Partnership to Improve Dementia Care
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Educate the Public about AD Spread awareness ofhttp://www.alzheimers.gov
Work with State, Tribal, and Local
Governments to Improve Coordination andIdentify Model Initiatives to Advance ADAwareness and Readiness across theGovernment Convene leaders from state, tribal, and/or local
governments Identify best practices to the National Advisory
Council
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Update the National Plan annually Provide input into the National Plan
Open comment periods are announced
Send comments to: [email protected]
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Monthly update email
To join, email [email protected] The only thing that needs to be in the body of the
message is: subscribe NAPA-L Your name being the name of the person joining
Whatever email address the message is sent fromwill be what is used in the Listserv
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ASPE National Alzheimers 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
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Not attending the live call? Email questions
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Jane Tilly, DrPhHHS Office of the Assistant Secretary for Planning and Evaluation &ACL/Administration on Aging
Hunter McKayAdministration for Community Living
Mette Pedersen, PhDACL/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