final national plan presentation aug 212012

7/29/2019 Final National Plan Presentation Aug 212012

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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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http://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-adhttp://www.nia.nih.gov/alzheimers/publication/part-2-what-happens-brain-ad/changing-brain-ad


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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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http://aspe.hhs.gov/daltcp/napa/http://aspe.hhs.gov/daltcp/napa/


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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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http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdfhttp://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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http://www.alzheimers.gov/http://www.alzheimers.gov/http://www.alzheimers.gov/http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.asphttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.asphttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.asphttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.asphttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.asphttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.asphttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.asphttp://www.alzheimers.gov/http://www.alzheimers.gov/


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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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http://www.adrc-tae.org/tiki-download_file.php?fileId=31471http://www.adrc-tae.org/tiki-download_file.php?fileId=31471http://www.adrc-tae.org/tiki-download_file.php?fileId=31472http://www.adrc-tae.org/tiki-download_file.php?fileId=31472http://www.adrc-tae.org/tiki-download_file.php?fileId=31472http://www.adrc-tae.org/tiki-download_file.php?fileId=31472http://www.adrc-tae.org/tiki-download_file.php?fileId=31472http://www.adrc-tae.org/tiki-download_file.php?fileId=31472http://www.adrc-tae.org/tiki-download_file.php?fileId=31472http://www.adrc-tae.org/tiki-download_file.php?fileId=31471http://www.adrc-tae.org/tiki-download_file.php?fileId=31471http://www.adrc-tae.org/tiki-download_file.php?fileId=31471http://www.adrc-tae.org/tiki-download_file.php?fileId=31471http://www.adrc-tae.org/tiki-download_file.php?fileId=31471


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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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http://www.longtermcare.gov/http://www.alzheimers.gov/


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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
http://www.alzheimers.gov/


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http://www.alzheimers.gov/


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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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http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspxhttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspxhttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspxhttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspxhttp://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx


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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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http://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadrohttp://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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http://www.longtermcare.gov/http://www.longtermcare.gov/


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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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http://www.alzheimers.gov/http://www.alzheimers.gov/


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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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mailto:%[email protected]:%[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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http://aspe.hhs.gov/daltcp/napa/http://www.albany.edu/sph/cphce/phl_0612.shtmlhttp://www.albany.edu/sph/cphce/phl_0612.shtmlhttp://aspe.hhs.gov/daltcp/napa/


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Not attending the live call? Email questions

to: [email protected]

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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

final national plan presentation aug 212012

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