Rohini Khillan
Office of Disability, Aging, and Long-Term Care Policy
HHS Office of the Assistant Secretary for Planning and Evaluation
NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
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Alzheimer’s Disease and Related Dementias
in the US
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The National Alzheimer’s Project Act (NAPA)

National Plan

Progress
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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Estimated 5 million people in the U.S. with AD/RD
◦ The number of people in the U.S. over age 85 is growing;
thus, experts expect a substantial increase in the number
of people with AD/RD.
Estimated annual costs to health and long-term
care systems for caring for people with AD/RD:
$109 billion, most of which is LTC
Estimated costs of care by family and friends
◦ Foregone wages: $50 billion
◦ Paying for this care in the private market would cost over
$106 billion
Source: Hurd et al. N Engl J Med 2013;368:1326-34.
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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Currently there is no way to prevent, treat or
cure AD/RD.
Better quality of care measures and staff
training are needed.
Family members and other caregivers need
support.
Stigmas and misconceptions are widespread.
Public and private progress should be
coordinated and tracked.
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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$502 million on research in 2010

Clinical care

Long-Term Care
◦ Physiology; diagnosis; translational research & clinical
interventions; epidemiology; care, support & health
economics; research resources
◦ Vast majority ($457 million) funded by the National
Institutes of Health (NIH)
◦ Detection and diagnosis;
◦ Treatment and care coordination
◦ Training
◦ Nursing home entitlement for people who meet need
criteria
◦ Smaller programs to support national network of aging
services providers
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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Signed January 4, 2011, requires the Secretary of the U.S. Department of Health
and Human Services (HHS) to establish the National Alzheimer’s Project to:
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Create and maintain an integrated national plan to overcome Alzheimer’s
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Coordinate research and services across all federal agencies
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Accelerate the development of treatments that would prevent, halt, or reverse
the disease
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Improve early diagnosis and coordination of care and treatment of the disease
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Improve outcomes for ethnic and racial minority populations at higher risk
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Coordinate with international bodies to fight Alzheimer’s globally.
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Create an Advisory Council to review and comment on the national plan and its
implementation
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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600
Millions ($)
550
500
NAPA
passed
450
NAPA signed
400
FY10
FY11
FY12
FY13
Alzheimer’s Association
FY14
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Chair -- Ronald Petersen,
Ph.D., M.D., Mayo Clinic

◦ ASPE, ACL, CMS, HRSA,
SAMHSA, FDA, CDC
13 members representing:
◦ Person with Alzheimer’s
disease
◦ 2 Caregivers
◦ 2 Providers
◦ 2 State government
◦ 2 Local government
◦ 2 Researchers
◦ 2 Voluntary health
association representatives
Public
Department of Health
and Human Services

Department of Defense
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National Science
Foundation
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Department of Veterans
Affairs
Federal Government
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Released by HHS Secretary Sebelius on May 15, 2012 during International Research
Summit at NIH
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Balance work on treatments with care needed by people with the disease and their
families now
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National Plan, not just a federal plan: Requires engagement of public and private sector
stakeholders
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Long-term goals, strategies to achieve those goals, and immediate actions
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Transparent reporting on progress:
◦ Implementation timeline is appendix
◦ Bi-annual reporting on progress to Advisory Council
Plan Iterations
◦ Final Plan released May 2012: http://aspe.hhs.gov/daltcp/napa/NatlPlan.shtml
◦ 2013 Update released June 2013
◦ 2014 Update released April 2014
http://aspe.hhs.gov/daltcp/napa/NatlPlan2014.shtml
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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1.
Prevent and Effectively Treat
Alzheimer’s Disease by 2025
2.
Optimize Care Quality and
Efficiency
3.
Expand Supports for People
with Alzheimer’s Disease
and Their Families
4.
Enhance Public Awareness
and Engagement
5.
Track Progress and Drive
Improvement
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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Set Implementation Milestones Timeline
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Identify lead agencies and partners
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Implement many actions immediately
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Report progress to Advisory Council
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Update Plan annually
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Formation of Federal Interagency Workgroup & Advisory
Council
Formation of Research, Clinical Care and LTSS
subcommittees of both, and recently created a
subcommittee on Ethics
Quarterly formal meetings of the Advisory Council and ad
hoc meetings of workgroup and subcommittees
Work to date addresses current programs serving those
with Alzheimer’s and their caregivers, possible
improvements to programs, and new initiatives.
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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Developed recommendations on how best to advance research: Alzheimer’s Disease
Research Summit 2012: Path to Treatment and Prevention
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Created a document with research milestones to reach 2025 goal:
http://aspe.hhs.gov/daltcp/napa/milestones/milestones.shtml
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Provided resources to train >10,000 health care providers on topics from dementia
diagnosis to effective behavior management
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Launched www.alzheimers.gov to increase public awareness and connect people with
a diagnosis and their caregivers with important resources
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Panel on advanced dementia
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Specific Populations Task Force to identify the unique challenges faced by
groups unequally burdened by Alzheimer’s disease. Report released July 24

NIH meeting on AD for people with Down syndrome (April 2013)
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NIH research summit on other dementias (May 2013)
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International work with the G7 and WHO
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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Starting in April 2014, Advisory Council meetings
have had a theme
◦ April 2014: State and Local Plans to address ADRD
 State plans: New York, Minnesota
 Local plan: San Francisco
◦ July 2014: Informal Caregiving
 ACL Programs to help caregivers
 National Study on Caregiving, supplement to NHATS
 Panel on caregiving experiences
◦ October 2014: Long-term Care
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LTC 101
Medicaid HCBS and Waivers
Residential Care and Nursing Homes
Innovative Care Practices for Advanced Dementia
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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NAPA website: http://aspe.hhs.gov/daltcp/napa/
http://www.alzheimers.gov
National Institute on Aging:
http://www.nia.nih.gov/alzheimers
Eldercare Locator:
http://www.eldercare.gov/eldercare.net/public/I
ndex.aspx
ADSSP program:
http://www.aoa.gov/AoA_Programs/HPW/Alz_Gr
ants/
National Family Caregiver Support Program:
http://www.aoa.gov/AoA_programs/HCLTC/Care
giver/index.aspx
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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Rohini.Khillan@HHS.gov
(202) 690-5932
NAPA WEBSITE:
http://aspe.hhs.gov/daltcp/napa/
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