rohini khillan office of disability, aging, and long-term care policy hhs office of the assistant...
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Long-Term Services and Supports and the National Plan To Address Alzheimer’s Disease
October 30th, 2014
Rohini KhillanOffice of Disability, Aging, and Long-Term Care Policy
HHS Office of the Assistant Secretary for Planning and EvaluationNAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
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Alzheimer’s Disease and Related Dementias in the US
The National Alzheimer’s Project Act (NAPA)
National Plan
Progress
Overview
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.
Alzheimer’s Disease/Related Dementias in the U.S.
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.
Major Challenges Presented by Alzheimer’s Disease
NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
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$502 million on research in 2010◦ Physiology; diagnosis; translational research & clinical
interventions; epidemiology; care, support & health economics; research resources
◦ Vast majority ($457 million) funded by the National Institutes of Health (NIH)
Clinical care◦ Detection and diagnosis; ◦ Treatment and care coordination◦ Training
Long-Term Care◦ Nursing home entitlement for people who meet need criteria◦ Smaller programs to support national network of aging
services providers
Investments and Resources in AD/RD Before the NAPA: Highlights
NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
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Signed January 4, 2011, requires the Secretary of the U.S. Department of Health and Human Services (HHS) to establish the National Alzheimer’s Project to:
Create and maintain an integrated national plan to overcome Alzheimer’s
Coordinate research and services across all federal agencies
Accelerate the development of treatments that would prevent, halt, or reverse the disease
Improve early diagnosis and coordination of care and treatment of the disease
Improve outcomes for ethnic and racial minority populations at higher risk
Coordinate with international bodies to fight Alzheimer’s globally.
Create an Advisory Council to review and comment on the national plan and its implementation
Key Features of the National Alzheimer’s Project Act (NAPA)
Change in US Federal Research Funding for Alzheimer’s
FY10 FY11 FY12 FY13 FY14400
450
500
550
600
Mill
ion
s ($
)
NAPA passed
NAPA signed
Alzheimer’s Association
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Advisory Council Members(Website: http://aspe.hhs.gov/daltcp/napa/#Council )
Public Federal Government
Chair -- Ronald Petersen, Ph.D., M.D., Mayo Clinic
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
Department of Health and Human Services◦ ASPE, ACL, CMS, HRSA,
SAMHSA, FDA, CDC
Department of Defense
National Science Foundation
Department of Veterans Affairs
NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
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Released by HHS Secretary Sebelius on May 15, 2012 during International Research Summit at NIH
Balance work on treatments with care needed by people with the disease and their families now
National Plan, not just a federal plan: Requires engagement of public and private sector stakeholders
Long-term goals, strategies to achieve those goals, and immediate actions
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
National Plan
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
Goals
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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Implementing the National Plan
NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
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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.
Implementation Continued
NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
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Progress to Date Developed recommendations on how best to advance research:
Alzheimer’s Disease Research Summit 2012: Path to Treatment and Prevention
Created a document with research milestones to reach 2025 goal: http://aspe.hhs.gov/daltcp/napa/milestones/milestones.shtml
Provided resources to train >10,000 health care providers on topics from dementia diagnosis to effective behavior management
Launched www.alzheimers.gov to increase public awareness and connect people with a diagnosis and their caregivers with important resources
Panel on advanced dementia
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)
NIH research summit on other dementias (May 2013)
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 LTC 101 Medicaid HCBS and Waivers Residential Care and Nursing Homes Innovative Care Practices for Advanced Dementia
Themed Advisory Council Meetings
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/Index.aspx
ADSSP program: http://www.aoa.gov/AoA_Programs/HPW/Alz_Grants/
National Family Caregiver Support Program: http://www.aoa.gov/AoA_programs/HCLTC/Caregiver/index.aspx
Resources: Additional Information
NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/
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Thank you!Questions?
[email protected](202) 690-5932
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 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
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National Plan Listserv