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Rohini Khillan Office of Disability, Aging, and Long-Term Care Policy HHS Office of the Assistant Secretary for Planning and Evaluation NAPA WEBSITE:

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Presentation on theme: "Rohini Khillan Office of Disability, Aging, and Long-Term Care Policy HHS Office of the Assistant Secretary for Planning and Evaluation NAPA WEBSITE:"— Presentation transcript:

1 Rohini Khillan Office of Disability, Aging, and Long-Term Care Policy HHS Office of the Assistant Secretary for Planning and Evaluation NAPA WEBSITE: 1

2  Alzheimer’s Disease and Related Dementias in the US  The National Alzheimer’s Project Act (NAPA)  National Plan  Progress NAPA WEBSITE:

3  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: NAPA WEBSITE:

4  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:

5  $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 NAPA WEBSITE:

6 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 6 NAPA WEBSITE:

7 Millions ($) NAPA passed NAPA signed Alzheimer’s Association

8 PublicFederal 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 8

9  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: ◦ 2013 Update released June 2013 ◦ 2014 Update released April NAPA WEBSITE:

10 1. Prevent and Effectively Treat Alzheimer’s Disease by 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:

11  Set Implementation Milestones Timeline  Identify lead agencies and partners  Implement many actions immediately  Report progress to Advisory Council  Update Plan annually 11

12  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. 12 NAPA WEBSITE:

13  Developed recommendations on how best to advance research: Alzheimer’s Disease Research Summit 2012: Path to Treatment and PreventionAlzheimer’s Disease Research Summit 2012: Path to Treatment and Prevention  Created a document with research milestones to reach 2025 goal:  Provided resources to train >10,000 health care providers on topics from dementia diagnosis to effective behavior management  Launched to increase public awareness and connect people with a diagnosis and their caregivers with important resourceswww.alzheimers.gov  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 13 NAPA WEBSITE:

14 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 NAPA WEBSITE:

15  NAPA website:   National Institute on Aging:  Eldercare Locator: ndex.aspx ndex.aspx  ADSSP program: ants/ ants/  National Family Caregiver Support Program: giver/index.aspx giver/index.aspx NAPA WEBSITE:

16 (202) NAPA WEBSITE:

17  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 17


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