Long-Term Services and Supports and the National Plan To Address Alzheimer’s Disease October 30th, 2014 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/

Overview Alzheimer’s Disease and Related Dementias in the US The National Alzheimer’s Project Act (NAPA) National Plan Progress NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/

Alzheimer’s Disease/Related Dementias in the U.S. 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/

Major Challenges Presented by Alzheimer’s Disease 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/

Investments and Resources in AD/RD Before the NAPA: Highlights $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 Small programs include the National Family Caregiver Support Program funded by AoA, which provides services such as respite to caregivers of older adults with disabilities, including people with Alzheimer’s disease Another AoA program is the Alzheimer’s Disease Supportive Services Program, which is only $3 million. This program helps states and communities make infrastructure changes so that the existing LTSS system can be more responsive to the needs of people with AD AoA also funds a 24/7 call line that caregivers can use to get information and for help in emergencies NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/

Key Features of the National Alzheimer’s Project Act (NAPA) 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 NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/

Change in US Federal Research Funding for Alzheimer’s Millions ($) NAPA passed NAPA signed Alzheimer’s Association

Advisory Council Members (Website: http://aspe. hhs Department of Health and Human Services ASPE, ACL, CMS, HRSA, SAMHSA, FDA, CDC Department of Defense National Science Foundation Department of Veterans Affairs 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 Public Federal Government

National Plan 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 A few more details about the National Plan. (Read/Summarize bullets) NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/

Goals Prevent and Effectively Treat Alzheimer’s Disease by 2025 Optimize Care Quality and Efficiency Expand Supports for People with Alzheimer’s Disease and Their Families Enhance Public Awareness and Engagement Track Progress and Drive Improvement Goal 1 includes strategies to identify and expand research on Alzheimer’s disease Goal 2 includes strategies related mostly to clinical care: to build a workforce to provide high-quality care; ensure timely and accurate diagnoses; educate dementia patients and families about their diagnosis; explore new models for care; ensure safe care transitions; advance coordinated and integrated health and long-term care; improve care for populations that are disproportionately affected by the disease Goal 3 includes strategies related long-term care and caregiving: Ensure Receipt of Culturally Sensitive Education, Training, and Support Materials; Enable Family Caregivers to Continue to Provide Care while Maintaining Their Own Health and Well-Being; Assist Families in Planning for Future Care Needs; Maintain the Dignity, Safety and Rights of People with Alzheimer’s Disease; Assess and Address the Housing Needs of People with AD Goal 4 includes strategies to: Educate the Public about Alzheimer’s Disease; Work with State, Tribal, and Local Governments to Improve Coordination; Coordinate U.S. Efforts with Those of the Global Community Goal 5 includes strategies to: Enhance the Federal Government’s Ability to Track Progress; Monitor Progress on the National Plan NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/

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

Implementation Continued 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/

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 A few details on what we have accomplished since the 2012 release: National Institutes of Health brought together international experts for the Alzheimer’s Disease Research Summit 2012: Path to Treatment and Prevention, which developed recommendations on how best to advance research. The Health Resources and Services Administration issued grants that helped provide training to more than 10,000 health care providers on topics from dementia diagnosis to effective behavior management for people with dementia and their caregivers. HHS launched www.alzheimers.gov to increase public awareness and connect people with a diagnosis and their caregivers with important resources. The site had more than 200,000 visits in the first ten months. HHS convened a Specific Populations Task Force that worked with outside groups to identify the unique challenges faced by groups unequally burdened by Alzheimer’s disease. This includes people with younger onset AD, racial and ethnic minority groups, and people with Down Syndrome. The report was released in July 2013 and will inform the 2014 Update. NIH held a meeting on research about AD for people with Down syndrome in April 2013 NIH research summit on other dementias in May 2013 NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/

Themed Advisory Council Meetings 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: http://aspe.hhs.gov/daltcp/napa/

Resources: Additional Information 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/

Rohini.Khillan@HHS.gov (202) 690-5932 Thank you! Questions? Rohini.Khillan@HHS.gov (202) 690-5932 NAPA WEBSITE: http://aspe.hhs.gov/daltcp/napa/

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