National Alzheimer s project U.S.

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1 National Alzheimer s project U.S.

2 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 2

3 Investment designed to take immediate action on Alzheimer s disease without waiting for Congress and support for the National Plan. Increasing Alzheimer s disease research funding. The National Institutes of Health (NIH) immediately dedicated an additional $50 million in FY Sustaining and growing the Alzheimer s disease research investment. President s FY 2013 budget has $80 million in new Alzheimer s disease research funding. 3

4 Supporting people with Alzheimer s disease and their families and educating the public and providers. $26 million in FYs 2012 & 2013 to support the goals of the National Plan: Education and outreach to improve the public s understanding of Alzheimer s disease; $8.2 million in FY 2012 & 2013 Outreach to enhance healthcare providers knowledge of the disease; $6 million in FY 2012 & 2013 Expanded support for people with Alzheimer s disease and caregivers in the community; $10.5 million in FY 2013 Improved data collection and analysis to better understand the impact of Alzheimer s disease on people with the disease, families and the health and long-term care systems. $1.3 million in FY

5 Increase enrollment in clinical trials and other clinical research through community outreach Racial and ethnic minorities Educate the public about the latest research findings Evidence-based practices Non-pharmacological management of physical, cognitive, emotional, and behavioral symptoms 5

6 Build a workforce with the skills to provide quality care, which is dementia capable and culturally competent Enhance dementia capability among staff Develop dementia capable community health and long-term care Options Counseling in Aging and Disability Resource Centers Link State Long-Term Care Ombudsmen programs to dementia specific training and resources 6

7 Ensure timely and accurate diagnosis Link the public to diagnostic and clinical management services Educate and support people with AD and their families 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 7

8 Ensure receipt of culturally sensitive education, training, and support materials Identify culturally sensitive materials and training Distribute materials to caregivers Help family caregivers to continue to provide care while maintaining their own health and well-being Adopt best practices for caregiver assessment and referral Adopt evidence-based interventions Support caregivers in crisis/emergency situations 8

9 Assist families in planning for future care needs Promote the Long-Term Care Awareness Campaign Maintain the dignity, safety and rights of people with AD Promote educational opportunities for legal professionals Support local implementation of the CMS National Partnership to Improve Dementia Care 9

10 Educate the Public about AD Spread awareness of Work with State, Tribal, and Local Governments to Improve Coordination and Identify Model Initiatives to Advance AD Awareness and Readiness across the Government Convene leaders from state, tribal, and/or local governments Identify best practices to the National Advisory Council 10

11 Update the National Plan annually Provide input into the National Plan Open comment periods are announced Send comments to: 11

12 4 steps: (1) obtaining aegis for the formation of a national working group (2) drawing in volunteer-based membership from across the country and from various constituencies (3) infusing interest in providing pro-bono work and contributions in support of the working group s efforts (including the creating of a national plan) (4) drawing in key governmental and national organizational officials to support its efforts and implement its recommendations. 12

13 13

14 Practice Guidelines Curriculum development Advocacy and testimony Seeking to add a member to the national advisory group 14

15 Recommendations: L-4.1: DOH should work with The Office of People With Development Disabilities (OPWDD) to promote research on the connection between Down syndrome and AD in NYS research institutes. (New) L-4.2: DOH and partners should train professionals and paraprofessionals that work with individuals with developmental disabilities to be aware of the connection between Down syndrome and AD and to identify indicators of AD. (New) L-4.3: DOH and partners should encourage families and caregivers of individuals with Down syndrome who suspect memory problems to communicate this concern to the individual s health care provider. (New) L-4.4: Families of individuals with intellectual and developmental disabilities should be encouraged to engage in early planning regarding AD. 15

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