National Alzheimer's Project Act

National Alzheimer's Project Act

NOW AVAILABLE
National Plan to Address Alzheimer's Disease: 2015 Update
national-plan-address-alzheimer%E2%80%99s-disease-2015-update-0

Table of Contents

Alzheimer's Disease and Related Dementias
National Alzheimer’s Project Act
Advisory Council on Alzheimer’s Research, Care, and Services
Advisory Council Meetings
National Plan to Address Alzheimer's Disease
Advisory Council Recommendations
NAPA Research Milestones
Other Material Available on Alzheimer's Disease and Related Dementias
NAPA Public Comments
Meetings Outside Advisory Council
Agency Reports/Websites
Acronyms
Preliminary Information

 

Comments and questions should be sent to napa@hhs.gov.

WOULD YOU LIKE TO BE ALERTED WHEN NEW INFORMATION IS AVAILABLE? A Listserv is also available that will automatically email you a monthly message. To join, send an email to LISTSERV@LIST.NIH.GOV. Whatever email address the message is sent from will be what is used in the Listserv. The only thing that needs to be in the body of the message is:

subscribe NAPA-L your name
(your name, of course, being the name of the person joining)

 

DO YOU TWEET? NAPA staff will now be making use of the HHS/ASPE twitter account to spread the work of the Advisory Council to a wider audience. Our first tweet announced our January 26th meeting, and we will continue to use it to post about what comes out of this and future meetings, the Advisory Council's recommendations, updates to the National Plan, and other relevant material around dementia and Alzheimer's. We would encourage those of you who can to please retweet our messages and get #NAPACouncil trending! The more we can elevate and educate others on our work the better.

ASPE twitter account: https://twitter.com/HHS_ASPE/status/555805642821492739.

 

Alzheimer's Disease and Related Dementias

Alzheimer's disease and related dementias (ADRD) are debilitating conditions that impair memory, thought processes, and functioning, primarily among older adults. The effects of these diseases can be devastating, both for individuals afflicted with ADRD and for their families. People with ADRD may require significant amounts of health care and intensive long-term services and supports -- including, but not limited to, management of chronic conditions, help taking medications, round-the-clock supervision and care, or assistance with personal care activities, such as eating, bathing, and dressing. In the United States, ADRD affects as many as 5 million people and nearly 40% of the population aged 85 and older. Roughly 13.2 million older Americans are projected to have ADRD by 2050.

The U.S. Department of Health and Human Services (HHS) is working to identify how to prevent ADRD and to address the challenges faced by people with these conditions and their caregivers. The National Institute on Aging leads the National Institutes of Health's efforts in clinical, behavioral and social research into Alzheimer's disease, aimed at finding ways to treat and ultimately prevent the disorder. The Centers for Disease Control and Prevention is working to implement the Healthy Brain Initiative, including assisting with monitoring the public health burden of cognitive impairment and enhancing understanding about how diverse groups perceive cognitive health. The Administration on Aging Alzheimer's Disease Supportive Services Program is helping to create responsive, integrated, and sustainable service delivery systems for people with dementias and their caregivers.

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National Alzheimer's Project Act

The National Alzheimer's Project Act (NAPA) creates an important opportunity to build upon and leverage HHS programs and other federal efforts to help change the trajectory of ADRD. The law calls for a National Plan for ADRD with input from a public-private Advisory Council on Alzheimer's Research, Care and Services. The Advisory Council makes recommendations to HHS for priority actions to expand, coordinate, and condense programs in order to improve the health outcomes of people with ADRD and reduce the financial burden of these conditions on those with the diseases, their families, and society.

In order to inform the National Plan for ADRD, HHS has partnered with the U.S. Department of Veterans Affairs (VA), the National Science Foundation (NSF), and the U.S. Department of Defense (DoD) to convene an Interagency Group on Alzheimer's Disease and Related Dementias. The group includes HHS representatives from the Office of the Assistant Secretary for Planning and Evaluation (ASPE), Office of the Assistant Secretary for Health (OASH), National Institute on Aging (NIA), Centers for Medicare and Medicaid Services (CMS), Centers for Disease Control and Prevention (CDC), Administration on Aging (AoA), Health Resources and Services Administration (HRSA), Agency for Healthcare Research and Quality (AHRQ), Substance Abuse and Mental Health Services Administration (SAMHSA), Food and Drug Administration (FDA), Indian Health Service (IHS), and Administration for Children and Families (ACF). The Interagency Group is working to carry out NAPA's charges to coordinate research and services across agencies, accelerate the development of ADRD treatments, improve early diagnosis and coordination of care, reduce ethnic and racial disparities in rates of ADRD, and coordinate with international efforts to fight these conditions. The Plan this group developed was presented to the Advisory Council for review, and updated annually.

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Advisory Council on Alzheimer’s Research, Care, and Services

The Advisory Council consists of at least 22 members and meets quarterly to discuss the efficacy of government programs targeting the needs of individuals and caregivers coping with the consequences of ADRD. The Advisory Council provided comments on the first National Plan for ADRD which was developed by HHS. The Advisory Council reviewed and commented on the draft National Plan, and made recommendations for priority actions. On an annual basis, the Advisory Council evaluates the implementation of the recommendations through an updated National Plan.

Members from outside of the Federal Government include two patient advocates, two caregivers, two health care providers, two representatives of state health departments, two researchers, and two voluntary health association representatives.

A current list of Advisory Council members is available at advisory-council-alzheimers-research-care-and-services-members.

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Advisory Council Meeting

    July 27, 2015 Advisory Council Meeting

NOW AVAILABLE

JULY 2015 ADVISORY COUNCIL MEETING VIDEOS
JULY 2015 ADVISORY COUNCIL MEETING PRESENTATION SLIDES
JULY 2015 ADVISORY COUNCIL MEETING AGENDA 
JULY 2015 ADVISORY COUNCIL MEETING ANNOUNCEMENT

The meeting was held on Monday, July 27, 2015 in Washington, D.C. The Advisory Council heard from experts on related dementias, such as Frontotemporal dementia, Lewy Body dementia, and others. Following that session, the Advisory Council held a discussion of the expected bypass budget from NIA, required in the CRomnibus Bill. The Advisory Council also discussed updates to international events on dementia.

Meeting Information Available

Material from the latest Advisory Council meeting, as well as the discussion description and material from past meetings, are listed at advisory-council-alzheimers-research-care-and-services-meetings.

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National Plan to Address Alzheimer's Disease

The National Plan, originated in 2012, establishes five ambitious goals to both prevent future cases of Alzheimer's disease and to better meet the needs of the millions of American families currently facing this disease.

  • 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.

The National Plan will be updated the Spring of each year. A direct link to the current National Plan is available below, and past Plans are listed at national-plans-address-alzheimers-disease#National Plans.

National Plan to Address Alzheimer's Disease: 2015 Update [Available July 13, 2015]
Full HTML Version   national-plan-address-alzheimer%E2%80%99s-disease-2015-update-0
Full PDF Version   national-plan-address-alzheimer’s-disease-2015-update (58 PDF pages)
2015 PRESS RELEASE: White House Conference on Aging: Combating Alzheimer's and Other Dementias [Available July 14, 2015]
Full HTML Version   white-house-conference-aging-combating-alzheimers-and-other-dementias-0
Full PDF Version   white-house-conference-aging-combating-alzheimers-and-other-dementias (2 PDF pages)
2015 WHITE HOUSE FACT SHEET: The White House Conference on Aging [Available July 14, 2015]
Full HTML Version   fact-sheet-white-house-conference-aging-0
Full PDF Version   /pdf-document/fact-sheet-white-house-conference-aging (9 PDF pages)

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Advisory Council Recommendations

Recommendations are adopted yearly by the non-federal members of the Advisory Council the beginning of each year. A direct link to the current recommendations is available below, and past recommendations are listed at national-plans-address-alzheimers-disease#Advisory Council Recommendations

    2015 Recommendations of the Public Members of the Advisory Council on Alzheimer's Research, Care, and Services [Available March 10, 2015]
        Full HTML Version   public-members-advisory-council-alzheimers-research-care-and-services-2015
        Full PDF Version   PUBLIC MEMBERS OF THE ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE AND SERVICES: 2015 Recommendations (6 PDF pages)

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NAPA Research Milestones

The National Plan requires HHS to track the implementation to determine whether actions are completed in a timely and successful manner. This document provides a timeline, method of action, and identifies lead and partner agencies for each action step in the plan. Progress on each of these actions will be reported biannually to the Advisory Council.

NAPA Research Milestones for Goal #1 -- To Treat or Prevent Alzheimer's Disease by 2025
          File Index   napa-research-milestones-goal-1-treat-or-prevent-alzheimers-disease-2025 [Last Updated September 26, 2013]

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Other Material Available on Alzheimer's Disease and Related Disease

Please alert us at napa@hhs.gov if you discover broken links

NAPA Public Comments

The Public Comments index lists all comments available online by keyword. You can also browse the comments by the year received.

PLEASE NOTE: Information included on this list is not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.

Comment Index [Last Updated July 2015]
Full HTML Index   public-comment-index
2015 Comments [Last Updated July 2015]
Full HTML Version   2015-public-comments-national-plan-alzheimers-disease-and-national-alzheimers-project-act
2014 Comments [Last Updated July 2015]
Full HTML Version   2014-public-comments-national-plan-alzheimers-disease-and-national-alzheimers-project-act
2013 Comments [Last Updated July 2015]
Full HTML Version   2013-public-comments-national-plan-alzheimers-disease-and-national-alzheimers-project-act
2012 Comments [Last Updated July 2015]
Full HTML Version   2012-public-comments-national-plan-alzheimers-disease-and-national-alzheimers-project-act
2011 Comments [Last Updated July 2015]
Full HTML Version   2011-public-comments-national-plan-alzheimers-disease-and-national-alzheimers-project-act

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Meetings Outside Advisory Council

Meetings scheduled pertaining to Alzheimer's disease or related dementias will be added to a list at alzheimers-disease-meetingsevents-outside-napa as we are made aware of them. Below are those that have been added in the last 3 months.

    Alzheimer’s Association International Conference: July 2015
        NIH Website Link   http://www.alz.org/aaic/overview.asp

    Long-Term Care Financing Colloquium: July 2015
ASPE Website Link   past-present-adn-future-understanding-trends-long-term-care-financing-and-americans-conflicting-preferences

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Agency Reports/websites

Reports and websites pertaining to Alzheimer's disease or related dementias will be added to a list of material available at alzheimers-disease-and-dementia-publications-and-websites as we are made aware of them. Below are those that have been added in the last 3 months.

PLEASE NOTE: Information included on this list is not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.

Assessing Cognitive Impairment in Older Patients: A Quick Guide for Primary Care Physicians (June 2015)
NIA Website Link   http://www.nia.nih.gov/alzheimers/publication/assessing-cognitive-impairment-older-patients
Brain Health As You Age: You Can Make A Difference   http://www.acl.gov/Get_Help/BrainHealth/Index.aspx
This webpage offers evidence-based resources that can help professionals, older adults, and people with disabilities promote brain health. You can use the resources to educate yourself and others.
    BRAIN INJURIES: Prevention, Rehabilitation, and Community Living
    ACL Website Link   http://www.acl.gov/Get_Help/BrainHealth/docs/Brain-Health-Brochure-2015.pdf
    Dementia-capable States and Communities: the Basics (2014)
    AoA Website Link   http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/BH-Brief-Dementia-Capable-Basics.pdf
    IDD and Dementia (July 2015)
    Full HTML Version: idd-and-dementia
    Full PDF Version: pdf-report/idd-and-dementia
    Regulatory Review of Adult Day Services: Final Report, 2014 Edition (December 2014)
    Executive Summary: regulatory-review-adult-day-services-final-report-2014-edition-executive-summary
    Full HTML Version: basic-report/regulatory-review-adult-day-services-final-report-2014-edition
    Full PDF Version: /pdf-report/regulatory-review-adult-day-services-final-report-2014-edition-december (317 PDF pages)
    Responding to the Wandering and Exit-seeking Behaviors of People with Dementia (May 2015)
    AoA Website Link   http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/BH-Brief-WanderingExit-Seeking.pdf
    State Entities: Dementia Capability Quality Assurance Assessment Tool
    AoA Website Link   http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/State-Entities-Dementia-Capability-Dementia-Capability-QA-Tool.docx
    Translating Innovation to Impact: Evidence-based Interventions to Support People with Alzheimer's Disease and Their Caregivers at Home and in the Community (September 2012)
    AoA Website Link   http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/TranslatingInnovationtoImpactAlzheimersDisease.pdf

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Acronyms

    List of Acronyms Used Regarding Alzheimer's [Last Updated March 10, 2015]
        Full HTML Index   list-acronyms-used-regarding-alzheimers

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Preliminary Information

    PRESS RELEASE: Non-Federal Members Named to HHS Advisory Council on Alzheimer's [Available August 23, 2011]
        Full HTML Version   non-federal-members-named-hhs-advisory-council-alzheimers
        Full PDF Version   Non-Federal Members Named to HHS Advisory Council on Alzheimer's (1 PDF page)

    Federal Register Notice Establishing the Panel & Call for Nominations [Available June 10, 2011]
        Full HTML Version   /pdf-report/fy2016-federal-medical-assistance-percentages
        Full PDF Version   Federal Register Notice Establishing the Panel and Call for Nominations (1 PDF page)

    National Alzheimer's Project Act [Available June 10, 2011]
        Full PDF Version   National Alzheimer's Project Act (5 PDF page)

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