HHS/ASPE. U. S. Department of Health and Human Services.Background

National Alzheimer's Project Act

***** NEW THIS MONTH *****


   ** APRIL 2015 ADVISORY COUNCIL MEETING ANNOUNCEMENT**  

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
Acronyms
Preliminary Information

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

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 will make 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 is developing will be presented to the Advisory Council for review.

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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 http://aspe.hhs.gov/daltcp/napa/members.shtml.

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Advisory Council Meeting

April 28, 2015 Advisory Council Meeting

NOTE: Because of the increased interest in Advisory Council meetings, we ask that organizations limit attendees to 5 or less people. If space is still available, we can let the organization contact know 2 days before the cutoff in case they would like to submit more names.

The next meeting of the Advisory Council on Alzheimer's Research, Care, and Services will be held on Tuesday, April 28, 2015 from 8:30am to 5:00pm EDT. The meeting will be held at the U.S. Department of Health and Human Services (HHS), 200 Independence Avenue, S.W., Room 800, Washington, D.C. 20201, and webcast live on http://www.hhs.gov/live. Please allow 30 minutes to go through security and walk to the meeting room.

The Advisory Council will build on the goals of the White House Conference on Aging (WHCOA) through a half-day session with dementia-focused panels on each WHCOA topic area: healthy aging, long-term services and supports, retirement security, and elder justice. Following this session, the Advisory Council will hold a brief discussion on the 2015 Update to the National Plan to Address Alzheimer's, including subcommittee updates, and a discussion of international events on dementia.

Public Attendance:  Seating is limited. Individuals who wish to participate should send an email to napa@hhs.gov with "April 28 Meeting Attendance" in the Subject line by Friday, April 17, 2015. Names need to be put on a list of expected attendees and forwarded to the security officers at HHS. Any interested member of the public who is a non-U.S. citizen should include this information at the time of registration to ensure that the appropriate security procedure to gain entry to the building is carried out. Although the meeting is open to the public, procedures governing security and the entrance to federal buildings may change without notice. Each attendee needs a photo ID to gain entrance into the building.

Public Input:  Time is allocated on the agenda to hear public comments. The time for oral comments will be limited to two (2) minutes per individual. Attendees who wish to make public comments should include that information in their "April 28 Meeting Attendance" email; this information is also needed by Friday, April 17, 2015.

In lieu of oral comments, formal written comments may also be submitted for the record to:

Rohini Khillan
HHS Office of the Assistant Secretary for Planning and Evaluation
Room 424E, Humphrey Building
200 Independence Avenue, SW
Washington DC, 20201

Comments may also be emailed to napa@hhs.gov, and should be received before the day of the meeting.

Those submitting written comments should identify themselves and any relevant organizational affiliations. Comments will be shared with the Advisory Council.

Meeting Information Available

Material from this Advisory Council meeting, as well as the discussion description and material from past meetings, are listed at http://aspe.hhs.gov/daltcp/napa/meetings.shtml.

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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.

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 http://aspe.hhs.gov/daltcp/napa/plans.shtml#Plans.

National Plan to Address Alzheimer's Disease: 2014 Update [Available April 29, 2014]
Full HTML Version   http://aspe.hhs.gov/daltcp/napa/NatlPlan2014.shtml
Full PDF Version   http://aspe.hhs.gov/daltcp/napa/NatlPlan2014.pdf (83 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 http://aspe.hhs.gov/daltcp/napa/plans.shtml#Recom.

2015 Recommendations of the Public Members of the Advisory Council on Alzheimer's Research, Care, and Services [Available March 10, 2015]
Full HTML Version   http://aspe.hhs.gov/daltcp/napa/2015PubMemRec.shtml
Full PDF Version   http://aspe.hhs.gov/daltcp/napa/2015PubMemRec.pdf (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   http://aspe.hhs.gov/daltcp/napa/milestones/index.shtml [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 February 12, 2015]
Full HTML Index   http://aspe.hhs.gov/daltcp/napa/Comments/PubComIndex.shtml
2014 Comments [Last Updated February 12, 2015]
Full HTML Version   http://aspe.hhs.gov/daltcp/napa/Comments/2014PubCom.shtml
2013 Comments [Last Updated February 5, 2015]
Full HTML Version   http://aspe.hhs.gov/daltcp/napa/Comments/2013PubCom.shtml
2012 Comments [Last Updated February 3, 2015]
Full HTML Version   http://aspe.hhs.gov/daltcp/napa/Comments/2012PubCom.shtml
2011 Comments [Last Updated January 2, 2015]
Full HTML Version   http://aspe.hhs.gov/daltcp/napa/Comments/2011PubCom.shtml

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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 http://aspe.hhs.gov/daltcp/napa/outside.shtml as we are made aware of them. Below are those that have been added in the last 3 months.

Experts on Advanced Dementia Meeting Announcement: January 21, 2015 [Available December 16, 2014]
Full HTML Version   http://aspe.hhs.gov/daltcp/napa/experts/012115Ann.shtml
Full PDF Version   http://aspe.hhs.gov/daltcp/napa/experts/012115Ann.pdf (1 PDF pages)

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Agency Reports

Reports and websites pertaining to Alzheimer's disease or related dementias will be added to a list of material available at http://aspe.hhs.gov/daltcp/napa/reports.shtml 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.

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Acronyms

List of Acronyms Used Regarding Alzheimer's [Last Updated March 10, 2015]
Full HTML Index   http://aspe.hhs.gov/daltcp/napa/acronyms.shtml

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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   http://aspe.hhs.gov/daltcp/napa/PR-082311.htm
Full PDF Version   http://aspe.hhs.gov/daltcp/napa/PR-082311.pdf (1 PDF page)
Federal Register Notice Establishing the Panel & Call for Nominations [Available June 10, 2011]
Full HTML Version   http://aspe.hhs.gov/daltcp/napa/fedreg.htm
Full PDF Version   http://aspe.hhs.gov/daltcp/napa/fedreg.pdf (1 PDF page)
National Alzheimer's Project Act [Available June 10, 2011]
Full PDF Version   http://aspe.hhs.gov/daltcp/napa/PLAW-111publ375.pdf (5 PDF page)

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Where to?

Top of Page

Home Pages:
Office of Disability, Aging and Long-Term Care Policy (DALTCP)
Assistant Secretary for Planning and Evaluation (ASPE)
U.S. Department of Health and Human Services (HHS)

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

Last updated: 04/01/2015