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 Alzheimer's disease and related dementias (AD/ADRD). The Advisory Council provided comments on the first National Plan for AD/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.
Answers to Frequently Asked Questions about the Advisory Council and their meetings are answered below.
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November 2020 Advisory Council Meeting Material (added October 2020)
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Q: What is the Advisory Council on Alzheimer's Research Care and Services?
A: The National Alzheimer's Project Act (NAPA), enacted in 2011, required the Secretary of HHS to establish the Advisory Council on Alzheimer's Research, Care, and Services. The Advisory Council meets quarterly to discuss programs that impact people with AD/ADRD and their caregivers. It comprises members representing a number of federal agencies who work on dementia, and several members from outside the government, who provide their expertise to help the Secretary make progress on this disease.
Q: What is the Advisory Council doing to address Alzheimer's disease and related dementias?
A: The Advisory Council makes recommendations about ways to improve the health outcomes of people with these conditions and to reduce the financial impact of AD/ADRD. The Council provides feedback on gaps or progress in the work of National Plan to Address Alzheimer's Disease by writing recommendations, which are submitted both to the Secretary of HHS and Congress. The Advisory Council evaluates and documents the implementation of the recommendations through annual updates to the National Plan.
Q: What is the National Plan to Address Alzheimer's Disease?
A: The National Plan, originated in 2012, aims to both prevent future cases of AD/ADRD, and to better meet the needs of the millions of American individuals and families currently facing this disease through five ambitious 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
The National Plan and each of the yearly updates are available at https://aspe.hhs.gov/national-plans-address-alzheimers-disease.
Q: Who is represented on the Advisory Council?
A: The Advisory Council is made up of a mix of members from within the government representing a variety of agencies, including the Administration on Community Living (ACL), the Centers for Medicare and Medicaid Services (CMS), and the National Institutes of Health (NIH), as well as members from outside the government (non-federal members). The mix of federal and non-federal members makes the Advisory Council unique, and encourages collaboration across all sectors. The work of the Council is intended to be national in focus, and requires the engagement of public and private sector stakeholders to provide the Secretary of HHS recommendations for healthy outcomes to help those living with this disease and their caregivers.
A list of the current Advisory Council is available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-members.
Q: How many non-federal members are there on the Advisory Council, and who are they?
A: There are 12 members of the Council from outside the government. These members include:
- Two patient advocates, one of whom is a person living with dementia
- Two caregivers
- Two health care providers
- Two representatives of state health departments
- Two researchers
- Two voluntary health association representatives
There are also 10 federal members on the Council. The federal members represent the following agencies: CMS, ACL, NIH, HRSA, AHRQ, CDC, IHS, DoD, VA, and the National Science Foundation.
A list of the current Advisory Council members is available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-members.
Q: How many nominations are usually received during a new member request for applications?
A: HHS receives a large number of nominations for the openings on the Advisory Council. During the 2017 nominations period, a record number of applications were received, and it shows just how committed people are to bringing their thoughts and expertise to the work of the Council. These included nominees from advocacy organizations, federal agencies, current members of the Advisory Council, and self-nominations. We also received multiple letters of recommendation from colleagues, current Advisory Council members, and Members of Congress.
Q: How are nominees chosen?
A: The initial list of nominations is first cut down by staff in ASPE, based on considerations such as whether nominees had provided the required information, accomplishments, and recommendation letters. This list is then discussed with ASPE leadership to consider other components such as geographic representation, diversity of membership, diversity of message, and group dynamics. A shortened list of a number of top contenders for each member category is sent to the White House Liaison's Office, and from there to the Secretary of HHS and his or her counselors, for final decisions.
Q: Is there a representative of the consumer voice among the new members of the Advisory Council?
A: Because we value the consumer voice and think it is essential for the Council, a patient advocate who also lives with dementia is a member of the Council. The patient advocate position is a 2-year term, due to the progressive nature of the disease.
Q: How can the public participate in meetings of the Advisory Council?
A: Members of the public may attend Advisory Council meetings in person after they RSVP to HHS and receive clearance by HHS security. If they wish to share comments with the Council, time is allocated at every meeting for public comments. Members of the public are also welcome to submit comments to HHS to be read out loud on their behalf if they are unable to attend in person. Members of the public are encouraged to share their comments with the Council at any time by emailing their comments to firstname.lastname@example.org. The quarterly meetings of the Council are webcast live on the HHS website, and all meeting and presentation materials are available on the NAPA website at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings.
Q: When are the meetings of the Advisory Council?
A: Advisory Council meetings occur quarterly, four per fiscal year. The tentative date for the next meeting is announced at the close of the previous meeting. However, dates may change due to a lack of quorum of Advisory Council members, change in room availability, weather conditions, and Federal Government closings. We do not put meeting dates online until they are final so attendees do not make unnecessary travel plans they cannot cancel. The public is informed well in advance of the official meeting date via a Federal Register Notice and a NAPA Listserv announcement. If you would like to be included on the NAPA Listserv, send us an email at email@example.com.
Q: Where can I get more information about the National Alzheimer's Project Act and the work of the Advisory Council?
A: Information on NAPA, past meetings of the Advisory Council, the National Plan, and other related topics can be found at http://aspe.hhs.gov/national-alzheimers-project-act.
What is Alzheimer's Disease
& Related Dementias
Advisory Council on Alzheimer's
Research, Care, & Services
National Plan &
Other NAPA Documents