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

ADVISORY COUNCIL ON ALZHEIMER’S RESEARCH, CARE, AND SERVICES

PDF Version: http://aspe.hhs.gov/daltcp/napa/071913/Mtg9Sum.pdf (23 PDF pages)

Washington, DC

July 19, 2013

Advisory Council Members

General Proceedings

At 9:10 a.m., Chair Dr. Ronald Petersen called the meeting to order.

Dr. Peterson provided an overview of the agenda, which will include a summary of the current status of the National Plan to Address Alzheimer's Disease (national plan), information about several fields related to long-term care services, updates from the three Advisory Council subcommittees, and a discussion about how to plan for research in long-term services and supports (LTSS). Public comments will be received.

Mr. Johns reported that the Alzheimer's Association International Conference (AAIC), which concluded in Boston on July 18, 2013, had approximately 5,000 people in attendance. Researchers made presentations about excellent research being done across the spectrum of Alzheimer's disease. Approximately one-third of the research presentations were from countries outside the United States. Media outlets were well-represented, so information is expected to be disseminated thoroughly to the public.

Mr. Vradenburg stated that British Prime Minister Cameron has made Alzheimer's disease and dementia a critical theme of the United Kingdom presidency of the G8 during 2013. A summit on Alzheimer's disease and dementia will be held in London, December 10-11, 2013, and will be attended by the health ministers of the G8 countries, along with representatives of the World Health Organization. For the first time, an agenda for a global response to Alzheimer's disease will be developed. The conference will address science, regulation, policy, caregiving and caregivers, social impact, finance, and investments. As a follow-up to the summit, four international workshops will take place in 2014 on the themes of finance and investment, caregiving, regulations and policy, and science.

Dr. Peterson introduced a new council member, Dr. Nicholas Kozauer, representing the FDA and noted that Ms. McMahon is retiring from the Iowa Department of Public Health.

Advisory Council members introduced themselves.

Update on National Plan to Address Alzheimer's Disease

Dr. Lamont highlighted the progress made on the national plan:

Dr. Lamont summarized the national plan as it has been updated with 2013 recommendations made by the Advisory Council and gave examples of some of the strategic activities:

The following comments and responses were made following Dr. Lamont's presentation:

Consumer Protections for Older Adults with Cognitive Impairment

Ms. Naomi Karp, a policy analyst in CFPB's Office for Older Americans, described the mission of CFPB and gave an overview of the bureau's initiatives related to older Americans.

The following comments and responses were made following Ms. Karp's presentation.

Private Long-Term Care Insurance

Dr. Marc A. Cohen, chief research and development officer ofLifePlans, Inc., described the current state of the private long-term care insurance industry.

The following comments and responses were made following Dr. Cohen's presentation.

Long-Term Care Awareness Campaign

Mr. Hunter McKay, a program manager for long-term care planning at ACL, described activities undertaken in relation to Strategy 3.C.2 of the national plan, Expand Long-Term Care Awareness Efforts.

The following comments and responses were made following Mr. McKay's presentation.

Updates from Federal Subcommittee Chairs

Dr. Hodes reported on activities related to the Research Subcommittee.

Discussion related to Dr. Hodes'sreport included the following comments.

Dr. Ling reported on activities related to the Clinical Care Subcommittee.

Discussion related to Dr. Ling's report included the following comments.

Dr. Tilly reported on activities related to the LTSS Subcommittee.

The following comment was made following Dr. Tilly's report.

Research Agenda for Long-Term Services and Supports

Dr. Lamont reported that a group of staff from a number of federal agencies had met to develop a draft research agenda for discussion by the Advisory Council. The group agreed to use the following three principles in developing the research plan: (1) use the perspective of people with Alzheimer's disease and their caregivers to identify where they experience gaps in care and support, (2) identify existing research that might be ready for translation, and (3) focus on areas of care and supports specifically relevant for people with Alzheimer's disease and their caregivers.

Dr. Lamont presented a draft research plan that includes four steps.

Discussion related to the draft research agenda included the following comments.

Advisory Council Operational Issues

Public Input

The format for public input at the Advisory Council meeting is being reassessed. At future meetings it will be changed to allow individuals more time to speak. To accommodate this, the total number of speakers at each meeting will be limited. A rotation system of some sort will be devised so that everyone wishing to address the council will have an opportunity at different meetings.

The public comments portion of the meeting was moderated by Dr. Lamont.

Nine members of the public presented testimony either in person or by e-mail. They included persons living in the early stages of Alzheimer's disease and related dementias, family members and caregivers of persons with cognitive disabilities, and representatives from the AAR, the Alzheimer's Association, the Alzheimer's Foundation of America, the Association for Frontotemporal Degeneration (AFTD), Leaders Engaged in Alzheimer's Disease (LEAD), and the National Task Group on Intellectual Disabilities and Dementia Practices (NTG).

Speakers made the following recommendations and observations.

Concluding Remarks

Chair Dr. Ronald Petersen thanked the public participants for their input, noting that such contributions help ground the Advisory Council's feelings about dementia.

The next Advisory Council meeting will take place on October 28, 2013.

The meeting adjourned at 4:38 p.m.

Minutes submitted by Helen Lamont (ASPE).
All presentation slides are available at http://aspe.hhs.gov/daltcp/napa/.


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Last updated: 08/09/2013