Advisory Council on Alzheimer's Research, Care, and
Services
PDF Version:
http://aspe.hhs.gov/daltcp/napa/072312/Mtg5-Slides1.pdf
(37 PDF pages)
- Alzheimer’s Research Summit May 14-15, 2012
- Common Alzheimer’s Disease Research Ontology (CADRO) and data
base of supported research
- FY2012 initiatives funded by President’s $50M allocation from
within NIH budget
- FY2013 planning for initiatives supported by President’s
designated $80M additional NIH funding
- Public-private-international partnerships
Alzheimer's Disease Research Summit 2012: Path to Treatment and
Prevention
May 14-15, 2012
National Institutes of Health
U.S. Department
of Health & Human Services
Bethesda, MD
NIH Alzheimer's Disease Research Summit 2012
- Approximately 500 attended both days
- Almost 500 watched nationally and internationally by webcast
- Representatives from 38 states and 8 countries attended
- HHS Secretary Kathleen Sebelius presented the National Plan and NIH
Director, Dr. Francis Collins announced two AD Clinical Trials
- Summit webcast is archived at: http://videocast.nih.gov
Alzheimer's Disease Research Summit Recommendations
- Session 1: Interdisciplinary Approach to Discovering and
Validating the Next Generation of Therapeutic Targets for AD
- Session 2: Challenges in Preclinical Therapy Development
- Session 3: Whom to Treat, When to Treat, and What Outcomes to
Measure
- Session 4: Drug Repurposing and Combination Therapy
- Session 5: Nonpharmacological Interventions
- Session 6: New Models of Public Private Partnerships
- http://www.nia.nih.gov/newsroom/announcements/2012/05/alzheimers-disease-research-summit-offers-research-recommendations
Common Alzheimer's Disease Research Ontology (CADRO)
- The CADRO is a three-tiered classification system jointly
created by National Institute on Aging and the Alzheimer’s Association to
capture the complete range of AD research and AD research-related resources.
- The first level of classification consists of seven categories: five
research and two research resources-related:
- Category A -- Molecular Pathogenesis and Physiology of
Alzheimer’s Disease
- Category B -- Diagnosis, Assessment and Disease Monitoring
- Category C -- Translational Research and Clinical
Interventions
- Category D -- Epidemiology
- Category E -- Care, Support and Health Economics of
Alzheimer’s Disease
- Category F -- Resources for the research community
- Category G -- Consortia and Public Private Partnerships
- Each category is divided into research “topics”; many of
the topics are further divided into “themes”.
- Over 2000 unique AD research projects were coded using the CADRO (for
2008 to 2011) across multiple funding organizations including the National
Institutes of Health, Department of Veterans Affairs, Centers for Disease
Control and Prevention, Agency for Healthcare Research and Quality and the
Alzheimer’s Association.
Alzheimer's Disease Research Portfolio Analysis
- Purpose -- Use the CADRO to quantify and analyze the
collective investment in AD research funding over time across multiple funding
organizations (beginning 2008)
- Examples of how of portfolio can be analyzed:
- Baseline to measure future performance and progress including
implementation of initiatives in response to NAPA and AD Summit
recommendations
- Targeted trend analyses of awarded research by CADRO categories,
topics and themes
- Areas of overlap, duplication, and potential opportunities for
collaboration among funding organizations
- Emerging areas of science and opportunities for translation
- Potential research gaps and areas that may be underfunded
- Next Steps: make projects available to the public through a web-based
searchable database -- End of July 2012.
Alzheimer's Disease Projects Funded by FY 2012 NIH Additional $50
million
On February 7, 2012, Secretary of Health and Human Services Kathleen
Sebelius announced that $50 million would be directed immediately to boost
Alzheimer’s research in FY2012 in response to President Obama signing the
National Alzheimer's Project Act.
The following research projects will be funded:
- AD genome sequencing by NHGRI Genome Centers
- Use of new induced pluripotent stem cell methods to obtain insights
into the cellular processes of Alzheimer’s
- Small Business Alzheimer's Disease Research (STTR)R41/R42 -Phase I,
Phase II, and Fast-Track /Small Business Innovation Research (SBIR) R43/R44
Grant - Phase I, Phase II, and Fast-Track
- Two AD Clinical Trials - one treatment and one prevention
Pilot Trial of Intranasal Insulin for Alzheimer's and MCI
- Pilot: 104 adults with MCI and mild to moderate
Alzheimer’s; placebo, 20 IU insulin, 40 IU insulin for 4 months,
administered with nasal drug delivery device
- Results:
- improved delayed memory in 20 IU group compared with placebo
- preserved general cognition, activities of daily living for
younger participants in both insulin groups
- caregivers for both insulin groups rated participant functional
status higher
- changes in some biomarkers (Aß42 and tau to Aß42
ratio) associated with changes in memory and function
Suzanne Craft et al, Arch Neurol 2012 January; 69(1): 29-38
Amyloid PET Scans in Presymptomatic Early-Onset Alzheimer's
Disease
Colombian Kindred
- N = 5000 living individuals from ~ 25 families
- 1000 with the E280A (Glu280Ala) Presinilin2 mutation
- Autosomal dominant, 100% penetrance
- Median age of MCI = 44 years, dementia = 49 years
Reiman, Fleisher and colleagues
Alzheimer's Disease Research Planning for FY 2013 NIH Additional $80
million
- May 2012 – Alzheimer’s Research Summit
- June 2012 – NIH Planning process to identify FY13 initiatives
- August 2012 – Preparation of Funding Opportunity Announcements
(FOAs)
- September 2012 – Review of proposed initiatives by National
Advisory Council on Aging
- October 2012 – Announcement of FOAs and schedule for
applications, review, and funding in FY13, contingent on availability of funds
Public-Private-International Partnerships
Examples:
- Meeting of international Alzheimer’s research funders:
Alzheimer’s Association/National Institute on Aging July 15, 2012,
Vancouver
- Alzheimer’s disease genetics - July 14, 2012, Vancouver
- Biomarkers World-wide ADNI – July 13, 2012, Vancouver
International CSF biomarkers cooperation
- Recruitment of clinical research participants Alzheimer’s
Association/National Institute on Aging July 10, 2012
- Common Alzheimer’s Disease Research Ontology (CADRO)
CLINICAL SERVICES PROGRESS REPORT
Shari M. Ling M.D
Deputy Chief Medical Officer
Centers for
Medicare & Medicaid Services (CMS)
Center for Clinical Standards &
Quality (CCSQ)
For completion by June 2012
- 2.B.2: Identify and disseminate appropriate assessment tools that can
be used in a variety of outpatient settings including the Medicare Annual
Wellness Visit, to assess cognition.
- 2.F.2: Implement and evaluate new care models to support effective
care transitions for people with AD
- $3.2 million for UCLA's Alzheimer's and Dementia Care program,
which provides comprehensive care, as well as resources and support, to
patients and their caregivers to help families navigate a complex health care
system.
- The program has three main components: a dementia registry, a
needs-assessment of patients listed in the registry, and individualized
dementia-care plans based on those assessments.
- These care plans could include family and peer support groups,
consultations with neurology, psychiatry and geriatrics staff, in-home visits
which include changes to the physical home environment to better serve
patient’s every day needs, and intensive dementia-care monitoring and care
coordination by advanced practice nurses and other health professionals.
- The Alzheimer’s Association describes this model, “as a
paradigm example of how to promote collaboration between health care systems
and community-based organizations to best manage this incurable disorder.”
For completion by July 2012
- 2.A.4: Strengthen the direct-care workforce -- release training
materials for nursing home direct care workforce
- Training is available for providers, clinicians, and surveyors on
Advancing Excellence website and several association, university websites
- Hand in Hand: (distributed to all nursing homes end of
August)
- emphasizes person-centered care, prevention of abuse, and
non-pharmacological interventions
- Comprehensive surveyor trainings in production and available by
September
- 2.D.1: Explore programmatically relevant dementia care guidelines and
measures
- TEP held to review evidence to support the development of QMs to
improve the behavioral health of NH residents
- In September, the measure development contractor will convene a
Technical Expert Panel (TEP) to solicit input regarding the two AP QMs as the
measures move toward NQF endorsement.
- Dementia care quality measures
- Physician Quality Reporting Program implemented in 2012 and is
reportable via registry
- Meaningful Use -staging, cognitive, functional status assessment,
counseling regarding safety, counseling regarding risks of driving and
caregiver education and support.
For completion by December 2012
- 3.D.2: Monitor, report and reduce inappropriate use of
anti-psychotics in nursing homes
- CMS Partnership to Improve Dementia Care
CMS Partnership to Improve Dementia Care
A mission to improve behavioral health among nursing home
residents with dementia and to protect them from unnecessary drug
use
Partnership Overview
Multidimensional approach includes:
- Public Reporting
- First year goal: reduce prevalence rate of antipsychotic drug use
in long-stay nursing home residents by 15% by end of 2012
- Rates of nursing homes’ antipsychotic drug use available on
Nursing Home Compare July 19th (long-stay prevalence; short-stay incidence)
- clear information about nursing home performance to consumers
- accessibility to residents and families
- Partnerships and State-based Coalitions
- State Implementation Calls; 28 Calls Completed as of 7/17
- Engage the ongoing commitment and partnership of stakeholders
including state survey agency and Medicaid agencies, provider groups, resident
advocates, professional associations, QIOs, LANES, consumer groups, ombudsman
and others
- Create or support existing individual state coalitions that
will identify and spread best practices to individual facilities
- Follow-up with Coalition leads to determine the progress of
states’ facilities
- Research
- Conduct research to better understand how the team makes
decisions to use antipsychotic drugs in residents with dementia
- Study factors that influence prescribing practices
- Case studies of about 175 residents in 20-25 nursing homes in
5 States
- Implement treatments to improve overall management of residents
with dementia based on results of study
- Training
- Available for providers, clinicians, and surveyors on Advancing
Excellence website and several association, university websites
- Hand in Hand: series that provides direct care workers
with training that emphasizes person-centered care, prevention of abuse, and
non-pharmacological interventions (distributed to all nursing homes end of
August)
- Two hour-long, comprehensive surveyor trainings in production and
available by September
- Stakeholders Involvement
- AMDA letter distributed in June
- AHCA letter sent out in March and July
- SHM letter -- going out this fall
- Ongoing work with AAGP, AMA, Advocates and others
- Accomplishments April-July 2012
- Newsletter articles, dissemination of partnership goals by
various organizations
- CMS Presentations/Outreach
Joan Weiss, PhD, RN, CRNP
Chief, Geriatrics and Allied Health
Branch
Bureau of Health Professions
Department of Health and Human
Services
Health Resources and Services Adminsitration
Geriatric Education Centers (GEC) Program Activities
- Purpose:
- Provide training to healthcare providers’ on
Alzheimer’s disease (AD) and related dementias
- Goal:
- Improve detection and early intervention of AD and ultimately
improve care for patients and their families
GEC Program Activities
- Revise and update existing evidence based practice curricula related
to AD and related dementias and use the curricula to train interprofessional
teams of health care practitioners. One of the discipline team members must be
medicine
- Provide trainings free-of-charge as continuing education to providers
- Partner with the Quality Improvement Organizations (QIOs),
professional organizations and accreditation bodies to distribute these
trainings more broadly
- Provide the trainings for distribution on a centralized website (site
to be determined by HRSA) and
- Report on the number of trainings provided, number of disciplines,
number of participants, and practice improvement of participants.
- Provide training on the latest clinical guidelines and on how to work
with patients with the disease and their families
- Learn how to assess patients for AD
- Recognize the signs and symptoms of AD
- Manage the disease in the context of other health conditions
- Refer patients to appropriate clinical trials
- Be knowledgeable of long-term services and supports in the community
- Recognize and treat signs of caregiver burden and depression
- Train participants on the tools available to detect cognitive
impairment and appropriate assessment processes for the diagnosis of AD
- Address the unique needs of medically underserved and special
populations including racial and ethnic minorities and individuals with
intellectual disabilities.
- Provide information on the Health Information Portability and
Accountability Act (HIPAA)
- Translate educational materials to other languages to meet the needs
of their communities
West Virginia Geriatric Education Center
- Develop and provide interprofessional health professionals education
and training on AD targeted at primary care, outpatient care, and long-term
care
- Develop and provide interprofessional health professionals education
and training on AD targeted at subspecialty and in-patient hospital based care
Geriatric Education Center of Greater Philadelphia
- Interprofessional training in the care of elders at the end of life
- Development of a maintenance of certification module for physicians
caring for patients with dementia and their families
- Partnership with Quality Improvement Organization and the University
of the Sciences in Philadelphia on issues of restraint reduction and pressure
ulcer prevention in long-term care facilities
New Jersey Geriatric Education Center
- Build on existing partnerships with the Central Plains GEC and the
Gateway GEC
- Train teams to work in long term care facilities including those
engaged in Care Transitions projects with the Quality Improvement Organization
- Build dementia-capable staff in the aging services network by
tailoring curricula for Aging and Disability Resource Centers staff
Contact Information
Joan Weiss, PhD, RN, CRNP
Chief, Geriatrics and Allied Health
Branch
Bureau of Health Professions
Phone Number: 301-443-0403
E-mail
Address: jweiss@hrsa.gov
Advisory Council on Alzheimer's Research, Care, and Services
July
23, 2012
Hunter McKay
Ann Mosher
Administration for Community
Living
National Alzheimer's Project Act Awareness Goals
- Design and conduct a national education and outreach initiative
(Strategy 4.A.1)
- Expand long-term care awareness efforts (Strategy 3.C.2 )
Development Considerations
- Significant resources about Alzheimer’s disease already
exist
- Awareness of Alzheimer’s is already quite high
- Accompanied by significant fear
Strategic Goals
- Purpose: Connect caregivers with existing
resources
- Approach: Use plain language coaching messages
- Key Message Points:
- Acknowledge caregivers
- You don’t have to go it alone
Campaign Parameters
- Target audience:
- Caregivers , especially spouses
- Ages 60 - 75
- Spanish-speaking
- Estimated Funding Level:
- FY 2012 - $4 million
- FY 2013 - $4.2 million included as a part of Secretary’s FY
‘13 budget
- Funds appropriated on a one-year basis
Step One
Develop a New Consumer Resource
Alzheimer's DOT GOV
- Consumer-oriented resource
- Organized by topic and disease stage
- Plain language
- Full Spanish-language site
- Testimonials by Real People
- Authenticity, perspectives of people who have been there
- Real world examples of benefits of finding resources
National Plan Launch
- Media Coverage
- May 15 th Secretary Sebelius announces National Plan and
alzheimers.gov campaign
- Very large volume of stories
- Web Site Visits
- 15,000 unique visitors the first 24 hours
- “Alzheimer’s is…” was the most visited
section
- Prominently featured on NBC Nightly News with Brian Williams
Publications
- The Washington Post
- The Atlanta Journal-Constitution
- Detroit Free Press
- Houston Chronicle
- Financial Times
- The Wall Street Journal
- Time
- Los Angeles Times
- Associated Press
alzheimers.gov
Testimonials
- Goals:
- Use language that is authentic and speaks to target
audience
- Provide sense of help available in each section
- Current testimonials:
- Alan: calling the hotline , paying for services
- Charles: clinical trials, finding out about the disease
- Maggie: what can be done to know more
- Other testimonials planned
Website Evolution
- Working group of subject matter experts
- Periodic updates
- New topics in development
- Coordination among governmental and non-governmental organizations
- Development of content based on consumer preference
Step Two
Make Consumers Aware of the Resource
Integrated Marketing Plan
- Marketing approach to use many forms of media
- Each media format uses similar theme
- Selection of media designed for target segments
- Response to initial media buy will provide data to improve future
media efforts
- Most of all: Make It Sticky
Television Spot
- Television Spot:
- Features caregivers (not persons with Alzheimer’s disease)
- The context is a private moment in a public place
- The theme focuses on the difficultly of caregiving through the
many questions that caregivers have
Other Media
- Radio Spot:
- English and Spanish versions
- Restates the theme using many voices
- Banner Ads
- Question marks float and are clickable to create interactive
experience
- Print /Outdoor Ads
- Major publications (Parade) and outdoor spaces (bus stops)
Advertisement
Media Buy
- Four Components:
- Television
- Radio
- Digital
- Print/Outdoor
- Timetable:
- Television and print to begin August 6
- Print/Outdoor shortly thereafter
Campaign Co-Sponsors
- ACL not permitted to solicit contributions
- Several private interests expressed interest
- Associations & Foundations
- Private corporations
- No Explicit Co-branding in Campaign Materials
- HHS may offer a press release-type acknowledgement of contribution of
co-sponsors
Step Three
Evaluate - Evaluate - Evaluate:
Content: What information do
consumers want?
Outreach: What approach best reaches the target?
Evaluate
- Goal:
- Allow consumer preference and behavior to dictate website design
-- what information do consumers really want?
- Use marketing analytics to improve effectiveness of outreach
particularly digital
- Data Sources:
- Google Analytics
- YouTube Analytics
- Web Site Based Survey
Next Steps
- Expand into Social Media
- Effort to use FaceBook and Twitter to ignite organic conversation
- Outreach to bloggers, FaceBook advertising ect.
- Make better use of earned media:
- Reaction to initial press conference suggests potential for use
of earned media
- Identification of journalists with interests in this area
- Cooperate -- Coordinate - Partner
- Identify networks/partners with an existing interest in this
information
Presentation for the Advisory Council on Alzheimer’s Research,
Care, and Services -- July 23, 2012
Laura Lawrence
Director, Office of Nutrition and Health Promotion
Programs
Administration on Aging, Administration for Community Living
U.S. Department of Health and Human Services
While we all wise we could fast-forward to a time when no one
has Alzheimer's disease...
We're not quite there...
Part of the National Plan to Address Alzheimer's Disease
- Action 3.B.3:
- Review the state of the art of evidence- based interventions [for
individuals with AD and their caregivers] that can be delivered by
community-based organizations.
- HHS will partner with private organizations to convene a
meeting..
Translating Innovation to Impact: Evidence-Based Interventions to
Support People with Alzheimer's Disease and their Caregivers at Home and in the
Community
June 28, 2012
- In partnership:
- Alliance for Aging Research
- Administration on Aging
- Sponsored by:
Meeting Objectives
- Highlight programs that have been brought to scale
- Discuss programs that did not translate well into the community
- Identify gaps in the research
Panel 1 Assisting Individuals with Dementia
- Susan McCurry, PhD
University of Washington, Alzheimer’s Disease Research
Center
(RDAD – Reducing Disability in Alzheimer’s Disease)
- Michelle Barclay, MA
Alzheimer's Association --
Minnesota-North Dakota
(Memory Club and MeetUp & Mentor)
- Sandra Burgener, PhD, APRN-BC, FAAN
University of
Illinois, Urbana
(Multi-Modal Community Based Program for Persons with MCI
or Early-Stage Dementia)
Panel 2 Assisting the Family Caregiver
- Laura Gitlin, PhD
Johns Hopkins Center for Innovative Care in Aging
(Skills2Care)
- Mary Mittelman, DrPH
New York University Comprehensive Center on Brain Aging
(NYU
Caregiver Intervention)
- Leisa Easom, PhD, RN
Rosalynn Carter Institute for Caregiving
(REACH II and GA
translation of Cleveland Managed Care)
Panel 3 Care Coordination and Care Transitions
- David Bass, PhD
Margaret Blenkner Research Institute of Benjamin Rose
(Partners
in Dementia Care and Care Consultation)
- Karen Hirschman, PhD, MSW
University of Pennsylvania School of Nursing
(Transitional Care
Model for Cognitively Impaired Elders)
- Christopher Callahan, MD, FACP
Indiana University Center for Aging Research
(Collaborative
Care Model for Alzheimer’s Disease and Related Dementias)
40 Attendees Inside and Outside Federal Government
- HRSA
- National Institutes of Health
- National Institute on Aging
- Indiana University
- Schott & White Healthcare
- AARP
- Benjamin Rose Institute on Aging
- University of Pennsylvania, School of Nursing, Penn Nursing
Science
- Duke Family Support Program
- National Association of States United for Aging and Disabilities
- Alzheimer's Association
- Brown University
- National Institute of Nursing Research
- National Academy of Sciences
- Alliance for Aging Research
- Baylor College of Medicine
- Washington State University
- Alzheimer's Foundation of America
- N4A
- Institute of Medicine
- Family Caregiver Alliance
- Johns Hopkins Hospital
- Rosalynn Carter Institute for Caregiving
- Centers for Medicare and Medicaid Services, Center for Medicare and
Medicaid Innovation
A Few Initial Thoughts from the Meeting
- There are a number of evidence- based non-pharmacological programs
for individuals with ADRD and their caregivers, some shown to be effective a
decade or more ago
AND
YET
- NONE are widely available across the country
- Some evidence-based non-pharmacological programs are likely more
effective than others for certain people, perhaps due to stage of the disease,
race, ethnicity, relationship with caregiver
AND
SO
- We NEED more information to make right program available to the right
people at the right time
- Although programs are available to help with some of the most
difficult symptoms/situations, widely available programs for other difficult
symptoms/ situations have not been developed and evaluated for ADRD.
AND
SO
- We MUST make developing and testing other programs in the ADRD realm
a high priority
- There are many opportunities in the ACA and within existing federal
programs to expand research, conduct demos and pilots, and broadly implement
effective programs
AND
SO
- We NEED to match opportunities with programs to expand availability
in communities across the country
There are New Opportunities for Research and Broader Availability
We anticipate releasing a white paper, with recommendations, this
September
Video of meeting will be available on DVD and online
July 2012
Goals
- Review the approach to align strategic planning, implementation
tracking, and progress reporting across the Department
- Learn how the development of a new web-based strategic planning tool
will support the National Alzheimer’s Plan
Approach
ASPE is leading the development of a web-based resource for strategic
planning that will help to realize this approach.
- Strengthen agencies’ capacity to develop interconnected logic
models, strategic plans, and implementation plans, and regularly report on
progress;
- Connect strategic plans with performance measures, including those
tracked by ASFR through its Program Performance Tracking System to fulfill
Government Performance and Results Modernization Act requirements;
- Facilitate connections of plans to each other, to reduce duplication
of effort and ensure coordination where appropriate; and
- Enable HHS leadership to track achievement of goals and objectives
across plans.
National Alzheimer's Plan
Strategic Plan and companion Implementation Plan -- Implementation
Tracking -- Progress Reporting
- ASPE will load the National Alzheimer’s Plan into the new
web-based tool this summer.
- HHS agencies will be able to enter their progress on action steps for
which they are responsible. The tool will facilitate reporting by HHS agencies.
- ASPE will be able to create and share reports on progress across
action steps for all partners -- as well as identify any action steps that are
outstanding.
- Indicators of progress can be linked to a broader set of HHS
measures, to connect our effort to those of others across the Department.
- Crosswalking the Alzheimer’s Plan to related plans will be far
easier and will facilitate identifying other plans and other efforts that may
offer the potential to leverage other resources.
Where to?
Top of Page
NAPA Home
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)
Last updated: 07/20/2012
