an overview of the alzheimer's outreach and registry program and the national alzheimer's...
TRANSCRIPT
An Overview of the Alzheimer's Outreach and Registry Program
and the National Alzheimer's Plan
26th Annual Tennessee Alzheimer’s Symposium
June 14, 2012 Knoxville, TN
Helen Matheny, MS, APR
Director, Alzheimer’s Outreach and Registry Program
Blanchette Rockefeller Neurosciences Institute
Member, National Advisory Council on Alzheimer’s Research, Care and Services
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Objectives
Identify risk factors for Alzheimer’s disease,
Describe policy initiatives with the aim to enhance care for dementia patients and
Describe the five goals of the national Alzheimer's plan
Alzheimer’s Disease5.4 million Americans are living with
Alzheimer's disease. One in eight older Americans has Alzheimer's
disease. Alzheimer's disease is the sixth-leading cause
of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.
More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer's and other dementias.
Payments for care are estimated to be $200 billion in the United States in 2012.
Source: Alzheimer’s Association
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Alzheimer’s Disease and Related DementiasThere are many types of dementia:
• Alzheimer’s Disease• Vascular Dementia• Mixed Dementia• Dementia with Lewy Bodies• Parkinson’s-Dementia Complex• Frontotemporal Dementia• Creutzfeldt-Jakob Disease• Normal Pressure Hydrocephalus• Huntington’s Disease• Korsakoff Syndrome• Numerous Others
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Alzheimer's Disease Risk Factors Numerous studies confirm an association of
Alzheimer’s Disease with many conditions/circumstances:◦ Age◦ Genetics/Family history◦ Atherosclerosis◦ Hypertension◦ Educational achievement◦ Diabetes/Metabolic syndrome◦ Gender◦ Head injury◦ Down Syndrome◦ Social isolation◦ Physical inactivity
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Alzheimer’s Disease Risk Factors
65 or < 65-70 70-75 75-80 80-85 85+0
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Prevalence of dementia by age
Age
% w
ith d
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a
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Alzheimer’s Disease Risk FactorsAtherosclerotic CVD as an
Alzheimer’s disease risk factor◦ A longitudinal study of Medicare recipients
in Manhattan (NY) demonstrated increased risk of AD, and an earlier age of onset of dementia for those with a history of stroke.
Honig, Lawrence “Stroke and the Risk of Alzheimer Disease” Arch Neurology 60 (2003) 1707-1712.
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Alzheimer’s Disease Risk FactorsHypertension as Alzheimer’s disease
risk factor◦ Utilizing systematic literature searches, researchers
have attempted to establish evidence-based guidelines for the prevention of AD. **The only grade A evidenced recommendation they can identify from their exhaustive literature search is control of vascular risk factors, especially hypertension. The treatment of systolic pressure over 160 mm Hg in persons over age 60 is recommended; target is <140 mm Hg.
Patterson, Christopher et al, “Diagnosis and treatment of dementia: Risk assessment and primary prevention of Alzheimer disease” CMAJ 178(5), 2008, 548-56.
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Founded in1999 in memory of Blanchette Ferry Hooker Rockefeller, the mother of U.S. Senator John D. Rockefeller, IV, who died of Alzheimer’s disease.
We are a unique, independent, non-profit institute dedicated to the study of both memory and memory disorders.
BRNI operates as a 501(c) 3 charitable organization.
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Memory Disorders Amnesia - memory and learning are affected out of all
proportion to other cognitive functions in an otherwise alert and responsive patient.
Traumatic Brain Injury (TBI) - caused by an outside force, and may lead to cases of amnesia depending on the severity of the injury.
Dementia - a large class of disorders characterized by the progressive deterioration of thinking ability and memory as the brain becomes damaged.
Alzheimer’s Disease (AD) – a form of dementia caused primarily by aging associated with senile plaques, extracellular deposits of amyloid in the gray matter of the brain.
Huntington's Disease - an inherited progressive disorder of the brain that leads to uncontrolled movements, emotional instability, and loss of intellectual faculties – associated with dying portions of the brain.
Parkinson's Disease (PD) - a degenerative disorder of the central nervous system that often impairs the sufferer's motor skills, speech, and other functions – associated with the control of dopamine.
Stroke (Cerebrovascular Accident or CVA) - is the rapid loss of brain function(s) due to disturbance in the blood supply to the brain.
BRNI’s Efforts to Address Alzheimer’s Disease
DiagnosticsTherapeuticsAlzheimer’s Outreach and Registry
Program
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Alzheimer’s Disease Outreach and Registry Program
The mission of the Alzheimer’s Disease Outreach Program is to provide physicians with training and resources to improve screening, diagnosis, treatment and care of persons with Alzheimer’s disease and related dementias.
• ~ 46,000 Alzheimer’s patients in WV
• Some are in nursing homes (2-3,000?)
• Where are the rest?• Who is looking after them?• Are they being treated?• What do they need?
Alzheimer’s Disease in West Virginia
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• Impact on medical system? Enough healthcare
professionals? Enough beds? Enough facilities?
• Impact on support systems? Social services Long-term care
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Alzheimer’s Disease in West Virginia
• WVADR generates statistical summaries of demographic, diagnostic and treatment information
• WVADR advises physicians, patients, caregivers and decision makers at local and state levels about the medical, social and economic needs created by Alzheimer’s disease in West Virginia
West Virginia Alzheimer’s Disease Registry (WVADR)
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• WVADR is an encrypted, password-protect, database meeting or exceeding all Federal regulations for protecting patient information
• Unique username and password
• Physician credentials confirm your diagnosis, treatment or care for a dementia patient but . . . anyone in the office can enter the patient data, data entry takes about 10 min.
• Mandated by State Law (W. Va. Code §16-5R)
West Virginia Alzheimer’s Disease Registry
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West Virginia Alzheimer’s Disease Registry
What do we need?
•Physician information• name, contact information, and license
number (helps ensure validity of the data)
•Patient information• demographics• diagnosis• treatment• co morbid conditions• exposure
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West Virginia Alzheimer’s Disease Registry
New nursing home data driving the agenda◦Older patients, more co-morbidity, end-stage
disease◦Need for more specialized facilities, staff,
funding?
Need family physician involvement◦Community-based patients aren’t represented◦Losing impetus for more specialists, funding,
resources, day care, in-home care, respite for caregivers
Outreach Program:Continuing Medical Education“Alzheimer’s Disease Update for
Physicians”“Diagnosing and Treating
Alzheimer’s Disease: The Latest Developments”
“Behavioral and Psychological Symptoms in Dementia”
“Palliative Care in Dementia”
Outreach Program:Creating a Quality System of CarePhysician Group
◦Challenges/barriers◦Implementing best practice guidelines
Partners◦Alzheimer’s Assoc.◦AARP◦Bureau of Sr. Services◦WV Healthcare Association◦Academy of Family Physicians◦West Virginia Center for End of Life Care◦WV Chamber of Commerce ◦Local Chambers of Commerce◦Hospice
National Alzheimer’s Project Act
On January 4, 2011, the President signed into law the National Alzheimer’s Project Act (NAPA), requiring the Secretary of the U.S. Department of Health and Human Services (HHS) to establish the National Alzheimer’s Project to:◦Create and maintain an integrated
national plan to overcome Alzheimer’s disease.
◦Coordinate Alzheimer’s disease research and services across all federal agencies.
◦Accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer’s disease.
National Alzheimer’s Project Act◦Improve early diagnosis and coordination
of care and treatment of Alzheimer’s disease.
◦Improve outcomes for ethnic and racial minority populations that are at higher risk for Alzheimer’s disease.
◦Coordinate with international bodies to fight Alzheimer’s globally.
The Law RequiresThe law also establishes the Advisory
Council on Alzheimer’s Research, Care, and Services and requires the Secretary of HHS, in collaboration with the Advisory Council, to create and maintain a national plan to overcome Alzheimer’s disease (AD).
An annually updated national plan submitted to Congress.
Annual recommendations for priority actions to improve health outcomes for individuals with Alzheimer’s and lower costs to families and government programs.
Annual evaluation of all federally funded efforts in Alzheimer’s research, care and services.
National Plan to Address Alzheimer’s DiseaseFive ambitious goals:1) Prevent and Effectively Treat
Alzheimer's Disease by 20252) Optimize Care Quality and Efficiency3) Expand Supports for People with
Alzheimer's Disease and Their Families4) Enhance Public Awareness and
Engagement5) Track Progress and Drive Improvement
Advisory Council Members Anita Albright, Advisory Council
Member Regina Benjamin, Surgeon
General Jim Burris, VA Laurel Coleman, Advisory Council
Member Janet Collins, CDC Bruce Finke, IHS Victor Freeman, HRSA Eric Hall, Advisory Council Member Richard Hodes, NIH David Hoffman, Advisory Council
Member Harry Johns, Advisory Council
Member Russell Katz, FDA Helen Lamont, Designated Federal
Officer Jennifer Manly, Advisory Council
Member Helen Matheny, Advisory Council
Member
Don Moulds, ASPE Cindy Padilla, AoA Anand Parekh, OASH Ronald Petersen, Advisory Council
Chair David Hyde Pierce, Advisory
Council Member Marian Scheinholtz, SAMHSA William Shrank, CMS Bill Spector, AHRQ Amber Story, NSF Laura Trejo, Advisory Council
Member Brian Unwin, DoD George Vradenburg, Advisory
Council Member Geraldine Woolfolk, Advisory
Council Member
Advisory Council Process
Inventories of Federal EffortsOpportunities and GapsDevelopment of Subcommittees
◦Research◦Clinical Care◦Long-Term Services and Supports
First draft developed for comment until March 30
Second draft available early April
Clinical Care SubcommitteeDetectionDiagnosis and Care PlanningCare throughout the stages-Quality
IndicatorsCare throughout the stages-Medical
Home Care throughout the stages-Caregiver
SupportHospitalizationWorkforce
Recommendations of the Public Members of the Advisory Council on Alzheimer’s Research, Care and Services
http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf
Latest DevelopmentsNational Plan and Advisory Council
Recommendations submitted to US Health and Human Services Secretary Sebelius and members of Congress
Alzheimer’s Disease Research Summit 2012
Public Awareness Campaign ◦Alzheimer’s.gov website◦Public Awareness Announcements
Alzheimer’s Disease Research Summit 2012: Path to Treatment and Prevention May 14-15, 2012National Institutes of HealthBethesda, MD
Research Summit Sessions
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: Who to treat, when to treat and what outcomes to measure?
Research Summit Sessions
Session 4: Drug repurposing and combinational therapy
Session 5: Non-pharmacological interventions
Session 6: New models of Public-Private Partnership (PPP)
Emerging ThemesRecognize the heterogeneity and the
multifactorial nature of the disease.Employ new research paradigms
such as systems biology and network pharmacology.
Enable rapid and extensive sharing of data, disease models, and biological specimens.
Emerging ThemesBuild new multidisciplinary translational
teams and create virtual and real spaces where these teams can operate.
Develop strategies to overcome intellectual property barriers to Alzheimer’s disease drug development.
Develop new public-private partnerships.
Establish a National Institutional Review Board (IRB) for Alzheimer’s disease clinical research.
For additional information
National Alzheimer’s Project Actaspe.hhs.gov/daltcp/napa
Alzheimer’s Disease Research Summit Recommendations
nia.nih.gov
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Thank You
For more information:
Helen MathenyDirector, Alzheimer’s Outreach and Registry ProgramBlanchette Rockefeller Neurosciences
Institute