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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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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PhysicianLetter

CMEbegins

NursingHomes

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Co morbid Conditions

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

hmatheny@brni.org