2014-2015 NIH Alzheimer’s disease progress report available online
- Understanding the biology of Alzheimer’s, related dementias, and the aging brain
- Identifying genetic influences on risk for late-onset Alzheimer’s, the most common form
- Detecting the earliest Alzheimer’s-related brain changes, including further development of biomarkers to track the onset and progression of Alzheimer’s
- Understanding gender and racial differences in the impact of Alzheimer’s
- Stepping up translational research enabling the design and testing of new drugs
- Testing in clinical trials potential new therapies to prevent, delay or treat Alzheimer’s
- Finding better ways to support caregivers
The report includes searchable tables of NIA-funded clinical trials that are testing promising interventions for Alzheimer’s disease, mild cognitive impairment, age-related cognitive decline, delirium and dementia-related psychiatric conditions and symptoms—agitation, apathy and depression.
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NATIONAL PLAN TO ADDRESS ALZHEIMER’S DISEASE:
TABLE OF CONTENTS
- Vision Statement
- National Alzheimer’s Project Act
- Alzheimer's Disease and Related Dementias
- The Challenges
- Framework and Guiding Principles
- Goals as Building Blocks for Transformation
- 2015 Update
- Goal 1: Prevent and Effectively Treat Alzheimer's Disease by 2025
- Strategy 1.A: Identify Research Priorities and Milestones
- Strategy 1.B: Expand Research Aimed at Preventing and Treating Alzheimer's Disease
- Strategy 1.C: Accelerate Efforts to Identify Early and Presymptomatic Stages of Alzheimer's Disease
- Strategy 1.D: Coordinate Research with International Public and Private Entities
- Strategy 1.E: Facilitate Translation of Findings into Medical Practice and Public Health Programs
- Goal 2: Enhance Care Quality and Efficiency
- Strategy 2.A: Build a Workforce with the Skills to Provide High-Quality Care
- Strategy 2.B: Ensure Timely and Accurate Diagnosis
- Strategy 2.C: Educate and Support People with Alzheimer's Disease and Their Families upon Diagnosis
- Strategy 2.D: Identify High-Quality Dementia Care Guidelines and Measures Across Care Settings
- Strategy 2.E: Explore the Effectiveness of New Models of Care for People with Alzheimer's Disease
- Strategy 2.F: Ensure that People with Alzheimer's Disease Experience Safe and Effective Transitions between Care Settings and Systems
- Strategy 2.G: Advance Coordinated and Integrated Health and Long-Term Services and Supports for Individuals Living with Alzheimer's Disease
- Strategy 2.H: Improve Care for Populations Disproportionally Affected by Alzheimer's Disease and for Populations Facing Care Challenges
- Goal 3: Expand Supports for People with Alzheimer's Disease and Their Families
- Strategy 3.A: Ensure Receipt of Culturally Sensitive Education, Training, and Support Materials
- Strategy 3.B: Enable Family Caregivers to Continue to Provide Care while Maintaining Their Own Health and Well-Being
- Strategy 3.C: Assist Families in Planning for Future Care Needs
- Strategy 3.D: Maintain the Dignity, Safety and Rights of People with Alzheimer's Disease
- Strategy 3.E: Assess and Address the Housing Needs of People with Alzheimer's Disease
- Goal 4: Enhance Public Awareness and Engagement
- Strategy 4.A: Educate the Public about Alzheimer's Disease
- Strategy 4.B: Work with State, Tribal, and Local Governments to Improve Coordination and Identify Model Initiatives to Advance Alzheimer's Disease Awareness and Readiness across the Government
- Strategy 4.C: Coordinate United States Efforts with Those of the Global Community
- Goal 5: Improve Data to Track Progress
- Strategy 5.A: Enhance the Federal Government's Ability to Track Progress
- Strategy 5.B: Monitor Progress on the National Plan
- Appendix 1: List of Participating Departments and Agencies
- Appendix 2: Implementation Milestones
- List of Acronyms Used
For millions of Americans, the heartbreak of watching a loved one struggle with Alzheimer's disease is a pain they know all too well. Alzheimer's disease burdens an increasing number of our Nation's elders and their families, and it is essential that we confront the challenge it poses to our public health.
-- President Barack Obama
NATIONAL ALZHEIMER’S PROJECT ACT
On January 4, 2011, President Barack Obama signed into law the National Alzheimer's Project Act (NAPA) (Public Law 111-375), 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.
- Improve early diagnosis and coordination of care and treatment of Alzheimer's disease.
- Decrease disparities in Alzheimer's disease for ethnic and racial minority populations that are at higher risk for Alzheimer's disease.
- Coordinate with international bodies to fight Alzheimer's disease globally.
The law also establishes the Advisory Council on Alzheimer's Research, Care, and Services (Advisory Council) and requires the Secretary of HHS, in collaboration with the Advisory Council, to create and maintain a National Plan to overcome Alzheimer's disease and related dementias (ADRD).
NAPA offers a historic opportunity to address the many challenges facing people with Alzheimer's disease and their families. Given the great demographic shifts that will occur over the next 30 years, including the doubling of the population of older adults, the success of this effort is of great importance to people with ADRD and their family members, public policy makers, and health and social service providers.
ALZHEIMER'S DISEASE AND RELATED DEMENTIAS
Alzheimer's disease (AD) is an irreversible, progressive brain disease that affects as many as 5.1 million Americans.1
It slowly destroys brain function, leading to cognitive decline (e.g., memory loss, language difficulty, poor executive function), behavioral and psychiatric disorders (e.g., depression, delusions, agitation), and declines in functional status (e.g., ability to engage in activities of daily living (ADLs) and self-care).2
In 1906, Dr. Alois Alzheimer first documented the disease when he identified changes in the brain tissue of a woman who had memory loss, language problems, and unpredictable behavior. Her brain tissue included abnormal clumps (amyloidal plaques) and tangled bundles of fibers (neurofibrillary tangles). Brain plaques and tangles, in addition to the loss of connections between neurons, are the main features of AD.3
In addition to Alzheimer's disease, this National Plan addresses related dementias, consistent with the approach Congress used in NAPA. Related dementias include frontotemporal dementia (FTD), Lewy body, mixed, and vascular dementias. It is often difficult to distinguish between ADRD in terms of clinical presentation and diagnosis. Some of the basic neurodegenerative processes have common pathways. People with dementia and their families face similar challenges in finding appropriate and necessary medical and supportive care. As such, many of the actions described in this plan are designed to address these conditions collectively.
The first symptom of Alzheimer's disease, and sometimes ADRD, is often memory impairment. However, in ADRD, behavioral, visual, sleep disruption or motor symptoms can often be the presenting symptoms. As the disease progresses, memory can decline, and other functions like language skills and decision making become more difficult. Personality and behavior changes often occur. Over time, a person with the disease may no longer recognize family and friends. Eventually, persons who survive with AD and ADRD are completely reliant on others for assistance with even the most basic ADLs, such as eating.4, 5
In more than 90% of people with ADRD, symptoms do not appear until after age 60, and the incidence of the disease increases with age. The causes of ADRD are not completely understood, but researchers believe they include a combination of genetic, environmental, and lifestyle factors.6
The importance of any one of these factors in increasing or decreasing the risk of developing Alzheimer's disease may differ from person to person. In rare cases, known as early or younger-onset AD, people develop symptoms of AD in their 30s, 40s, or 50s. A significant number of people with Down syndrome develop dementia in their 50s, often placing increased burden on their families and caregivers.
ADRD is a major public health issue and will increasingly affect the health and well-being of the population. Unless the disease can be effectively treated or prevented, the number of Americans with Alzheimer's disease will increase significantly in the next two decades. The number of people age 65 and older in the United States is expected to grow from an estimated 47.8 million in 2015 to 74.1 million in 2030. The prevalence of people with ADRD doubles for every 5-year interval beyond age 65. Without a preventative treatment or cure, the significant growth in the population over age 85 that is estimated to occur between 2015 and 2030 (from 6.3 million to 9.1 million) suggests a substantial increase in the number of people with AD.
The disease places enormous emotional, physical, and financial stress on individuals who have it and their family members. Unpaid caregivers, such as family members and friends, provide the majority of care for people with ADRD in the community. Unpaid caregivers often do not identify themselves as such; they are a wife, daughter, husband, parent, son, or friend helping a person whom they care about. However, the intensive support required for a person with ADRD can negatively impact the caregiver's emotional and physical health and well-being, and their ability to work. Unpaid caregivers often report symptoms of depression and anxiety, and they have poorer health outcomes than their peers who do not provide such care.7
Dementia care costs are significant and often a burden to families providing unpaid care. Recent estimates from one nationally representative study found that paid and unpaid care costs of caring for people older than age 70 with dementia in the United States in 2010 were between $159 billion and $215 billion. These figures include direct medical expenditures, costs for long-term services and supports (LTSS) including institutional and community care, and the two different estimates of the value of unpaid care provided by family members and friends. These costs could rise dramatically with the increase in the numbers of older adults in coming decades. Care costs per person with dementia in 2010 ranged from $41,000 to $56,000 depending on how unpaid care costs were estimated. These national dementia care costs are comparable to, if not greater than, those for heart disease and cancer.8
Caring for people with the disease also strains health and long-term care systems. Individuals with ADRD use a disproportionate amount of health care resources; for instance, they are hospitalized 2-3 times as often as people the same age who do not have the disease.9
Similarly, while people living in nursing homes are a small percentage of the older population, nearly half (48%) of nursing home residents have ADRD.10
As the number of people with ADRD grows over the next two decades, this disease will place a major strain on these care systems as well as on Medicare and Medicaid, the major funders of this care. Although Medicaid, a program for eligible low income Americans, covers long-term care services (custodial care), Medicare does not.
This National Plan is designed to address the major challenges presented by Alzheimer's disease:
While research on ADRD has made steady progress, there are no pharmacological or other interventions to definitively prevent, treat, or cure the disease.
While HHS and other groups have taken steps to develop quality measures to assess dementia care and to improve the training of the health and long-term care workforce -- both paid and unpaid caregivers -- there is room for improvement.
Family members and other unpaid caregivers, who take on the responsibility of caring for a loved one with ADRD, need services and support. The majority of people with ADRD live in the community, where their families provide most of their care. The toll of caregiving can have major implications for caregivers and families as well as population health, with about one-third of caregivers reporting symptoms of depression.11, 12
Stigmas and misconceptions associated with ADRD are widespread and profoundly impact the care provided to and the isolation felt by people with ADRD and their families.
Public and private sector progress is significant, but should be coordinated and tracked. In addition, data to track the incidence, prevalence, trajectory and costs of ADRD are limited.
FRAMEWORK AND GUIDING PRINCIPLES
The enactment of NAPA creates an opportunity to focus the Nation's attention on the challenges of ADRD. In consultation with stakeholders both inside and outside of the Federal Government, this National Plan represents the blueprint for achieving the vision of a nation free of ADRD.
Central to and guiding the National Plan are the people most intimately impacted by ADRD -- those who have the disease and their families and other caregivers. Individuals with ADRD and their caregivers receive assistance from both the clinical health care system and long-term care including home and community-based services (HCBS), legal services, and other social services. Both the clinical care and community/support environments need better tools to serve people with ADRD and their unpaid caregivers. Ongoing and future research seeks to identify interventions to assist clinicians, supportive service providers, HCBS providers, persons with ADRD, and caregivers. All of these efforts must occur in the context of improved awareness of the disease and its impacts and the opportunities for improvement. The plan aims to address these key needs. HHS is committed to tracking and coordinating the implementation of NAPA and making improvements aimed at achieving its ambitious vision.
The National Plan is also guided by three principles:
Optimize Existing Resources, and Improve and Coordinate Ongoing Activities
. The first step in developing the National Plan was to set up a federal interagency working group and conduct an inventory of all federal activities involving Alzheimer's disease. In creating the plan, HHS and its partners sought to leverage these resources and activities, improve coordination, and reduce duplication of efforts to better meet the challenges of ADRD. The activities included in the inventory comprise ongoing work and new opportunities created by the Affordable Care Act. The federal working group process continues to improve coordination and awareness throughout the Federal Government and set in motion commitments for further collaboration. Further, this process has allowed for identification of non-AD-specific programs and resources that may be leveraged to advance AD care. [The inventory is available at national-plan-address-alzheimer’s-disease#append3
Support Public-Private Partnerships. The scope of the problem of ADRD is so great that partnerships with a multitude of public and private stakeholders will be essential to making progress. This National Plan begins the partnership process by identifying areas of need and opportunity. The plan relies on the Advisory Council in particular to identify key areas where public-private partnerships can improve outcomes.
Transform the Way We Approach ADRD. The National Plan recognizes that this undertaking that will require large-scale, coordinated efforts across the public and private sectors. With principles 1 and 2 above, as well as the ambitious vision that the Federal Government is committing to through this plan, HHS and its federal partners seek to take the first of many transformative actions that will be needed to address this disease. Through an ongoing dialogue with the Advisory Council, the Federal Government is identifying the most promising areas for progress and marshalling resources from both within and outside the government to act on these opportunities.
GOALS AS BUILDING BLOCKS FOR TRANSFORMATION
Achieving the vision of eliminating the burden of ADRD starts with concrete goals. Below are the five that form the foundation of this National Plan:
- Prevent and Effectively Treat Alzheimer's Disease by 2025.
- Enhance 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.
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