Authorized By National Alzheimer’s Project Act
On January 4, 2011, President Barack Obama signed 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.
- 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 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).
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 AD and their family members, public policy makers, and health and social service providers.
Taking Action to Fight Alzheimer’s Disease
Building on the preliminary work on this plan, on February 7, 2012, the Obama Administration announced a historic $156 million investment to tackle Alzheimer’s disease.
This investment includes:
Immediately increasing Alzheimer’s disease research funding. The National Institutes of Health (NIH) immediately dedicated an additional $50 million from its fiscal year 2012 funding to Alzheimer’s disease research.
Sustaining and growing the Alzheimer’s disease research investment. The President’s fiscal year 2013 budget proposes $80 million in new Alzheimer’s disease research funding. Together, the fiscal years 2012 and 2013 investments would total $130 million in new Alzheimer’s disease research funding over two years.
Supporting people with Alzheimer’s disease and their families and educating the public and providers. The initiative also includes $26 million to support the goals of the National Plan, including:
- Education and outreach to improve the public’s understanding of Alzheimer’s disease
- Outreach to enhance health care providers’ knowledge of the disease
- Expanded support for people with Alzheimer’s disease and caregivers in the community
- Improved data collection and analysis to better understand the impact of Alzheimer’s disease on people with the disease, families and the health and long-term care systems.
- This initiative aims to take immediate action on Alzheimer’s disease without waiting for Congress to act. And, it provides support for ideas being developed through this National Plan.
The National Plan
This is the first National Plan. This plan includes a detailed listing of current federal activities and, as directed by NAPA, initial recommendations for priority actions to expand, eliminate, coordinate or condense programs. The activities outlined in this plan vary in scope and impact and include: (1) immediate actions that the federal government will take; (2) actions toward the goals that can be initiated by the federal government or its public and private partners in the near term; and (3) longer-range goals that will require numerous actions to achieve. This is a National Plan and not a federal plan. It will require the active engagement of public and private sector stakeholders to achieve. In the case of many of the long-range goals, the path forward will be contingent on resources, scientific progress, and focused collaborations across many partners. Over time, HHS will work with the Advisory Council and stakeholders to add additional transformative actions.
A critical part of optimizing resources is ensuring coordination of the implementation of the National Plan with implementation of other HHS-wide plans and strategies, including Multiple Chronic Conditions: A Strategic Framework (2010), the HHS Action Plan to Reduce Racial and Ethnic Health Disparities (2011), National Prevention Strategy (2011), and HHS Strategic Plan (2010-2015). Appendix 2 provides a crosswalk of the Goals and Strategies of this plan with the Goals, Objectives, and Strategies of these related efforts. The alignment of these plan components will facilitate progress across plans as they are each carried out.
Alzheimer’s Disease Defined
Alzheimer’s disease 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 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 this plan, the term “Alzheimer’s disease,” or AD, refers to Alzheimer’s disease and related dementias, consistent with the approach Congress used in NAPA. Related dementias include frontotemporal, Lewy body, mixed, and vascular dementia. It is often difficult to distinguish between Alzheimer’s disease and other dementias 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. Unless otherwise noted, in this plan AD refers to these conditions collectively.
The first symptom of AD is often memory impairment. As the disease progresses, memory continues to decline, and other functions like language skills and decision making become more difficult. Personality and behavior changes may also occur. A person with the disease may no longer recognize family and friends. Eventually, the person who survives with Alzheimer’s disease is completely reliant on others for assistance with even the most basic activities of daily living, such as eating.4, 5
In more than 90 percent of people with Alzheimer’s disease, symptoms do not appear until after age 60, and the incidence of the disease increases with age. The causes of AD 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 AD 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 also develop dementia in their 50s.
AD 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 AD will increase significantly in the next two decades. The number of people age 65 and older in the U.S. is expected to grow from 40 million in 2010 to 72.1 million in 2030. The prevalence of people with AD doubles for every 5-year interval beyond age 65. The significant growth in the population over age 85 that is estimated to occur between 2010 and 2030 (from 5.5 million to 8.7 million) suggests a substantial increase in the number of people with AD.
Alzheimer’s disease places an enormous emotional, physical, and financial stress on individuals who have it and their family members. Informal caregivers, such as family members and friends, provide the majority of care for people with AD in the community. Informal caregivers often do not identify themselves as such; they are simply a wife, daughter, husband, son, or friend helping a person whom they care about. However, the intensive support required for a person with AD can negatively impact the caregiver’s emotional and physical health and well-being. Informal caregivers often report symptoms of depression and anxiety, and have poorer health outcomes than their peers who do not provide such care.7 When the person with AD moves to a nursing home to receive 24-hour care, the financial costs to families are great: an estimated $78,000 per year.8
Caring for people with Alzheimer’s disease also strains the health and long-term care systems. Individuals with Alzheimer’s disease 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 homes residents have Alzheimer’s disease.10 As the number of people with AD 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.
This National Plan is designed to address the major challenges presented by Alzheimer’s disease:
- While research on AD 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 Alzheimer’s care and to improve the training of the health and long-term care workforce, there is room for improvement.
- Family members and other informal caregivers, who take on the responsibility of caring for a loved one with AD, need support. The majority of people with AD 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 AD are widespread and profoundly impact the care provided to and the isolation felt by people with AD 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 AD are limited.