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). The Act defines "Alzheimer's" as Alzheimer's disease and related dementias (AD/ADRD) and requires 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 AD/ADRD.
NAPA offers a historic opportunity to address the many challenges facing people with AD/ADRD 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/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 5.2 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 (amyloid plaques) and tangled bundles of fibers (neurofibrillary tangles). Brain plaques and tangles, in addition to the loss of connections between neurons, are the main pathological features of AD.3 However, other pathologic features occur commonly in the brain of older Americans diagnosed with AD and these are thought to contribute to the burden of the illness due to dementia in the United States.4, 5
In addition to AD, this National Plan addresses Alzheimer's Disease-Related Dementias (ADRD) consistent with the approach Congress used in NAPA. ADRD include frontotemporal degeneration (FTD), Lewy body dementia (LBD), vascular dementias, and mixed dementias--especially Alzheimer's mixed with cerebrovascular disease or Lewy bodies. It is often difficult to distinguish between AD and ADRDs in terms of clinical presentation and diagnosis. Some of the basic neurodegenerative processes have common pathways. People with these forms of dementia and their families and caregivers face similar challenges in finding appropriate and necessary medical care and community-based services. As such, many of the actions described in this plan are designed to address these conditions collectively.
The first symptom of AD, and sometimes ADRD, is often memory impairment. However, in ADRD, poor attention and executive function, behavioral disorders, visual disturbances, 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/ADRD are completely reliant on others for assistance with even the most basic ADLs, such as eating.6, 7
In more than 90% of people with AD/ADRD, symptoms do not appear until after age 60, and the incidence of the disease increases with age. The causes of AD/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 AD/ADRD may differ from person to person. In rare cases, known as early or younger-onset dementia, people develop symptoms 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.
AD/ADRD is a major public health issue and will increasingly affect the health and well-being of the population. Unless the diseases can be effectively treated or prevented, the number of Americans with AD/ADRD will increase significantly in the next two decades. The Bureau of the Census estimates that the number of people age 65 and older in the United States will almost double, to 88 million by 2050. The prevalence of people with AD/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 2050 (from 6.3 million to 19 million) suggests a substantial increase in the number of people with AD/ADRD.
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 AD/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 AD/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 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 home and community-based services (HCBS), 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 $75,000 to $83,000 depending on how unpaid care costs were estimated.8 These national dementia care costs are comparable to, if not greater than, those for heart disease and cancer.9
Caring for people with the disease also strains health and long-term care systems. Individuals with AD/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.10 Similarly, estimates from national data show that nearly seven out of ten residents in assisted living residences have some form of cognitive impairment.11 As the number of people with AD/ADRD grows over the next two decades, these diseases will place a major strain on these care systems as well as on Medicare and Medicaid, the major funders of institutional care and HCBS. Although Medicaid, a program for eligible low income Americans, covers long-term care such as nursing home care and HCBS, Medicare does not.
The National Plan was designed to address the major challenges presented by AD/ADRD:
- While research on AD/ADRD has made steady progress, there are no pharmacological or other interventions to definitively prevent, treat, or cure the diseases.
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 AD/ADRD, also need services and support. The majority of people with AD/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 AD/ADRD are widespread and profoundly impact the care provided to and the isolation felt by people with AD/ADRD and their families and caregivers.
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/ADRD are limited.
Framework and Guiding Principles
The enactment of NAPA provided an opportunity to focus the Nation's attention on the challenges of Alzheimer's disease and related dementias (AD/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 AD/ADRD.
Central to and guiding the National Plan are the people most intimately impacted by AD/ADRD -- those who have the diseases and their families and other caregivers. Individuals with AD/ADRD and their caregivers receive assistance from both the clinical health care system and long-term care including HCBS, legal services, and other social services. Both the clinical care and community/support environments need better tools to serve people with AD/ADRD and their unpaid caregivers. Ongoing and future research seeks to identify interventions to assist clinicians, supportive service providers, HCBS providers, persons living with dementia, and caregivers. All of these efforts must occur in the context of improved awareness of the diseases 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 continues to be 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 AD/ADRD. 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 AD/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/ADRD care.
Support Public-Private Partnerships. The scope of the problem of AD/ADRD is so great that partnerships with a multitude of public and private stakeholders will be essential to making progress. The original National Plan began the partnership process by identifying areas of need and opportunity. The Plan continues to rely on the Advisory Council in particular to identify key areas where public-private partnerships can improve outcomes.
Transform the Way We Approach Alzheimer's Disease and Related Dementias. The National Plan recognizes that this undertaking will require continued, 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 these diseases. Through an ongoing dialogue with the Advisory Council, the Federal Government has and continues to identify 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 AD/ADRD starts with concrete goals. Below are the five that form the foundation of the National Plan:
- Prevent and Effectively Treat Alzheimer's Disease and Related Dementias by 2025.
- Enhance Care Quality and Efficiency.
- Expand Supports for People with Alzheimer's Disease and Related Dementias and their Families.
- Enhance Public Awareness and Engagement.
- Track Progress and Drive Improvement.
This is the 2016 Update to the National Plan. In order to create a more focused and accessible document, agencies have provided narrative descriptions of those activities that were completed in 2015, as well as some which are ongoing and have important updates. This is an attempt to provide a clear report of progress that was made since the last plan update in July 2015. For more information about ongoing or previously completed projects, please consult Appendix 3: Implementation Milestones.
The activities outlined in this National Plan Update vary in scope and impact, and include:
- immediate actions that the Federal Government has taken and will take;
- actions toward the goals that can be initiated by the Federal Government or its public and private partners in the near term; and
- longer-range activities that will require numerous actions by federal and non-federal partners to achieve.
The National Plan was never designed to be a "Federal Plan". The 2016 Plan Update includes a number of activities and projects submitted by non-federal partners. These items have been organized according to the Goals and Strategies in the Plan. Active engagement of public and private sector stakeholders is critical to achieving these national goals. In the case of many of the long-range activities, the path forward will be contingent upon resources, scientific progress, and focused collaborations across many partners. Over time, HHS will work with the Advisory Council and stakeholders to incorporate and update additional transformative actions.
Additionally, in an effort to clearly respond to the annual recommendations made by the non-federal members of the Advisory Council, the 2016 National Plan Update includes an appendix (Appendix 2) in which relevant federal agencies have directly responded to the recommendations made by the Advisory Council. Fulfilling the recommendations is contingent on limitations on legislative authority, resources, and data among the federal agencies and the Federal Government, and this appendix makes clear which recommendations have been addressed and which would require congressional authority or additional resources.