Congress recently engaged in a legislative experiment: seeing whether it could put Alzheimer’s disease (AD) and other conditions that cause dementia on the run through sheer force of political will.
The National Alzheimer’s Project Act of 2011 (NAPA) requires the U.S. Department of Health and Human Services (HHS) to fight the condition together with a new Advisory Council on Alzheimer’s Research, Care and Services.
HHS and the advisory council are supposed to start a National Alzheimer’s Project and to develop a National Plan for coordinating research, accelerating the development of treatments, and improving support for people with dementia and their families.
Here is an excerpt from the draft. In this section, the council talks about the challenges that will face the National Alzheimer’s Project, guiding principles, and five concrete goals that could form the foundation of the National Plan. Comments on this section and other parts of the draft are due March 30.
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 has 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 constant need to provide care can take a toll, with about one-third of caregivers reporting symptoms of depression.
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.
Framework and Guiding Principles
The enactment of NAPA creates an opportunity to focus the Nation’s attention on the challenges of AD. In consultation with stakeholders both inside and outside of the federal government, this National Plan represents the initial blueprint for achieving the vision of a Nation free of AD.
Central to and guiding the National Plan are the people most intimately impacted by Alzheimer’s Disease — those who have the disease and their families and other caregivers. Individuals with AD and their caregivers receive assistance from both the clinical healthcare system and support systems such as long-term care, home care, legal services, and other social services. Both the clinical care and support environments need better tools to serve people with Alzheimer’s disease and their caregivers. Ongoing and future research seeks to identify interventions to assist clinicians, persons with AD, 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 National 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 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 affecting AD. This inventory will be included as an appendix to the final plan. 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 Alzheimer’s disease. The activities included in the inventory comprise ongoing work and new opportunities created by the Affordable Care Act. The federal working group process has already led to improved 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.
Support public-private partnerships. The scope of the problem of Alzheimer’s disease is so great that partnerships with a multitude of stakeholders will be essential to making progress. This National Plan begins the partnership process by identifying areas of need and opportunity. The plan looks to the Advisory Council in particular to identify key areas where public-private partnerships can improve outcomes.
Transform the way we approach Alzheimer’s disease. The National Plan represents a first step in an 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 National 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 will identify the most promising areas for progress and marshal 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 Alzheimer’s disease 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.
- Optimize 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.