Alzheimer's, Dementia & Mental Health
Alzheimer’s Association Gathers Ideas from 43,000 Americans to Help Develop U.S. Plan
Ideas in new report came from 43,000 people touched by the disease; 10 major challenges emerge - see video
Nov. 8, 2011 – A mammoth undertaking to gather insights and views about Alzheimer’s disease by all 70 chapters of the
Alzheimer’s Association has resulted in a report that will become a tool in developing a national plan by the federal government to combat the
The new report, “Alzheimer’s from the Frontlines: Challenges a National Alzheimer’s Plan Must Address,” offers
views from more than 43,000 individuals across the country who participated in the Alzheimer’s Association’s 132 input sessions throughout the
“’Alzheimer’s from the Frontlines’ provides a rare and unique window into the real, unrelenting challenges the
disease forces on families year after year,” according to a news release.
“Advocates from across the nation were essential to the enactment of the National Alzheimer’s Project Act, which creates
a framework for a national plan and coordinates efforts across the federal government,” the news release said. (More about National
Alzheimer's Project Act below news story.)
Helping to create a National Alzheimer’s Plan, participants included people from all 50 states, the District of Columbia
and Puerto Rico, including people living with the disease, caregivers, families, researchers, health care professionals, community leaders and
“Individuals, families and communities are at the center of the escalating Alzheimer’s crisis. Thousands of these
individuals shared their experiences from the frontlines,” said Harry Johns, President and CEO of the Alzheimer’s Association.
“Americans who participated in this process want the nation’s leaders to know Alzheimer’s forever changes lives. In the
end, these individuals want and deserve a transformational plan that urgently addresses their needs.”
Ten key challenges emerged repeatedly throughout the public input process:
1. A lack of public awareness. This includes a lack of knowledge and widespread misunderstanding about
Alzheimer’s; significant stigma and negative experiences that affect personal and professional relationships; and a poor understanding of the
scope of the disease.
2. Insufficient research funding. Because there’s no way to prevent, stop or slow the progression of Alzheimer’s,
many expressed feelings of powerlessness to help themselves or future generations and called for bold action to secure a brighter future.
3. Difficulties with diagnosis. Challenges lead to delayed diagnosis, poor experiences in the diagnostic process,
missed opportunities to immediately connect families with available support and a lack of documentation in a patient’s primary medical record.
4. Poor dementia care. Communication barriers with health care providers and allied health professionals, care
coordination issues with providers, and a lack of knowledgeable personnel equipped to meet the unique needs posed by Alzheimer’s and other
dementias results in poor quality of care.
5. Inadequate treatments. Effectiveness of available drugs varies across the population, but none of the
treatments available today alter the underlying course of this terminal disease.
6. Specific challenges facing diverse communities. Given the disproportionate impact of Alzheimer’s on ethnic and
minority populations, efforts must be implemented to eliminate disparities in these communities.
7. Specific challenges facing those with younger-onset Alzheimer’s. Preconceived notions of Alzheimer’s and age
can delay diagnosis, act as a barrier to participation in research or government programs and make it difficult to find long-term care
appropriate for younger populations.
8. Unprepared caregivers. Caregivers need critical support to provide in-home care but have trouble finding
affordable services and education to care for a loved one, and to alleviate the emotional and physical burden of caregiving.
9. Ill-equipped communities. Many places are unprepared to address the individualized needs of people living with
Alzheimer’s, especially those in rural areas.
10. Mounting costs. The costs to treat and care for Alzheimer’s can be tremendously high and unaffordable over
time and even more difficult to bear when encountering barriers to qualifying for insurance or government support.
“It’s clear that those who participated in these input sessions do not want this opportunity to be a symbolic overture
but instead the beginning of real, transformational action,” said Robert Egge, Vice President for the Alzheimer’s Association.
“We hope those developing the National Alzheimer’s Plan will be inspired and guided by the challenges, experiences and
needs echoed throughout the report.”
The full text of the Alzheimer’s Association’s “Alzheimer’s from the Frontlines: Challenges a National Alzheimer’s
Plan Must Address” report can be viewed at
Currently the sixth leading cause of death, Alzheimer’s is the only cause among the top 10 in the U.S. without a means to
prevent, cure or even slow its progress.
Today an estimated 5.4 million Americans are living with Alzheimer’s disease and by 2050 as many as 16 million Americans
will have the disease. Beyond the sheer numbers of lives touched by the disease, Alzheimer’s will also be a financial albatross to the
nation’s health care system, surpassing $1 trillion in costs annually by mid-century unless the trajectory of the disease is changed.
National Alzheimer’s Project Act (NAPA)
The Alzheimer's Association
About the National Alzheimer's Project Act (NAPA)
What is the National Alzheimer’s Project Act?
The National Alzheimer’s Project Act (Public Law 111-375) requires creation of a national strategic plan to address the rapidly escalating
Alzheimer’s disease crisis and will coordinate Alzheimer’s disease efforts across the federal government.
This national strategic framework will include outcome-driven
objectives, recommendations, implementation steps and accountability in the fight to overcome Alzheimer’s.
What does the law require?
An annually updated national plan submitted to
Congress on how to overcome Alzheimer’s.
Annual recommendations for priority actions to both
improve health outcomes for individuals with Alzheimer’s and lower costs to families and government programs.
The annual evaluation of all federally funded
efforts in Alzheimer’s research, care and services – along with their outcomes.
The creation of an Advisory Council on Alzheimer’s
Research, Care, and Services.
What will the Advisory Council on Research, Care, and Services
The Advisory Council will coordinate federal agencies conducting
Alzheimer’s-related care, services and research. It will also allow participation in the evaluation and strategic planning process by patient
advocates, health care providers, state health departments, Alzheimer’s researchers and health associations.
Participation in the Advisory Council includes the following:
Administration on Aging
Agency of Healthcare Research and Quality
Centers for Disease Control and Prevention
Centers for Medicare and Medicaid Services
Department of Veterans Affairs
Food and Drug Administration
Indian Health Service
National Institutes of Health
National Science Foundation
The Surgeon General
Non-Federal Representation (2 each)
Alzheimer’s Patient Advocates
Health Care Providers
Researchers with Alzheimer’s Experience
State Health Departments
Voluntary Health Associations
Why is NAPA important?
For too many individuals with Alzheimer’s and their
families, the system has failed them, and today we are unnecessarily losing the battle against this devastating disease. The government must
make a meaningful commitment to overcome Alzheimer’s.
Alzheimer’s is the 6th leading cause of
death in the United States and is the only cause of death among the top 10 in America without a way to prevent, cure or even slow its
By making Alzheimer’s a national priority, we have
the potential to create the same success that has been demonstrated in the fights against other diseases. Leadership from the federal
government has helped lower the number of deaths from other major diseases such as HIV/AIDS, influenza and pneumonia, and stroke.
NAPA will allow Congress to assess whether the
nation is meeting the challenges of this disease for families, communities and the economy. Through its annual review process, NAPA will, for
the first time, enable Congress and the American people to answer this simple question: Did we make satisfactory progress this past year in
the fight against Alzheimer’s?
Learn more about NAPA
Take action and share your thoughts on what should go into the National Alzheimer’s Plan
Learn how to become an advocate
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