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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 mind-destroying disease.

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 country.


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“’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 many others.

“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 do?

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:

Federal Representation:

§    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 Caregivers

§    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 progression.

§    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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