The Crisis

5.4 million Americans currently suffer from Alzheimer's disease

USAgainstAlzheimer’s is a community of engaged and enraged individuals who have been touched by Alzheimer’s disease and are united by our frustration at a broken status quo. We are dedicated to mobilizing individuals to demand the urgency, passion and commitment needed by our political, business and civic leaders to achieve the goal of ending Alzheimer’s by 2020. We believe the power of "US" is in the thousands of researchers, millions of families, caregivers, advocates, hundreds of companies and our public officials.

Crisis

What is Alzheimer's disease? 

Alzheimer's disease is an incurable, progressive brain disease that slowly destroys memory and thinking skills and eventually is fatal. It is also the most common cause of dementia. Alzheimer’s symptoms appear gradually and get worse over time.  Symptoms usually start with difficulty remembering new information. In advanced stages, symptoms include confusion, and mood and behavior changes. In advanced Alzheimer’s, the person is unable to care themselves and perform basic life tasks. Care can place great demands of time and cost on families and caregivers

Scientists have not determined the exact cause of Alzheimer's disease. There is no cure for Alzheimer’s. But recent advances in research have provided treatments that can temporarily slow the worsening of symptoms and improve quality of life for some people. Important clinical trials are now underway focused on potential prevention and treatment for Alzheimer's.

Most people develop Alzheimer's when they are over age 65. When Alzheimer’s symptoms develop before age 65, it is referred to as early-onset Alzheimer’s. About 5% of those with Alzheimer’s have early-onset. (Mayo)

Other forms of dementia include Vascular Dementia, Lewy Body Dementia and Frontotemporal Lobe Dementia.

Vascular dementia, the second most common form of dementia, results from injuries to the vessels supplying blood to the brain, often after a stroke or series of strokes. The symptoms of vascular dementia can be similar to those of Alzheimer’s, and both conditions can occur at the same time. Symptoms of vascular dementia can begin suddenly and worsen or improve during one’s lifetime.

Lewy body dementia (LBD) is another common brain disorder in older people. LBD is caused by abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, can lead to problems with thinking, movement, behavior and mood. For example, symptoms may include changes in alertness and attention, hallucinations, tremor, muscle stiffness, sleep problems and memory loss.

Frontotemporal dementia (FTD) is a rare disorder that affects the front (frontal lobes) and the sides (temporal lobes) of the brain. Because these regions often, but not always, shrink, brain imaging can be useful in diagnosis. There is no specific abnormality associated with all cases of FTD. In one type called Pick's disease, there are abnormal microscopic deposits called Pick bodies, but these are not always present.

Who has Alzheimer's? 

Experts suggest that 5.4 million Americans have Alzheimer's, and there are over 15 million unpaid caregivers of Alzheimer's patients in the United States. Women, African Americans and Latinos are twice as likely to develop Alzheimer's. The number of individuals with Alzheimer's is expected to almost triple, approaching 16 million, in the next few decades. Almost half of those over age 85 have some form of dementia. Alzheimer's disease is the third leading cause of death in the United States.

The cost of Alzheimer's 

The financial costs of Alzheimer’s for families and government are enormous.

The average family caring for a relative with Alzheimer’s can expect to spend $215,000 throughout the entire course of the disease ($40,000 for direct costs; $175,000 for indirect costs).

Every year, American taxpayers spend $203 billion on Medicare and Medicaid expenses related to Alzheimer’s. If substantial progress is not made in stopping Alzheimer’s, Medicare and Medicaid spending will reach $1.1 trillion in today’s dollars by 2050.

Medicaid payments alone are more than nine times higher for those with Alzheimer’s compared to those without. The average annual payments per person for health care, services, and Medicare for beneficiaries aged 65 or older with Alzheimer’s is $43,847 which is more than three times greater than Medicare pays for individuals without Alzheimer’s and dementia. The cost difference is attributed to the institutional care that is necessary in the later stages of the disease due to total dependence. More than 50% of nursing home residents have Alzheimer’s disease.

More than $200 billion is spent annually treating Alzheimer’s, which is more than 400 times the amount spent on finding a cure. For every dollar the federal government spends today on the costs of Alzheimer’s care, it invests less than a penny in research to find a cure.

Can we find a cure for Alzheimer's? 

Yes. The research community believes it is possible to prevent or control the disease within ten years with a disciplined strategy that is adequately funded. To succeed, we need a political strategy that ensures that elected officials and lawmakers make fighting Alzheimer’s a national priority and implement a clear plan for a cure.

USAgainstAlzheimer’s believes strongly that through bipartisan support for innovative ideas that cut through government bureaucracy and streamline funding for research, we can end Alzheimer’s as we know it by 2020. 

Alzheimer's-related legislation and policy 

RESEARCH FUNDING

USAgainstAlzheimer's advocates for the doubling of Alzheimer's disease research funding for the National Institutes of Health in FY 2015, with a goal of reaching $2 billion in research funding in the next several years. 

THE HOPE ACT

The Health Outcomes, Planning & Education (HOPE) for Alzheimer's Act (S. 709/H.R. 1507) is bipartisan legislation that would increase the likelihood that patients with Alzheimer's will receive an accurate diagnosis of the disease and will provide Medicare reimbursement for care planning to help the beneficiary receive the best care possible. If enacted into law, the HOPE Act will: 

1. Amend current Medicare law to cover and pay for comprehensive Alzheimer's disease diagnosis and services for a Medicare patient when a physician has detected cognitive impairment and determines that the patient warrants such an evaluation.

2. The services would include: a diagnotic evaluation and referral to a specialist if warranted and care planning services for patients diganosed with Alzheimer's. These services would be offered to the patient and his/her family caregivers and include options on medical and non-medical treatment options, services and supports. 

NATIONAL PLAN TO ADDRESS ALZHEIMER'S DISEASE

In 2012, the Obama Administration released the first-ever National Plan to Address Alzheimer’s that included five goals, including preventing and treating Alzheimer’s disease by 2025. In addition to the plan, the Administration reallocated $50 million in additional funding to support Alzheimer’s research at the National Institutes of Health. In addition to the 2025 goal, the plan established these additional four goals:

  • 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.

What are we up against?

5.4 Million

Experts suggest that 5.4 million Americans have Alzheimer’s

15 Million

There are over 15 million unpaid caregivers of Alzheimer’s patients within the US

3
Times

The number of individuals with Alzheimer’s is expected to almost triple, approaching 13.5 million, in the next few decades.

6th Overall

Alzheimer’s disease is the sixth leading cause of death among Americans.

What are the costs?

More than $200 billion is spent annually treating Alzheimer’s, which is more than 400 times the amount spent on finding a cure.

The average annual payments per person for health care, services, and Medicare for beneficiaries aged 65 or older with Alzheimer’s is $43,847 which is more than three times greater than Medicare pays for individuals without Alzheimer’s and dementia. The reason for this cost difference is that the loss of memory due to the disease makes it more likely the victim will otherwise not be able to care for himself.

Every year, American taxpayers spend $200 billion on Medicare and Medicaid expenses related to Alzheimer’s. If substantial progress is not made in stopping Alzheimer’s, Medicare and Medicaid spending will reach $1.1 trillion in today’s dollars by 2050.

Medicaid payments alone are more than nine times higher for those with Alzheimer’s compared to those without. The cost difference is attributed to the institutional care that is necessary in the later stages of the disease due to total dependence. More than 50% of nursing home residents have Alzheimer’s disease.

For every dollar the federal government spends today on the costs of Alzheimer’s care, it invests less than a penny in research to find a cure.

Without a cure, Alzheimer’s is expected to cost the U.S. $2 trillion by 2020 and have a devastating impact on families who often bear the brunt of the disease

The Financial Strain

In 2011, American taxpayers spent $200 billion caring for those with Alzheimer’s (more than 400 times the amount spent on finding a cure). By 2050, the annual cost of Alzheimer’s (to families, insurers, and the government) is projected to explode to over $1 trillion.

Within ten years, we will spend more than $2 trillion on care for Alzheimer’s victims.

The average family caring for a relative with Alzheimer’s can expect to spend $215,000 throughout the entire course of the disease ($40,000 for direct costs; $175,000 for indirect costs).

There are nearly 15 million Americans who currently provide care for a person with Alzheimer’s.

The Price of Inaction

In August 2011, the challenge of lowering the national debt by $2.5 trillion over the next 10 years caused the United States to come within one day of financial default. No one noted during the debate, however, that over the same 10-year period, the country will be forced to spend another $2 trillion caring for Americans with Alzheimer’s disease.

The cost of this care will negate any gains made from government deficit reduction efforts. For the health of our nation’s economy and seniors, we cannot afford or accept this two-steps-forward, two-steps-back approach.

Is there any current legislation to address Alzheimer’s disease?

A number of pieces of legislation have been introduced. The Spending Reductions Through Innovations in Therapies Agenda – or SPRINT Act – sponsored by Senators Barbara Mikulski (D-MD) and Susan Collins (R-ME) and Representatives Ed Markey (D-MA) and Chris Smith (R-NJ) seeks to discover and develop safe and effective drugs, biologics, devices, and diagnostics for Alzheimer's and other high-cost chronic conditions and to deliver them to patients as quickly as possible. To achieve such breakthroughs that will improve health outcomes and reduce healthcare costs, SPRINT seeks to spur discovery of potential therapies and to expedite review of these therapies by the Food and Drug Administration (FDA).

Can we stop Alzheimer’s by 2020?

Yes. The research community believes it is possible to prevent or control the disease within ten years with a disciplined strategy that is adequately funded. To succeed, we need a political strategy that ensures that elected officials and lawmakers make fighting Alzheimer’s a national priority and implement a clear plan for a cure.

USAgainstAlzheimer’s believes strongly that through bipartisan support for innovative ideas that cut through government bureaucracy and streamline funding for research, we can end Alzheimer’s as we know it by 2020.

The Global Crisis 

Alzheimer's and dementia is a global crisis that also requires a global solution. About 36 million people worldwide are suffering from dementia today, a number that will spike to 115 million by the mid-century point. According to Alzheimer's Disease International, current global costs of caring for the current number of victims exceeds $600 billion annually. This spending is unsustainable, making Alzheimer's a grave threat to the world's health and finances if not stopped.

When the world has faced catastrophic challenges before, nations have marshaled significant resources behind clear goals and objectives to achieve great things. A decade ago, the world committed to an ambitious, aggressive and well-funded effort to prevent and treat HIV/AIDS, Tuberculosis and malaria. Ten years later, that effort has paid significant dividends in terms of lives saved and economic development fostered. Similar commitments both domestic and international have enabled the world to make tremendous strides in addressing other diseases and conditions such as cancers and heart disease. The time has now come to embrace a similar global effort to stop Alzheimer's and dementia, a disease that Professor Peter Piot, head of the United Nation's global AIDS effort, has compared in scope to the AIDS crisis.

 

The following are links to governmental and non-governmental reports on the Alzheimer's crisis.

 

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