Introduction

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View a short video of NIA Director Dr. Richard J. Hodes introducing the 2013-2014 Alzheimer’s Disease Progress Report:


Alzheimer’s disease is an irreversible, progressive, age-related brain disorder that affects as many as 5 million Americans age 65 and older, in addition to their families. It is the most common form of dementia, a broad term for diseases and conditions that damage brain cells and, over time, impair brain function. Alzheimer’s causes once-healthy neurons—a type of brain cell—to lose their ability to function and communicate with each other. Eventually, the damaged cells die.

Over time, people with Alzheimer’s disease lose their ability to remember, think, learn, and carry out even the simplest of tasks. The physical, emotional, and financial toll exacted by this long process of decline is devastating to those with the disease and their loved ones.

While disease onset may occur decades before the first symptoms, late-onset Alzheimer’s disease is typically diagnosed in people age 65 and older. A rare, inherited, early-onset form of the disease can occur in people in their 30s, 40s, and 50s.

The first symptoms of Alzheimer’s disease typically include memory loss or other cognitive problems, such as trouble with language or decision-making. As cognition declines, people with Alzheimer’s and other forms of dementia sometimes experience disturbing personality and behavior changes. In the final stage of Alzheimer’s dementia, people lose the ability to recognize family and friends and become completely dependent on others for daily care. Ultimately, Alzheimer’s disease causes death.

Dr. Alois Alzheimer first described the disease more than 100 years ago. It was not until the 1970s, however, that researchers first began to understand that dementia—then known as senility—was not a normal part of aging. Since then, scientists have greatly expanded our understanding of this complex disease.

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The National Institutes of Health conducts and funds critical research looking at Alzheimer’s disease causes, diagnosis, treatment, and prevention.

The National Institutes of Health (NIH) funds and conducts a diverse and productive research program into the basic biology of Alzheimer’s disease, the factors that influence its development and progression, and possible treatment and prevention strategies. This research involves a broad array of scientific disciplines and seeks to answer complex questions such as: What causes Alzheimer’s disease? How can it be diagnosed early and accurately? How might it be treated, delayed, or prevented?

The NIH research portfolio is both informed by and reflected in the National Plan to Address Alzheimer’s Disease, a national research and caregiving initiative. NIH is leading the Plan’s goal of finding ways to effectively treat or prevent Alzheimer’s disease by 2025. As the world’s leading funder of Alzheimer’s disease research, NIH plays a key role in this inclusive and collaborative effort involving private, public, and academic researchers along with clinicians, advocacy groups, and the American public.

NIH is pleased to present the 2013-2014 Alzheimer’s Disease Progress Report, which this year more closely coincides with the update of the Plan each spring. This annual report details NIH-supported and -conducted Alzheimer’s disease research initiatives, objectives, and advances during calendar year 2013 and early 2014. New findings and investments are described in this report in terms of how they help meet the research goals specified under the Plan.

Through NIH’s research efforts on Alzheimer’s and related dementias, it is evident that we have reached a new and increasingly collaborative era of research, characterized by open national discussion of research goals and priorities and sharing of research data aimed at accelerating discovery. We dedicate this report to people with Alzheimer’s disease and their families and to the thousands of research volunteers who give their time and more to help find a cure. Working together, we look toward a future where memories and lives are no longer lost to this devastating disease.

National Plan to Mark Third Year

The search for answers about the causes and pathways of this complex disorder entered a new era in 2011 with the passage of the National Alzheimer’s Project Act (NAPA) (PDF, 126K). In setting a research goal, the law renewed and strengthened the national effort to find effective treatments and to support people with dementia and their caregivers. As a result, in 2012 the National Plan to Address Alzheimer’s Disease outlined objectives and set milestones to achieve these goals. Updated annually, most recently in April 2014, the Plan is a collaborative and constantly reevaluated framework that helps focus efforts to provide better clinical care and to improve services for people with the disease and their families.

NIH progress toward achieving the NAPA research milestones is tracked and reported through periodic review of the research funded, results achieved, and new initiatives and programs begun. To learn more about NIH’s investments and leadership in fulfilling the goals of the Plan, see the most recent (April 2014) update of the Plan at: http://aspe.hhs.gov/daltcp/napa/NatlPlan2014.shtml

Identifying Trends, Opportunities in Alzheimer’s Research

Highlights of research activities this past year include building on existing collaborations and beginning new, innovative collaborations. International collaborations and data collection and sharing are resulting in new discoveries about genetic variants that play a role in Alzheimer’s, as well as imaging and blood biomarkers that reveal early Alzheimer’s-related brain changes. Now, that productive approach focuses on a number of new areas. Two initiatives show how NIH is building the partnerships needed to help find effective interventions as soon as possible.

Joining Forces with Industry to Speed Drug Discovery

The Accelerating Medicines Partnership (AMP) is a groundbreaking venture among NIH, 10 biopharmaceutical companies, and several nonprofit organizations to identify and validate the most promising biological targets of disease for new diagnostic and drug development. The ultimate goal is to increase the number of new diagnostics and therapies for patients and to reduce the time and cost of developing them. AMP data and analyses will be made available for use across the biomedical community.

In February 2014, AMP announced pilot projects to last 3 to 5 years in Alzheimer’s disease and two other disease areas. The partners designed a bold, milestone-driven research plan to tackle this challenge for Alzheimer’s disease. AMP partners directed an estimated $129.5 million over 5 years (NIH providing half of the funding) to enhance several National Institute on Aging (NIA)-supported projects aimed at establishing an expanded set of biomarkers that can be embedded in therapeutic trials. The funding will also support development of network models of late-onset Alzheimer’s to identify new biological targets for drug development, including screening of novel compounds or drugs already in use for other conditions that might be repurposed.

Tracking Worldwide Research

To enhance coordination and collaboration among Alzheimer’s research funders in the United States and around the world, NIA, in partnership with the Alzheimer’s Association, has developed a public database for tracking Alzheimer’s disease research and funding. Launched in 2012, the International Alzheimer’s Disease Research Portfolio provides a resource for funding organizations, researchers, and the broader public to assess the changing landscape of Alzheimer’s research, coordinate strategies, leverage resources, avoid duplication, and identify promising areas of growth.

Today, 13 major Alzheimer’s disease research funders in the United States, the United Kingdom, Canada, and Australia have provided funding data, and many others use the database. Additional participation by major funders is invited.

Assessing the Impact of Alzheimer’s Disease

To understand fully the impact of Alzheimer’s disease in America, we must capture its personal and societal costs. Recent major studies have helped to refine estimates of Alzheimer’s disease mortality rates, prevalence, and costs of dementia care.

Estimating Mortality Rates

Alzheimer’s disease is currently ranked as the sixth leading cause of death in the U.S., but the disorder may rank just behind heart disease and cancer as a leading cause of death for older people. With as many as 5 million Americans over age 65 estimated to have Alzheimer’s, researchers at Rush University Medical Center, Chicago, questioned why death certificates in 2010 attributed just 83,000 deaths—or 5 percent of all deaths in older people—to Alzheimer’s (James et al., 2014). From data involving thousands of older volunteers in community studies of Alzheimer’s disease, they estimated that nearly one-third of the deaths in older people reported in 2010—or more than 500,000 deaths—could have been attributed to the disease.

Underreporting of Alzheimer’s on death certificates is a well-known phenomenon. Many people with dementia do not receive a diagnosis of the disease or a particular type of dementia. Dementia-related symptoms, such as problems swallowing or malnutrition, can lead to pneumonia and other fatal conditions. Often, these end-of-life conditions are cited as the primary cause of death, as opposed to the underlying cause: Alzheimer’s disease.

To overcome this reporting bias, the researchers estimated the risk of mortality attributable to Alzheimer’s by analyzing data from their two ongoing aging studies. Over 8 years, they followed 2,566 participants age 65 or older who were deemed cognitively normal when initially entering the studies. During that time, 22 percent of the volunteers eventually developed dementia. About 72 percent of the volunteers with dementia died, compared to 34 percent of those who remained dementia-free. Based on these findings, the researchers concluded that death certificates do not reflect a large number of Alzheimer’s-related deaths.

Determining Prevalence

Preparing for the human, financial, and societal challenges of Alzheimer’s disease and related dementias requires a clear grasp of the numbers involved. We need to know how many people are currently affected by Alzheimer’s and to understand likely future trends in prevalence.

The latest prevalence estimates come from work done by researchers at the Rush Institute for Healthy Aging, Rush University School of Medicine, Chicago, who updated their previous estimates of Alzheimer’s prevalence in the United States for the years 2010 to 2050 (Hebert et al., 2013). They combined estimates of population growth from the 2010 U.S. census with data from the Chicago Health and Aging Project, which included new cases of Alzheimer’s dementia diagnosed between 1997 and 2010, in 10,800 people age 65 years or older.

Based on those numbers and extrapolating from U.S. census data, the researchers estimated the prevalence of Alzheimer’s dementia in the United States in 2010 to be 4.7 million people. They projected that this number would triple by 2050, to 13.8 million, with 7 million of those age 85 years or older.

Costs of Dementia Care

Cost estimates for dementia were refined in 2013 as well. An NIA-supported analysis calculated that the cost of caring for people older than age 70 with dementia in the United States was between $159 billion and $215 billion in 2010. These costs are expected to rise dramatically in the coming decades with the aging of the baby boom generation. The analysis, conducted by researchers at RAND Corporation and the University of Michigan, Ann Arbor (Hurd et al., 2013), found the costs of care to be comparable to, if not greater than, those for heart disease and cancer. The economist-researchers placed dementia among the diseases that are most costly to society.

The study, based on a nationally representative sample from the NIA-supported Health and Retirement Study, is one of the most comprehensive yet to determine health care costs for dementia. The researchers estimated direct health care expenses, including costs of nursing home care, Medicare, and out-of-pocket expenses, to be $109 billion in 2010. They then quantified the costs of informal care provided by the vast network of family members and other unpaid caregivers who support people with dementia. Those costs ranged from $50 billion to $106 billion, depending on how informal care was calculated. The lower number accounts for foregone wages among caregivers, while the higher figure sets a dollar value on informal care that is equivalent to formal paid care.

The researchers also projected skyrocketing costs as the baby boom generation grows older; the U.S. Census Bureau estimates that the population age 65 and older will double to about 72 million during the next 20 years. Rates of dementia increase with age, and unless new ways are found to treat and effectively prevent dementia, national health expenditures for dementia could nearly double by 2040, as the aging population increases and assuming the rate of dementia remains the same.

A Report on Advances and Challenges in Alzheimer’s Research

In this report, we highlight significant NIH-supported research findings and important projects funded in calendar year 2013 and a few significant findings from early 2014. These highlights were prepared by NIA, the lead Institute within NIH for Alzheimer’s research. The findings reflect a wide range of scientific investigations now underway. NIA’s research objectives are to identify and explain the basic biological mechanisms and risk factors for Alzheimer’s, to effectively diagnose the disease in its earliest stages, and to develop and test new interventions to treat and prevent Alzheimer’s disease.

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