Introduction

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View a short video of NIA Director Dr. Richard J. Hodes introducing the 2012-2013 Alzheimer’s Disease Progress Report:


Alzheimer’s disease is an irreversible, progressive, age-related brain disorder that affects as many as 5 million Americans. 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 cannot be overstated.

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 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 decisionmaking. 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, it is a terminal illness.

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 disorder.

exterior of buildingThe National Institutes of Health (NIH) funds and oversees 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?

This is an exciting time in Alzheimer’s disease research. We have learned a great deal about factors involved in the disease’s onset and progression, fueled in part by recent technology developments that are speeding scientific discovery. Researchers and clinicians involved in cutting-edge studies fully appreciate those who make their work possible—the many people who volunteer for research studies, from those with cognitive impairment and Alzheimer’s disease, along with their caregivers, to presymptomatic and cognitively normal volunteers. We dedicate this report to these invaluable partners in research, as together we seek a future free of this devastating disorder.


A Concerted, Coordinated National Effort

Even as we search for answers, an aging America must contend with the dire financial and societal impacts of age-related dementia. The passage of the National Alzheimer’s Project Act (NAPA) in 2011 focused a national effort to find treatments and support people with dementia and their caregivers. As a result, the National Plan to Address Alzheimer’s Disease, announced in 2012 and updated in 2013, provides a cohesive, national plan to move research forward, provide better clinical care, and improve services for people with the disease and their families.

NIH leads the Federal Alzheimer’s research effort, and its research portfolio is both informed by and reflected in the National Plan. As the world’s leading funder of Alzheimer’s disease research, in addition to its intramural studies in Alzheimer’s and dementia, NIH plays a key role in this inclusive and collaborative effort involving private, public, and academic researchers and clinicians, advocacy groups, and an increasingly engaged American public.

The initiatives, objectives, and advances detailed in the 2012-2013 Alzheimer’s Disease Progress Report seek to help meet the Plan’s research goal—to effectively treat or prevent Alzheimer’s disease by 2025, if not sooner.


Identifying Trends, Opportunities in Alzheimer’s Research

We have much to learn, but the pace of translational research—research that takes laboratory findings into clinical trials—is accelerating. 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.

To enhance coordination and collaboration among Alzheimer’s research funders in the United States and around the world, the National Institute on Aging (NIA), in partnership with the Alzheimer’s Association, developed a public database for tracking Alzheimer’s disease research and funding. Launched in 2012, the International Alzheimer’s Disease Research Portfolio (IADRP) enables funding organizations 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, United Kingdom, Canada, and Australia have provided funding data, and many others use the IADRP database.


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. Every day, families, friends, and caregivers face emotional, physical, and financial stress caring for loved ones who become increasingly debilitated. Families struggle to provide care as a loved one makes multiple transitions among home, nursing home, and hospital settings. The scientific community continues to refine its estimates.

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.

Estimates vary, but studies suggest that as many as 5 million Americans over age 65 may have the disorder. That number is expected to rise during the coming decades as the baby boom generation continues to enter its mid-60s, the age at which the first symptoms of Alzheimer’s commonly appear. Baby boomers—people born between 1946 and 1964—began turning age 65 in 2011 and, according to the U.S. Census Bureau, an estimated 10,000 baby boomers turn 65 every day.

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 that 4.7 million people in the United States age 65 years or older had Alzheimer’s dementia. 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 with dementia in the United States was between $159 billion and $215 billion in 2010, numbers expected to rise dramatically in coming decades with the growing number of older people. 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, which was 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 hours of informal care as 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 over 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 it 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 2012 and the first half of 2013. These highlights were prepared by NIA, the lead institute within NIH for Alzheimer’s research. The findings reflect the wide range of scientific investigations now underway. NIA’s research objective is to identify and explain the basic biological mechanisms and risk factors of Alzheimer’s disease, then apply this knowledge to develop and test new interventions to treat or prevent Alzheimer’s disease.


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