(NIA) In January 2011, President Barack Obama signed the National Alzheimer’s Project Act (NAPA) (PDF, 126K), which called for an aggressive and coordinated national plan to attack Alzheimer’s disease and related dementias, and to improve care and services. To provide a living framework for this initiative, and as directed under the legislation, the U.S. Department of Health and Human Services (HHS) unveiled the National Plan to Address Alzheimer’s Disease in May 2012. The plan was updated in June 2013 and again in April 2014. The Plan addresses the major challenges presented by Alzheimer’s disease and related dementias and outlines and tracks the various goals and activities—from advancing scientific collaboration to improving patient care—now undertaken with increasing collaboration within the Federal Government and among public and private sectors.
The Plan’s overarching research goal (Goal 1) is to “prevent or effectively treat Alzheimer’s disease by 2025.” While the Plan is a national effort involving public and private stakeholders, the National Institutes of Health (NIH) plays a lead role in identifying, supporting, and conducting the research needed to fulfill the Plan’s research goals. Alzheimer’s is a complex disease, and the challenges are many. NIH leadership, staff, scientists, clinicians, and grantees—as well as the many volunteers who participate in studies and make research possible—are fully committed to a future free of this dread disease.
In recent years, NIH has recognized the public health urgency and emerging scientific opportunities in Alzheimer’s research. In fiscal year (FY) 2012, NIH directed an additional $50 million toward Alzheimer’s research, followed by $40 million more in FY 2013. These funds stepped up research efforts in genetics, drug discovery, and clinical trials.
In FY 2014, the Obama Administration requested and Congress agreed that additional funding should go to the National Institute on Aging (NIA) base budget to address important scientific opportunities to move forward the Alzheimer’s research agenda. With these additional funds, NIA will continue to make every dollar count by establishing priorities, setting goals that are both ambitious and realistic, and identifying the most promising research opportunities for progress through careful planning, coordination, and resource allocation.
NIA/NIH will plan carefully to use the additional funding to support the best peer-reviewed science. While decisions about specific awards with the FY 2014 funding are still being finalized (as of June 2014), it has already been determined that part of the increase will enable such cutting-edge research as:
- Analysis of the DNA sequences generated through the Alzheimer’s Disease Sequencing Project. The mission is to identify new genomic variants that contribute to increased risk for or protection against Alzheimer’s and to provide insight as to why people with known risk factor variants do not develop the disease.
- New research on the use of human adult skin cells and other cell types that can be “reprogrammed” into induced pluripotent stem cells specifically for aging and Alzheimer’s disease. These cells have the capacity to differentiate into any other type of cell, offering enormous potential for modeling Alzheimer’s disease pathways and mechanisms and as platforms for drug screening and testing.
- Research on the function and activity of individual cells in the brain in animal models by turning functions of those cells on and off using light. This technology, known as optogenetics, is being used in animal models of Alzheimer’s disease to provide information that will help us to understand functions of the normal as well as the Alzheimer’s brain.
How Does NIH Determine Alzheimer’s Research Priorities?
NIH receives input from multiple sources when setting research and funding goals and priorities. For Alzheimer’s disease, in addition to scientific workshops, international conferences, and other interactions with the scientific community, these sources include the National Advisory Council on Aging and the Advisory Council on Alzheimer’s Research, Care, and Services, established under the 2011 National Alzheimer’s Project Act.
In support of the objectives outlined in the National Plan to Address Alzheimer’s Disease, NIH has convened two major meetings to help inform the dementia research agenda. In May 2012, NIH hosted the Alzheimer’s Disease Research Summit 2012: Path to Treatment and Prevention. and in mid-2013, convened the Alzheimer’s Disease-Related Dementias: Research Challenges and Opportunities workshop on frontotemporal, Lewy body, vascular, and mixed dementias. These meetings brought together scientists from a variety of disciplines to share insights and develop recommendations. NIH neuroscientists who specialize in Alzheimer’s disease, related dementias, and brain aging played key leadership roles in the meetings, and they continue to assess the research landscape for knowledge gaps, opportunities, and promising new avenues of discovery.
Informed by such meetings, smaller focused workshops, and interaction with scientific experts, NIH may encourage work in areas of particular promise and need by developing and issuing Funding Opportunity Announcements (FOAs). Some FOAs are supported with resources set aside to fund grant applications. Others do not have dedicated funding but are used to send a strong indication of interest to the research community about promising or emerging areas of science. Applications for each FOA are accepted for a set period of time, and FOAs can be reissued or allowed to lapse as goals are met or priorities change.
One example of a recent Alzheimer’s-related FOA is an initiative to support research using optogenetics, a technique that integrates genetics and optics to control the activity of individual cells and study brain changes in animal models of aging and Alzheimer’s disease.
While these special initiatives are critical to moving the field forward, the bulk of NIH funding goes to investigator-initiated proposals—that is, proposals that are not developed in response to a specific FOA. Applications for such funding reflect the creativity and innovation of established and new investigators who seek to build on scientific advances or who offer new ways of thinking about Alzheimer’s disease.
All grant applications are selected for funding through a rigorous peer-review process in which experts in the field carefully review applications for scientific merit, innovation, and likelihood of success. Competition is intense; currently, only about 17 percent of all applications to NIH are funded. However, this means that experts consider the funded research to be highly promising.
The following section lists the strategies and highlights some of NIH’s activities under the National Plan to Address Alzheimer’s Disease during 2013. These actions are not an end in themselves. Rather, measured in specific milestones, they reflect the momentum achieved under the Plan’s comprehensive and cohesive framework. This is happening not only at the Federal level, but also in concert with states and communities and jointly with the private sector. Alzheimer’s has become a national—and global—priority.
Action 1.A.1: Regularly convene an Alzheimer’s disease research summit to update priorities
NIH hosts periodic international conferences to strategize and prioritize the way forward in Alzheimer’s and related dementias research. These meetings are crucial to achieving the Plan’s goal of finding effective ways to treat or prevent Alzheimer’s and related dementias by 2025.
- NIH hosted the first of these conferences, Alzheimer’s Disease Research Summit 2012: Path to Treatment and Prevention, in May 2012. More than 500 leading national and international researchers and clinicians, research funders, advocacy group representatives, and caregivers attended the meeting, and the resulting recommendations are influencing research priorities and directions.
- NIH is now planning the 2015 Alzheimer’s Disease Research Summit to be held in Bethesda, MD, February 9-10, 2015. The approach will be similar to the 2012 Summit, with Alzheimer’s disease researchers, clinicians, industry representatives, advocates, and other stakeholders exploring ways to advance our understanding of Alzheimer’s and related dementias. As science has evolved since the first Summit, the 2015 Summit topics will expand to include vascular contributions to Alzheimer’s. The Summit will also include discussions about minorities and health disparities, and public-private collaborations. Registration details and agendas should be available by fall 2014 at www.nia.nih.gov.
- On February 11, 2015, in conjunction with the 2015 Summit, the U.S. will host one of four planned G7 Dementia Legacy meetings, at the NIH campus in Bethesda, Maryland. These meetings will build on the G8 Dementia Summit held in London in December 2013, with the goal of focusing world attention on dementia. Health ministers from France, Germany, Italy, Japan, Russia, the United Kingdom, and the United States participated in the London Summit and declared a shared goal of identifying a cure or disease-modifying therapy for dementia by 2025. They vowed to collectively increase spending for dementia research, recruit more volunteers for clinical trials and studies, share data from dementia research studies across the G8 countries, and encourage open access to all publicly funded dementia research. The Bethesda meeting is one of several G7 meetings planned for 2014 and 2015.
View a video about the 2012 NIH Alzheimer’s Disease Research Summit: Path to Treatment and Prevention:
Action 1.A.4: Convene a scientific workshop on other dementias in 2013
- The National Institute of Neurological Disorders and Stroke (NINDS), part of NIH, with help from NIA organized the Alzheimer’s Disease-Related Dementias: Research Challenges and Opportunities workshop in May 2013. The meeting focused on Alzheimer’s disease-related dementias such as Lewy body dementia, frontotemporal dementia, and vascular dementia—debilitating conditions that impair memory, thinking, movement, and everyday functioning, primarily in older adults. The recommendations reported to the National Alzheimer’s Project Act Advisory Council will be integrated into the next revision of the National Plan to Address Alzheimer’s Disease. NINDS, together with NIA, is preparing milestones to help monitor progress on implementing the recommendations, primarily by supporting research into frontotemporal dementia, Lewy body dementia, and vascular contributions to dementia. A follow-up meeting is planned for 2016.
- Alzheimer’s disease is quite common in people with Down syndrome, occurring three to five times more often than in the general population. To better understand why, NIH supported the Advancing Treatments for Alzheimer Disease in Individuals with Down Syndrome workshop in April 2013. Co-hosted by NIA, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and NINDS as well as the Down Syndrome Research and Treatment Foundation and Research Down Syndrome, the meeting resulted in research recommendations focused on this special population. These recommendations include developing animal models of Down syndrome and Alzheimer’s to better predict response to therapies, and sharing existing data and development of new data sets that follow study participants with Down syndrome as they age.
View a video about the Alzheimer’s Disease-Related Dementias: Research Challenges and Opportunities workshop, convened in 2013:
Action 1.B.1: Expand research to identify the molecular and cellular mechanisms underlying Alzheimer’s disease and translate this information into potential targets for intervention
Understanding a disease at its most basic level is a necessary first step toward developing interventions to prevent, slow, halt, or reverse disease progression. A more complete understanding of Alzheimer’s at the molecular and genetic levels will help lead to discovery of new and better targets for prevention and treatment. We are making important progress during this exciting time for Alzheimer’s research. We have learned much about factors underlying the disease, and recent developments in technology are speeding up scientific discovery. NIH, which funds and conducts most of the Federal biomedical research on Alzheimer’s, devoted additional funds in the past 3 years to find effective ways to treat and prevent Alzheimer’s disease.
Recent investments in this area include the following.
Federal, industry, and nonprofit Alzheimer’s research organizations formed the Accelerating Medicines Partnership (AMP) to identify and validate the most promising biological targets of disease for new diagnostic and drug development. In February 2014, AMP announced a groundbreaking new venture to pilot projects lasting 3 to 5 years in Alzheimer’s disease and two other disease areas.
- A program project called “Mechanisms of Alzheimer’s” includes a group of projects exploring the role of the lysosomal system, which is involved in the breakdown and recycling of cellular proteins, in Alzheimer’s pathogenesis (2P01AG017617-11A1).
- In another study, investigators are attempting to pinpoint the mechanism through which the ApoE4 protein contributes to the development of Alzheimer’s pathology (R15AG042781).
- Investigators are working to determine which forms of beta-amyloid are responsible for impaired brain function in Alzheimer’s disease (R01AG43522) and to gain a better understanding at the molecular level of why some people with extensive Alzheimer’s pathology never develop cognitive decline (R01AG43511).
- In FY 2013, the office of NIH Director Dr. Francis Collins allocated $40 million in additional funding to Alzheimer’s disease research. Those funds, along with $5 million in NIA funds, will be used to test promising drugs aimed at preventing Alzheimer’s (see Action I.B.5 below) and to identify and validate biological targets for novel therapies. The awards are supporting studies to identify and validate novel therapeutic targets for Alzheimer’s disease. The studies include:
- Pathway Discovery, Validation, and Compound Identification for Alzheimer’s Disease. Researchers at Brigham and Women’s Hospital; Broad Institute; Harvard University, Boston; and Rush University Medical Center, Chicago, are working to discover, characterize, and validate complex molecular networks and candidate genes that influence susceptibility to cognitive decline and Alzheimer’s disease. They hope to identify compounds that normalize the activity of dysfunctional features in molecular networks and to identify drugs for several novel therapeutic targets. To accelerate testing of promising therapies for future clinical trials, the investigators will focus on drugs that have already undergone Phase I testing in humans ((U01AG046152).
- Integrative Biology Approach to Complexity of Alzheimer’s Disease. Investigators led by the Icahn School of Medicine at Mount Sinai, New York City, will apply innovative analytical methods to large-scale molecular, cellular, and clinical data from Alzheimer’s patients to construct biological network models and gain new insights into the complex mechanisms of the disease. The team will also employ a computational approach to test whether any existing drugs currently used for other conditions are capable of modulating Alzheimer’s networks and could be repurposed for Alzheimer’s treatment or prevention (U01AG046170).
- A Systems Approach to Targeting Innate Immunity in Alzheimer’s. University of Florida, Gainesville, researchers will lead a team building on evidence that the innate immune system, which provides immediate defense against infection, and brain inflammation play a significant role in Alzheimer’s disease. To identify and characterize novel therapeutic targets within the innate immune system, this study will use a systems biology approach to integrate genomic, gene expression, and pathological data from Alzheimer’s patients and Alzheimer’s mouse models and analyze them in novel ways. The team will test in animal models of the disease the validity and therapeutic potential of the key factors predicted by the analysis. This research has the potential to speed the discovery and testing of Alzheimer’s disease prevention and treatment therapies by targeting the immune system (U01AG046139).
Action 1.B.2: Expand genetic epidemiologic research to identify risk and protective factors for Alzheimer’s disease
In 2012, NIH Director Dr. Francis Collins asked NIA and the National Human Genome Research Institute (NHGRI), also part of NIH, to work together to analyze the genomes of a large number of older adults to identify Alzheimer’s risk and protective gene variants. The ultimate goal is to find new pathways for treatments and prevention. By December 2013, the Alzheimer’s Disease Sequencing Project, developed jointly by NIA and NHGRI, had sequenced the whole genomes of more than 580 volunteers and made the data accessible to researchers on the NIA Genetics of Alzheimer’s Disease Data Storage Site.
Action 1.B.3: Increase enrollment in clinical trials and other clinical research through community, national, and international outreach
- The Alzheimer’s Prevention Registry, launched in October 2012 by the Banner Alzheimer’s Institute (one of 27 NIA-funded Alzheimer’s research centers), currently has signed up more than 27,000 potential research volunteers. This online, shared recruitment resource enables people across the United States to learn about and consider participating in Alzheimer’s prevention studies. The goal is to enroll 250,000 people by June 2015. Banner is a key partner in the Alzheimer’s Prevention Initiative, an international collaboration funded in part by NIA that will test treatments in people at high genetic risk for Alzheimer’s.
- An estimated 70,000 volunteers with Alzheimer’s, mild cognitive impairment (MCI), or normal cognition are needed for clinical trials and studies; researchers will need to screen at least half a million potential volunteers to reach this goal. To address this need, several HHS agencies collaborated on the Recruiting Older Adults into Research (ROAR) program in 2013. NIA, along with the Administration for Community Living (ACL) and the Centers for Disease Control and Prevention (CDC), will promote research participation through outreach and messaging at the national, State, and local levels. Supported by a 2013 HHS Ignite innovation award, the agencies began working on an action plan to enhance collaboration among NIA-funded Alzheimer’s Disease Centers, the ACL-funded aging services network, and the CDC’s public health network. The goal is to raise awareness, enhance knowledge, and connect aging services and public health staff and older adults regarding easy, actionable opportunities for Alzheimer’s research participation. The agencies will work with existing research registries (including NIH’s ResearchMatch, the Alzheimer’s Association’s TrialMatch, and the Alzheimer’s Prevention Registry) to refine strategies and work with networks and external organizations to implement the action plan as resources permit.
- Since 2012, NIA and ACL, also part of HHS, have co-hosted an annual webinar series to educate professionals and improve coordination of Federal resources between the research and aging services communities. These efforts continue to inspire collaborations at the State, local, and grassroots levels. In 2013, a key focus of the series was addressing enrollment issues related to racial and ethnic minorities. Listen to the webinars and view related materials.
- In October 2013, the Office of the NIH Director and NIA funded new clinical trials testing promising drugs aimed at preventing Alzheimer’s (see 1.B.1 above). The clinical trials include:
- The Dominantly Inherited Alzheimer Network Trials Unit (DIAN-TU) Trial. Washington University, St. Louis, researchers and investigators at multiple sites are testing new anti-amyloid-beta drug treatments in volunteers who have an inherited form of Alzheimer’s disease. While early-onset Alzheimer’s is rare and occurs in people as early as their 30s, the knowledge gained from this study will be highly relevant to both early- and late-onset forms of the disease. The 4-year trial will test anti-amyloid-beta drugs (gantenerumab and solanezumab) in people free of symptoms or in the earliest stages of the disease. This trial is also supported by the Alzheimer’s Association and four companies: Roche, Lilly, Avid Radiopharmaceuticals, and CogState (U01AG042791).
- The Alzheimer’s Prevention Initiative APOE4 Trial. Banner Alzheimer’s Institute, Phoenix, and co-investigators will conduct a 5-year prevention trial testing an anti-amyloid drug in cognitively normal older volunteers who are at increased risk of developing late-onset Alzheimer’s because they inherited two copies of the APOE4 allele, the best known genetic risk factor for late-onset disease. The treatment has not yet been selected. The study will test the role of amyloid in the development of Alzheimer’s and, through imaging and biomarker techniques, will help identify faster ways to evaluate other promising prevention therapies. It is anticipated that the study will also be supported with private funding (UF1AG046150).
- Allopregnanolone Regenerative Therapeutic for MCI/Alzheimer’s: Dose Finding Phase 1. University of Southern California, Los Angeles, investigators are conducting a 12-week, early-phase clinical trial to evaluate the safety and tolerability of increasing doses of allopregnanolone, a natural brain steroid, in treating MCI and Alzheimer’s disease. The drug has been shown to promote the generation of new brain cells, reduce amyloid levels, and restore cognitive function in preclinical animal testing (UF1AG046148).
- Stimulating the Innate Immune System to Prevent Alzheimer’s. Sanofi Aventis, Cambridge, MA, and Baylor College of Medicine, Houston, will conduct a 3-year, Phase II, proof-of-concept study to evaluate the use of recombinant sargramostim, a drug that stimulates the innate immune system. They will determine whether the drug clears abnormal deposits of amyloid and how this impacts cognition. This 24-week, randomized, double-blinded, placebo-controlled study will recruit patients with MCI, a condition that often leads to Alzheimer’s. Sanofi Aventis US, Inc., the company that markets a brand-name form of the drug in the United States, is the award recipient and sponsor of this trial (UF1AG046143).
- The Alzheimer’s Disease Cooperative Study (ADCS) is an innovative research network for Alzheimer’s disease clinical studies. In January 2013, NIA renewed its support of the ADCS with an $11 million award, which could total as much as $55 million over the 5 years of the project. The consortium, coordinated by the University of California, San Diego, is made up of more than 70 research sites in the United States and Canada, with a focus on advancing studies of interventions that might not otherwise be tested by industry. This award has made four new trials possible. Read more about the ADCS and these trials.
- NIH-supported discoveries that Alzheimer’s pathology is present in the brain many years before symptoms appear has opened the door for early intervention and raised hopes that primary prevention of the disease may be possible. New projects are testing a number of approaches:
- Drug therapies to prevent Alzheimer’s. The NIH-supported Alzheimer’s Prevention Initiative (API), established in 2012, is evaluating promising experimental treatments in people who, based on their genetic background and age, are at the highest imminent risk of Alzheimer’s. This study, in Medellin, Colombia, includes members of the world’s largest extended family of early-onset Alzheimer’s mutation carriers. The API aims to help establish the biological measurements and regulatory pathways needed to evaluate promising prevention therapies as quickly as possible. The first API trial is a 5-year study of crenezumab to see if it can prevent cognitive decline. The drug is designed to bind to and possibly clear abnormal amounts of amyloid protein in the brains of people with Alzheimer’s (RF1AG041705). In addition, academic researchers are collaborating with NIA intramural investigators on the preclinical development of a compound called posiphen, which prevents synthesis of the amyloid precursor protein, for use in patients with Alzheimer’s and Down syndrome (R21AG046200).
- Developing new drugs. Through the trans-NIH NIH Blueprint Neurotherapeutics Program, investigators working with small-molecule compounds targeted at neurological diseases, including Alzheimer’s, can gain access to a robust virtual drug development network for neurotherapeutic drugs. Participants receive both funding and no-cost access to contracted drug development services not typically available to the academic research community. NIA-supported investigators are also developing new drugs to treat abnormal tau, a pathological hallmark of Alzheimer’s disease, and other forms of dementia (R01AG044332). Other investigators are identifying novel small molecules that target toxic APOE ε4 in the brain (U01AGA43394), as well as agents that target tau (R01AG44332).
Action 1.B.6: Continue clinical trials on the most promising lifestyle interventions
NIH is studying whether lifestyle interventions, such as diet, exercise, and cognitive enrichment, may be preventive interventions for cognitive decline and Alzheimer’s. Results of observational studies and short-term clinical trials suggest that being physically and mentally active and eating plenty of nutrient-rich foods might have a protective effect on cognition. Those findings are under active investigation in more definitive interventional studies. In one study, investigators are working to determine whether aerobic exercise can modify Alzheimer’s pathology in individuals with preclinical disease (R01AG043962). In another study, the Alzheimer’s Disease Multiple Intervention Trial (ADMIT), researchers are comparing expert primary care with primary care plus a home-based occupational therapy intervention to improve functioning in older adults with Alzheimer’s (R01AG034946).
- Since 2004, NIA has led the Alzheimer’s Disease Neuroimaging Initiative (ADNI), a groundbreaking study that is defining subtle changes that may take place in the brains of older people many years before overt Alzheimer’s symptoms appear. ADNI is the largest public-private partnership to date in Alzheimer’s disease research. Now in its third phase, ADNI 2, the project is identifying and standardizing imaging and fluid biomarkers in brain, blood, and spinal fluids that make it possible to detect the onset of Alzheimer’s disease, track its progression, and evaluate the effectiveness of promising therapies.
- Early detection of disease pathology and even early clinical diagnosis provide a window in which effective intervention may eventually be possible by:
- Developing new diagnostic guidelines for Alzheimer’s disease. A team led by NIA and the Alzheimer’s Association recently devised new guidelines for the diagnosis of preclinical through dementia stages of Alzheimer’s disease. Formulation of initial criteria for this previously undefined preclinical phase represents an important advance; however, the new guidelines have not yet been validated. One project (R01AG041851) will support validation testing of some aspects of the new preclinical criteria.
- Enhancing diagnostic and prognostic techniques. Researchers have posited that in early Alzheimer’s disease, changes to the brain occur in a sequential and predictable manner. First, approximately 15 years prior to diagnosis, amyloid biomarkers become abnormal, followed by the appearance of biomarkers of neuronal injury. At this point, a clinical diagnosis of MCI becomes possible. In a continuation of this work, investigators are seeking to confirm, validate, and if necessary revise and extend this model. If validated, it will enable physicians to counsel patients more effectively about the implications of abnormal Alzheimer’s biomarkers, and it will aid in design of therapeutic clinical trials in preclinical Alzheimer’s (R01AG011378). In another study, investigators are determining which of the current MCI diagnostic approaches best predicts dementia development (R01AG016495).
- Imaging for presymptomatic and earliest signs. Several projects intensify the study of neuroimaging for defining Alzheimer’s disease. One will identify genetic and imaging biomarkers for presymptomatic Alzheimer’s (R01AG040770), while another will develop and optimize cognitive and imaging biomarkers to track progression through the early symptomatic stages of the disease (R01AG027435). Another study will look at changes in the brain’s white matter, areas of the brain that contain large bundles of axons that connect neurons in one region of the brain with neurons in other regions. White matter changes may appear on brain scans earlier than changes in gray matter, regions where neurons and dendrites are found, and may serve as a biomarker for presymptomatic Alzheimer’s (R01AG031892). Finally, investigators are also exploring development of a simple screening test for the disease that enables imaging of amyloid plaques in the retina (R01AG44897).
- Finding blood-based biomarkers. Investigators are also developing blood-based screening tools for Alzheimer’s. Intramural scientists at NIA have established that levels of clusterin, a protein that regulates amyloid production and clearance, are elevated in the blood of individuals with Alzheimer’s disease, and that clusterin levels correlate with disease severity. One group of NIA-funded researchers is developing a blood-based screening tool incorporating multiple proteins (R01AG039389), while another group is creating a tool based on measurement of amyloid-beta in blood erythrocytes (R0AG1007637). A third is developing a test that quantifies certain microRNAs, small molecules involved in DNA transcription and expression, to predict which patients with MCI will go on to develop full-blown Alzheimer’s disease (R01AG044860).
Action 1.D.1: Inventory Alzheimer’s disease research investments
- The International Alzheimer’s Disease Research Portfolio is a publicly available database that captures the full spectrum of Alzheimer’s disease research investments and resources, both in the United States and internationally. Developed by NIA with the Alzheimer’s Association, the database enables public and private funders of Alzheimer’s research to coordinate research planning, leverage resources, avoid duplication of funding efforts, and identify new opportunities in 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. In 2013, NIH decided to expand the database to include research investments in dementias related to Alzheimer’s disease, and work is underway to incorporate these into the database.
- In April 2013, NIA convened the Enabling Partnerships for Alzheimer’s Disease Drug Development meeting to promote collaborations aimed at an integrated, seamless approach to Alzheimer’s research and drug development. More than 60 leaders from academia, industry, NIH, the U.S. Food and Drug Administration, foundations, and advocacy groups explored ways to adopt and adapt new models of data-sharing and translational science.
- The New York Academy of Sciences and the Global CEO Initiative, in collaboration with NIA, held the Alzheimer’s Disease Summit: The Path to 2025 meeting in November 2013. Leading industry, academic, and government stakeholders discussed ways to coordinate efforts to build research resources, reengineer current drug development and evaluation systems, and identify innovative technologies and financing models.
- The Alzheimer’s Association and NIA co-hosted a funders meeting at the Alzheimer’s Association International Conferences in July 2012 and July 2013; a funders meeting is also scheduled for July 2014. The Alzheimer’s Association and NIA also convene representatives of several funding organizations around the world for regular teleconferences. NIA is exploring collaboration with the European Union Joint Programming Initiative on Neurodegenerative Diseases Research, and the HHS Office of Global Affairs is exploring opportunities to collaborate on international initiatives focused on Alzheimer’s disease.
- NIA operates the Alzheimer’s Disease Education and Referral Center (ADEAR), the primary Federal Government resource for information about Alzheimer’s disease, research, and caregiving. The ADEAR Center educates the public about the latest research findings and provides evidence-based information at www.nia.nih.gov/alzheimers and in print. Information about Alzheimer’s and other dementias, participation in clinical trials, and caregiving is available for people with the disease, their families and caregivers, health care and social service providers, and the public. ADEAR services include:
- Information specialists are available to answer questions and provide referrals via a toll-free number (1-800-438-4380) and email at firstname.lastname@example.org.
- ADEAR tweets information about Alzheimer’s daily and covers such topics as caregiving tips and resources, the latest research findings, new clinical trials, and basic information about diagnosis and treatment. Follow ADEAR Twitter @Alzheimers_NIH.
- Caregiving resources have been greatly expanded to include tip sheets (many now available as eBooks) and newly translated online Spanish resources.
- The ADEAR Center distributes e-mail news alerts, including the online Connections newsletter and a monthly update on clinical trials and studies that are recruiting participants. Subscribers can sign up at www.nia.nih.gov/contact/subscribe.
- In 2012-2013, NIA helped update The Healthy Brain Initiative: A National Public Health Road Map to Maintaining Cognitive Health. Led by the CDC and the Alzheimer’s Association, it outlines how State and local public health agencies and their partners can promote cognitive functioning, address cognitive impairment in their communities, and help meet the needs of care partners.
- The Affordable Care Act established coverage of the Medicare Annual Wellness Visit, which now includes “detection of any cognitive impairment.” If cognitive impairment is detected, health care providers consider potential causes of cognitive impairment and determine the need for a comprehensive diagnostic evaluation for Alzheimer’s disease.
- In 2013, the NIA-created Instruments to Detect Cognitive Impairment in Older Adults database became available for clinicians and researchers needing cognitive impairment assessment tools. It provides 116 published instruments that are searchable by specific criteria, such as time to administer and language. Researchers can also identify instruments that have been evaluated in specific populations (for example, African-American and Hispanic) or for specific diagnoses. References, including the original article about each instrument, are cited and linked for easy access.
- NIH supports research on new and effective ways to support Alzheimer’s caregivers:
- Employing new technologies. Investigators are developing and evaluating Telehealth Technology for Distance Counseling and online training modules for national teledelivery of the New York University Caregiver Intervention model, an evidence-based psychosocial intervention for families of people with Alzheimer’s disease. The model has been shown to reduce depression in caregivers and delay nursing home placement by 1.5 years, on average, but is not widely available, particularly in rural America (R44AG043204).
- Offering practical help. Investigators are developing a new tool to teach caregivers of people with dementia about preserving functional ability during dressing (R43AG039172). Others are developing a Web-based training module that covers a broad range of topics for Alzheimer’s caregivers (R44AG032159). Because this module will be available online and via mobile devices and does not require a professional facilitator, it could reach a large segment of the caregiver population that has not previously had access to high-quality training materials.
- Extending REACH. REACH II (Resources for Enhancing Alzheimer’s Caregiver Health II), an NIH-funded study, led to development of the first intensive caregiver support intervention to be proven effective, through rigorous testing in an ethnically diverse population. The REACH intervention is currently being employed more broadly through the U.S. Department of Veterans Affairs (VA), with participating centers in 15 states. The VA is testing the intervention with caregivers of people with other chronic conditions as well. ACL is also implementing the REACH intervention at centers in Georgia, North Carolina, and Florida, and the first international adaptation of the REACH intervention recently began at the University of Hong Kong. Investigators have also begun to explore possible differential effects of the REACH II intervention among diverse demographic subgroups (R03AG46493).
NIH supports a number of resources and avenues of research directed at ways to support those who live with cognitive decline and dementia—whether as a patient or as a caregiver. These resources are freely accessible online and increasingly available in mobile device formats.
- NIA offers a variety of evidence-based resources to assist families in the day-to-day care of and long-range planning for loved ones with Alzheimer’s disease. Topics include caregiving and legal and financial planning, for example.
- Many materials focus on the needs of our diverse population. For example, NIA resources explain important issues about memory loss, Alzheimer’s disease, and other dementias. NIA’s Spanish-language Web site also offers online information about Alzheimer’s disease, research, and caregiving , and bilingual ADEAR Center information specialists can answer questions about dementia (see above). In 2013, Spanish-language resources were expanded to include online publications about Alzheimer’s disease and memory loss: Entendiendo la enfermedad de Alzheimer: lo que usted necesita saber and Entendiendo la pérdia de memoria: qué puede hacer cuando usted tiene problemas para recorder.
- New NIH-funded research is focusing on technologies that enable older people to live independently at home for as long as possible. For example, researchers at the Oregon Health & Science University, Portland, are using remote sensors and computer technologies to unobtrusively monitor health changes due to chronic disease and aging—data that might lead to timely interventions to prevent avoidable health declines or loss of independence. In 2013, they began a study to test whether sensors tracking an older volunteer’s patterns of mobility, sleep, medication use, weight change, and social engagement might indicate changes in abilities related to independent living. Such information could help inform decisionmaking about the need for and timing of increased levels of care (R01AG042191).
When Congress created NIA at NIH in 1974, it mandated that the new Institute communicate evidence-based information about aging and aging research to the public, health practitioners, and the research community. Subsequently, the Institute was directed specifically to provide information about Alzheimer’s. NIA fulfills these important missions by communicating directly with various audiences via a robust, user-friendly Web site, along with targeted outreach activities and partnerships. Specific initiatives in Alzheimer’s disease include the following.
- NIA directs the Federal Government’s leading information center on Alzheimer’s, the Alzheimer’s Disease Education and Referral (ADEAR) Center. Created in 1990, ADEAR compiles, archives, and disseminates information concerning Alzheimer’s disease and related dementias for health care professionals, people with Alzheimer’s disease and their families, and the public. In 2013, the ADEAR Web site had nearly a million visits. NIA continues to refine and update the nearly two dozen, evidence-based publications on Alzheimer’s and related dementias topic that are downloadable for free at the site. Many publications are now available in eBook formats.
- NIA and the National Institute of Neurological Disorders and Stroke (NINDS collaborate on researching and informing the public about Alzheimer’s-related dementias. In 2013, NIA and NINDS produced new publications on Alzheimer’s-related dementias: The Dementias: Hope Through Research and Lewy Body Dementia: Information for Patients, Families, and Professionals.
- As part of the National Plan, in 2012 HHS established a new Web site, www.alzheimers.gov, to provide Alzheimer’s families an easier route to the wealth of Federal information and resources on caregiving. NIA is helping to populate the site with resources and refers inquirers seeking caregiving information to the site.
- To help inform the public interested in the scale and scope of Alzheimer’s research worldwide, the NIA in partnership with the Alzheimer’s Association developed a public database called the International Alzheimer’s Disease Research Portfolio. This interactive resource captures the changing landscape of Alzheimer’s research and identifies promising areas of growth.
National Institute on Aging