Alzheimer’s disease and related dementias change the way people remember, think, and act. These diseases can be devastating for the individuals who have them and for their families and other caregivers. Taking action to address the many detrimental challenges of Alzheimer’s and related dementias is a U.S. federal government priority.
This is a lengthy article, but there are many important points to consider, as well as suggestions for areas in which you could help in the fight against Alzheimer’s and other dementias.
The National Alzheimer’s Project Act (NAPA), signed into law in January 2011, called for a coordinated national plan to accelerate research and improve care and services for people living with Alzheimer’s and related dementias, and their families.
As the economic costs of care continue to climb — along with costs associated with loss of independence and quality of life — we are more driven than ever to discover, develop, disseminate, and implement solutions that will improve the lives of those with dementia, their caregivers, and their communities.
– Francis S. Collins, M.D., Ph.D., former director, National Institutes of Health
With guidance from experts and public input, the first National Plan to Address Alzheimer’s Disease was released in 2012 and is updated annually. The National Plan lays out six ambitious goals to prevent future cases of Alzheimer’s and related dementias and to better meet the needs of individuals and families currently facing these diseases:
- Prevent and effectively treat Alzheimer’s and related dementias by 2025
- Enhance care quality and efficiency
- Expand supports for people with Alzheimer’s and related dementias and their families
- Enhance public awareness and engagement
- Improve data to track progress
- Accelerate action to promote healthy aging and reduce risk factors for Alzheimer’s and related dementias
Facts & Figures: Alzheimer’s Disease and Related Dementias
- More than 6 million Americans age 65 and older are currently living with Alzheimer’s disease, and it is predicted that number will increase to more than 13 million people by 2060.
- Although Alzheimer’s disease is the most common type of dementia diagnosis, many people have other related forms of dementia such as vascular dementia, Lewy body dementia, and frontotemporal disorders, either alone or, more commonly, mixed with changes attributable to Alzheimer’s.
- Alzheimer’s disease is the seventh leading cause of death for Americans. In 2020, it accounted for an estimated 134,242 deaths.
- An analysis funded by the National Institute on Aging (NIA) found that total social costs from health care and caregiving spending for a person with probable dementia in the last five years of life was an estimated $287,000, compared with $175,000 for an individual with heart disease and $173,000 for someone with cancer.
Sources: NIH Professional Judgment Budget for Alzheimer’s Disease and Related Dementias Research, Fiscal Year 2024 (PDF, 11M), CDC Leading Causes of Death, and The Burden of Health Care Costs in the Last 5 Years of Life.
A Collaborative Effort Across the Federal Government
Agencies across the federal government support efforts to carry out the National Plan. Representatives from the Department of Health and Human Services (HHS), the Department of Veterans Affairs (VA), the National Science Foundation, and the Department of Defense work to coordinate research, care, and services across agencies, accelerate the development of treatments, improve early diagnosis and coordination of care, reduce ethnic and racial disparities in rates and burden of dementia, and coordinate with international efforts to fight these diseases.
Within HHS, these agencies support implementation of the National Plan: the Office of the Assistant Secretary for Planning and Evaluation, Office of the Assistant Secretary for Health, National Institutes of Health, Centers for Medicare & Medicaid Services, Centers for Disease Control and Prevention, Administration for Community Living, Health Resources and Services Administration, Agency for Healthcare Research and Quality, Substance Abuse and Mental Health Services Administration, Food and Drug Administration, Indian Health Service, and Administration for Children and Families. Learn more below about some of these agency efforts.
ASPE: Policy Research for People With Dementia and Caregivers
The Office of the Assistant Secretary for Planning and Evaluation (ASPE) serves as the principal advisor on developing policy on health, disability, human services, data, and science to the secretary of HHS. ASPE also provides economic policy analysis; acts as a leader of special initiatives; and coordinates interagency collaborations, committees, and advisory groups.
ASPE coordinates and oversees the National Plan and updates it annually to reflect the most recent recommendations, initiatives, and achievements. The year 2022 marks the 10th anniversary of the National Plan. Over the past decade, the National Plan has provided a framework to support progress in the research, diagnosis, and treatment of Alzheimer’s and related dementias. It continues to promote new kinds of support and outreach for people living with Alzheimer’s and related dementias, and their families and caregivers.
NIH: Research To Treat and Prevent Dementia
The National Institutes of Health (NIH) is made up of Institutes, Centers, and Offices that conduct and fund research into all aspects of human health. NIA leads NIH’s efforts in Alzheimer’s and related dementias research, aimed at finding ways to prevent and effectively treat these diseases. NIA collaborates closely with the National Institute of Neurological Disorders and Stroke (NINDS), which manages a research portfolio targeting Alzheimer’s-related dementias. NIA and NINDS work with Institutes, Centers, and Offices across NIH to fund related projects. NIH also collaborates with the VA on a variety of related initiatives, including leveraging health data from millions of older veterans to contribute to dementia research.
NIH-funded research is conducted both in NIH laboratories and at institutions and small businesses around the country. A cornerstone of NIH’s dementia research is a group of more than 30 Alzheimer’s Disease Research Centers across the United States. Working collaboratively, scientists at these centers conduct research to advance discoveries, provide resources for the broader research community, and translate advances into improved diagnosis, treatment, and care. NIA also supports several large infrastructure programs focused on drug development, scientific collaboration, data sharing, and clinical research.
Additionally, NIA and NINDS established the NIH intramural research program, Center for Alzheimer’s and Related Dementias (CARD), in 2020. In 2022, CARD scientists moved to the newly built and dedicated Roy Blunt Center for Alzheimer’s and Related Dementias Research building on the NIH campus in Bethesda, Maryland. CARD brings together scientists from multiple NIH Institutes and Centers, as well as visiting researchers from around the globe, to accelerate the translation of scientific findings into real-world applications. CARD is designed to complement efforts of the extramural community by leveraging the unique resources available on the NIH campus, including the NIH Clinical Center, to address scientific gaps and to support research that will lead to the development of improved treatments and preventions for these diseases.
Learn more about the research activities and progress supported by NIH.
Another NIA-supported service is the Alzheimer’s and related Dementias Education and Referral Center (ADEAR), which provides information for people with dementia, their families, and health professionals. Through the ADEAR Center, NIA offers free publications online and in print, referrals to support services and research centers, clinical trials information, and customized responses to public inquiries about dementia. To speak to a specialist, contact ADEAR via email or phone at 800-438-4380.
CDC: Public Health Efforts Regarding Dementia
The Centers for Disease Control and Prevention (CDC) is the nation’s public health agency. CDC’s efforts regarding Alzheimer’s and related dementias focus on integrating brain health into public health and creating a national public health dementia infrastructure to increase early detection and diagnosis, reduce risk, reduce avoidable hospitalizations, and support dementia caregiving. Through its Alzheimer’s Disease Program, CDC leads several national initiatives that apply evidence-based, scientific information and data to educate and inform the public and assist in translating science into public health practice.
For example, the Healthy Brain Initiative is designed to improve understanding of brain health as a central part of public health practice. Through the initiative, CDC creates and supports partnerships, collects and reports data, increases awareness of brain health, and supports populations with a high burden of Alzheimer’s and related dementias. In addition, the Healthy Brain Initiative Road Map Series provides actionable steps for state and local public health agencies and tribal organizations to promote brain health, early detection and management of Alzheimer’s and related dementias, and address the needs of caregivers. CDC is continuing to further implement the Healthy Brain Initiative, including assisting with monitoring the public health burden of cognitive impairment and also caregiving.
CDC also supports Public Health Centers of Excellence and Public Health Programs as part of the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (PL 115-406). The Public Health Centers of Excellence serve as topic-specific national experts and collaborate with CDC and other national and local partners to identify, translate, and disseminate promising research findings and evidence-informed best practices for dementia risk reduction, early detection of dementia, and dementia caregiving. The Public Health Programs are helping to build a strong public health infrastructure by utilizing a comprehensive public health approach to Alzheimer’s and related dementias by changing systems, environments, and policies to promote risk reduction, improve early diagnosis, prevent and manage comorbidities, and avoid hospitalizations.
ACL: Support for People With Dementia, Their Families, and Communities
The Administration for Community Living (ACL) provides funding for states and home- and community-based service providers to develop and implement person-centered services and supports. ACL partners with public and private entities to identify and address the unique needs of people living with dementia and their caregivers.
The Administration on Aging (AoA), within ACL, leads the agency’s initiatives to support people living with Alzheimer’s disease and related dementias and their caregivers. The AoA provides funding to states and community-based organizations through the Alzheimer’s Disease Programs Initiative (ADPI). In 2020, the AoA introduced the Dementia Capability in Indian Country grant program to provide resources for the development and delivery of culturally competent dementia education and evidence-based interventions to Native American populations.
A broad range of public and private entities participate in ACL’s ADPI programs. Grantees include state and county governments, tribal entities, Area Agencies on Aging, Councils on Aging, hospital systems, hospice and palliative care agencies, local independent Alzheimer’s and related dementias home- and community-based service providers, and disability service providers.
ACL also funds the National Alzheimer’s and Dementia Resource Center (NADRC). The NADRC identifies topical areas from which the dementia community, including home- and community-based service providers, people living with dementia, and caregivers, could benefit from additional resources. Each year they convene a series of 10 dementia-specific webinars and develop resources related to identification, delivery, and evaluation of dementia-specific, evidence-based interventions in communities and other tools and resources. The resource center website is also the hub where the tools and program materials developed by their grantees are made available for use by the general public. Another key role the NADRC plays is the provision of targeted technical assistance to states and community organizations participating in its ADPI grant program.
In addition to supporting state, community, and tribal grants, ACL supports the operation of the National Alzheimer’s 24/7 Call Center through the Alzheimer’s Association, a not-for-profit organization. The call center is open year-round and provides expert advice, care consultation, information, and referrals at the national and local levels. The call center’s phone number is 800-272-3900.
What Can You Do?
Preventing and effectively treating Alzheimer’s and related dementias and supporting those living with these diseases are national priorities: We need your help! We encourage you to browse the resources on this website to learn more about these diseases and how to help provide care and support for those living with them, ways you may be able to reduce your own risk of dementia, and how to join a clinical trial or study.
Volunteer for Research
You could help discover new ways to treat and prevent Alzheimer’s and related dementias.
Learn more about volunteering for research.
Find More Resources on Federal Activities
Explore the resources on this website and linked below to find more information from federal government agencies.
- National Institute on Aging (NIA), National Institutes of HealthNIA and the National Plan to Address Alzheimer’s Disease
- Learn about NIA’s efforts toward the National Plan and NIH annual summits that shape research priorities.
- Administration for Community Living (ACL)ACL Support for People with Dementia
- Learn more about Administration for Community Living’s initiatives and programs designed to support people with dementia.
- Centers for Disease Control and Prevention (CDC)BOLD Infrastructure for Alzheimer’s Act
- Find details on this act designed to create a uniform national public health infrastructure to address Alzheimer’s and related dementias.
- National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of HealthNINDS Focus on Alzheimer’s Disease and Related Dementias
Read about the National Institute of Neurological Disorders and Stroke’s research into Alzheimer’s disease-related dementias.
- Office of the Assistant Secretary for Planning and Evaluation (ASPE)ASPE National Plan to Address Alzheimer’s Disease
- Read the full text of the blueprint for achieving the vision of a nation free of Alzheimer’s and related dementias.
- Office of the Assistant Secretary for Planning and Evaluation (ASPE)Intellectual and Developmental Disabilities and Dementia
Read this report on the state of services and support systems for persons with intellectual and developmental disabilities who have dementia.
U.S. Department of Veterans Affairs (VA)Overview of VA Research on Alzheimer’s Disease
Learn about the research efforts supported by the Department of Veterans Affairs to detect, prevent, and treat Alzheimer’s.
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Questions? Contact the ADEAR Center
The Alzheimer’s & related Dementias Education & Referral (ADEAR) Center is a service of the National Institute on Aging at the National Institutes of Health. Call 800-438-4380 or email adear@nia.nih.gov to talk with an information specialist.
This content is provided by the National Institute on Aging (NIA), part of the National Institutes of Health. NIA scientists and other experts review this content to ensure it is accurate and up to date.