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Additional Council-Associated Resources/Information

Listed below are Alzheimer's Disease and related dementias (AD/ADRD) reports, events and websites/blogs resources and information may be located. Many of the agencies are Advisory Council members, while other information has been shared through public comments.

PLEASE NOTE: The information included on this page are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration, or federal agencies and organizations.

 

Table of Contents

Federal Government

Non-Federal Government

Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.

 

Federal Government Resources/Information

Administration for Community Living (ACL)

WEBSITES:

  • Administration for Community Living https://acl.gov/
    The Administration for Community Living was created around the fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities. By funding services and supports provided by networks of community-based organizations, and with investments in research, education, and innovation, ACL helps make this principle a reality for millions of Americans.

  • Brain Health As You Age: You Can Make A Difference https://acl.gov/brain-health
    This webpage offers resources that can help professionals, older adults, and people with disabilities promote brain health.

  • Long-Term Care Locator https://acl.gov/ltc
    LongTermCare.gov, a public service of the ACL, is the government's free information resource about long-term care. Here you can find links to information from agencies and organizations with expertise in these areas.

  • National Long-Term Care Ombudsman Resource Center (NORC) https://ltcombudsman.org/
    The National Long-Term Care Ombudsman Resource Center provides support, technical assistance and training to the 53 State Long-Term Care Ombudsman Programs and their statewide networks of over 500 local Ombudsman entities. The Center's objectives are to enhance the skills, knowledge, and management capacity of the State programs to enable them to handle residents' complaints and represent resident interests in both individual and systems advocacy. Funded by the ACL, the Center is operated by Consumer Voice, The National Consumer Voice for Quality Long-Term Care, in cooperation with the ADvancing States.

  • Services for Native Americans (Older Americans Act Title VI) https://acl.gov/programs/services-native-americans-oaa-title-vi
    ACL funds programs that support American Indians, Alaska Natives and Native Americans in the areas of nutrition, supportive services for older adults, and caregiver services. The nutrition and supportive services grants include congregate and home-delivered meals, information and referral, transportation, personal care, chores, health promotion and disease prevention, and other supportive services. The caregiver services grants include assisting families in caring for older relatives with chronic illness or disability, and grandparents caring for grandchildren. There are other necessary services provided by ACL grants so the people we serve have meaningful support to help them live independently in their communities.

RESOURCES:

 

Administration on Aging (AoA)

WEBSITES:

  • Administration on Aging https://acl.gov/about-acl/administration-aging
    The Administration on Aging (AOA) is the principal agency of the U.S Department of Health and Human Services designated to carry out the provisions of the Older Americans Act of 1965 (OAA), as amended (42 U.S.C.A. § 3001 et seq.). The OAA promotes the well-being of older individuals by providing services and programs designed to help them live independently in their homes and communities. The Act also empowers the federal government to distribute funds to the states for supportive services for individuals over the age of 60.

  • Eldercare Locator https://eldercare.acl.gov/Public/Index.aspx
    The Eldercare Locator, a public service of the AoA, is a nationwide service that connects older Americans and their caregivers with trustworthy local support resources. Since 1991, the Eldercare Locator has been linking those who need assistance with state and local agencies on aging, as well as community-based organizations that serve older adults and their caregivers. Whether help is needed with services such as meals, home care or transportation, or a caregiver needs training and education or a well-deserved break from caregiving responsibilities, the Eldercare Locator is there to point that person in the right direction.

 

Agency for Healthcare Research and Quality (AHRQ)

WEBSITES:

  • Agency for Healthcare Research and Quality https://www.ahrq.gov/
    The Agency for Healthcare Research and Quality's (AHRQ) mission is to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable, and to work within the U.S. Department of Health and Human Services and with other partners to make sure that the evidence is understood and used. We accomplish our mission by focusing on our three core competencies.

  • Evidence-based Practice Center Program: Alzheimer's Disease https://effectivehealthcare.ahrq.gov/health-topics/alzheimers-disease
    The Effective Health Care (EHC) Program improves the quality of health care by providing the best available evidence on the outcomes, benefits and harms, and appropriateness of drugs, devices, and health care services and by helping health care professionals, patients, policymakers, and health care systems make informed health care decisions. The EHC Program achieves this goal by partnering with research centers, academic institutions, health professional societies, consumer organizations, and other stakeholders to conduct research, evidence synthesis, evidence translation, dissemination, and implementation of research findings.

 

 

Centers for Disease Control and Prevention (CDC)

WEBSITES:

  • Centers for Disease Control and Prevention https://www.cdc.gov/
    CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same. CDC increases the health security of our nation. As the nation's health protection agency, CDC saves lives and protects people from health threats. To accomplish our mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.

RESOURCES:

 

Centers for Medicare & Medicaid Services (CMS)

WEBSITES:

  • Centers for Medicare & Medicaid Services https://www.cms.gov/
    The Centers for Medicare & Medicaid Services combines the oversight of the Medicare program, the federal portion of the Medicaid program and State Children's Health Insurance Program, the Health Insurance Marketplace, and related quality assurance activities.

  • Integrated Care Resource Center (ICRC) https://www.integratedcareresourcecenter.com/
    The ICRC is a national initiative of the Centers for Medicare & Medicaid Services' (CMS) Medicare-Medicaid Coordination Office. It helps states to develop integrated care programs that coordinate medical, behavioral health, and long-term services and supports for individuals who are dually eligible for Medicare and Medicaid. Recognizing that states are at different stages of integration, ICRC offers a variety of technical assistance services, including one-on-one and group technical assistance. The resources on this website are continuously updated to reflect the lessons gleaned from on-the-ground experiences in developing integrated care programs.

RESOURCES:

 

Department of Health and Human Services (HHS)

WEBSITES:

  • Department of Health and Human Services https://www.hhs.gov/
    The mission of the U.S. Department of Health and Human Services (HHS) is to enhance the health and well-being of all Americans, by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.

RESOURCES:

 

Department of Veterans Affairs (VA)

WEBSITES:

  • Department of Veterans Affairs https://www.va.gov/
    VA's mission is to provide veterans the world-class benefits and services they have earned — and to do so by adhering to the highest standards of compassion, commitment, excellence, professionalism, integrity, accountability, and stewardship.

RESOURCES:

 

Food and Drug Administration (FDA)

WEBSITES:

  • Food and Drug Administration https://www.fda.gov/
    The Food and Drug Administration is responsible for protecting the public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices; and by ensuring the safety of our nation's food supply, cosmetics, and products that emit radiation. FDA also has responsibility for regulating the manufacturing, marketing, and distribution of tobacco products to protect the public health and to reduce tobacco use by minors. FDA is responsible for advancing the public health by helping to speed innovations that make medical products more effective, safer, and more affordable and by helping the public get the accurate, science-based information they need to use medical products and foods to maintain and improve their health. FDA also plays a significant role in the Nation's counterterrorism capability. FDA fulfills this responsibility by ensuring the security of the food supply and by fostering development of medical products to respond to deliberate and naturally emerging public health threats.

RESOURCES:

 

Government Accountability Office (GAO)

WEBSITES:

  • Government Accountability Office https://www.gao.gov/
    In 2021, the U.S. Government Accountability Office (GAO) celebrates 100 years of making the government work better for you. GAO, often called the "congressional watchdog,” is an independent, non-partisan agency that works for Congress. GAO examines how taxpayer dollars are spent and provides Congress and federal agencies with objective, non-partisan, fact-based information to help the government save money and work more efficiently.

RESOURCES:

 

National Alzheimer's and Dementia Resource Center (NADRC)

WEBSITES:

  • National Alzheimer's and Dementia Resource Center https://nadrc.acl.gov
    The Administration on Aging/Administration for Community Living (AoA/ACL) funds the National Alzheimer's and Dementia Resource Center (NADRC). The goals of the NADRC include, but are not limited to, the provision of expert technical assistance to AoA/ACL and its grantees, as well as making program information and resources available to individuals and organizations outside the Alzheimer's grantee community.

RESOURCES:

 

National Center on Elder Abuse (NCEA)

WEBSITES:

  • National Center on Elder Abuse https://ncea.acl.gov/
    The National Center on Elder Abuse (NCEA) serves as a national resource center dedicated to the prevention of elder mistreatment. First established by the U.S. Administration on Aging (AoA) in 1988 as a national elder abuse resource center, the NCEA was granted a permanent home at AoA in the 1992 amendments made to Title II of the Older Americans Act.

RESOURCES:

 

National Institute on Aging (NIA)

WEBSITES:

  • National Institute on Aging https://www.nia.nih.gov/
    NIA, one of the 27 Institutes and Centers of NIH, leads the Federal Government in conducting and supporting research on aging and the health and well-being of older people. The Institute seeks to understand the nature of aging and the aging process, and diseases and conditions associated with growing older, in order to extend the healthy, active years of life. NIA pursues its mission by funding extramural research at universities and medical centers across the United States and around the world; maintaining an active communications and outreach program; and conducting a vibrant intramural research program at NIA laboratories in Baltimore and Bethesda, Maryland.

  • Alzheimer's and related Dementias Education and Referral (ADEAR) Center https://www.nia.nih.gov/health/about-adear-center
    The U.S. Congress created the ADEAR Center in 1990 to "compile, archive, and disseminate information concerning Alzheimer's disease" for health professionals, people with AD and their families, and the public. The ADEAR Center is a service of the NIA. As a public, the ADEAR Center strives to be a current, comprehensive, unbiased source of information about Alzheimer's disease and related dementias. All our information and materials about the search for causes, treatment, cures, and better diagnostic tools are carefully researched and thoroughly reviewed by NIA scientists and health communicators for accuracy and integrity.

  • Alzheimer's Disease Cooperative Study (ADCS) https://www.adcs.org/
    The ADCS was formed in 1991 as a cooperative agreement between the NIA and the University of California, San Diego. The ADCS is a major initiative for Alzheimer's disease clinical studies in the Federal Government, addressing treatments for both cognitive and behavioral symptoms. The ADCS is part of the NIA Division of Neuroscience's effort to facilitate the discovery, development, and testing of new drugs for the treatment of Alzheimer's disease and is part of the Alzheimer's Disease Prevention Initiative as well. The ADCS was founded by the late Leon Thal, MD, a world leader in Alzheimer's research, to promote the discovery, development, and testing of new drugs for the treatment of Alzheimer's disease. It is part of a larger Alzheimer's disease research and treatment effort at UC San Diego, which includes the Shiley-Marcos Alzheimer's Disease Research Center. Studies of Alzheimer's disease and other neurodegenerative disorders at UC San Diego are part of the clinical and bench strength of the UC System.

  • Alzheimer's Disease Sequencing Project (ADSP) https://www.niagads.org/adsp/content/home
    The overarching goals of the ADSP are to: (1) Identify new genomic variants contributing to increased risk of developing Late-Onset Alzheimer's Disease (LOAD). (2) Identify new genomic variants contributing to protection against developing Alzheimer's Disease (AD). (3) Provide insight as to why individuals with known risk factor variants escape from developing AD. (4) Examine these factors in multi-ethnic populations as applicable in order to identify new pathways for disease prevention. The ADSP is supported by the NIA and the National Human Genome Research Institute. The NIA Genetics of Alzheimer's Disease Storage Site (NIAGADS) at the University of Pennsylvania acts as a coordinating center for the ADSP Discovery Phase. Sample plating and shipping is coordinated by the National Cell Repository for Alzheimer's Disease (NCRAD). A list of the participating studies contributing samples to this project can be found here. Harmonization and meta-analysis is coordinated by the Genome Center for Alzheimer's Disease (GCAD).

  • Alzheimer's Locator https://www.alzheimers.gov/
    Alzheimers.gov is the Federal Government portal to information and resources on Alzheimer's disease and related dementias, including Lewy body dementia, frontotemporal disorders, and vascular dementia. Alzheimers.gov is managed by the NIA, but is truly a team effort across the Federal Government. Several government agencies and agency-specific subject-matter experts provided input into the development of the website. A primary goal of Alzheimers.gov is to connect people to the many federal resources available to educate and support people whose lives are touched by these devastating diseases in their various roles. Whether you are living with dementia, a family member or friend, health care provider or other health care professional, researcher, or advocate, Alzheimers.gov is designed for you.

  • International Alzheimer's Disease Research Portfolio (IADRP) https://iadrp.nia.nih.gov/
    Launched in 2010 as a joint collaboration between the NIA and the Alzheimer's Association, the IADRP collates and categorizes the portfolios of major organizations for areas of shared priorities as well as areas of opportunities to inform coordination and collective efforts that seek to advance Alzheimer's disease and related dementias (AD/ADRD) research. AD/ADRD are recognized as a public health crises worldwide. As public and private funding agencies around the world enhance and expand their support of AD/ADRD research, there is an urgent need to coordinate funding strategies and leverage resources in order to maximize the impact on public health, avoid duplication of effort and reduce inefficiency. Such coordination requires a comprehensive assessment of the current landscape of AD/ADRD research in the United States and internationally.

  • National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site https://www.niagads.org/home
    NIA has established the NIAGADS as a national genetics data repository in order to facilitate access by qualified investigators to genotypic data for the study of the genetics of late-onset Alzheimer's disease. It is the policy of the NIA that all Genetic Data derived from NIA funded studies for the genetics of late-onset Alzheimer's disease be deposited at NIAGADS or another NIA approved site or both whenever possible. Such Genetic Data shall be made available as soon as possible, but no later than upon acceptance of a subset of data for publication or public disclosure of a submitted patent application, whichever is earlier. For example, after publication of preliminary reports of the work, a subset of phenotypic data and Genetic Data is to be shared with other investigators for secondary analysis. Generally, this will be a subset of data, or data that are made public and will not typically include the full range of Associated Phenotypic Data being collected in genetic studies. NIAGADS along with other NIA approved sites will make these Genetic Data and Associated Phenotypic Data available to qualified investigators in the scientific community for secondary analysis in accordance with standards established by the NIA.

  • Optimizing Participation in Alzheimer's Research https://nia-research.ideascale.com/a/ideas/recent/campaign-filter/byids/campaigns/23294/stage/unspecified
    Navigating the complex United States health care system can be challenging for people living with Alzheimer's disease and related dementias (AD/ADRD) and their caregivers. They must pursue an uncertain course of care of unknown duration across different care settings and interact with many different types of care providers and many different types of interventions. Models of dementia care have evolved in recent years and have the potential to improve outcomes. Barriers to adoption, however, include but are not limited to workforce limitations, the cost of practice redesign, and limited uptake by insurers and health systems. The goal of our intended prize competition is to yield innovations that improve the quality of care for people living with AD/ADRD by establishing a proof of concept for the creation of a widely accessible and innovative technology tool(s) that addresses unmet needs in care coordination and/or care navigation through the health system.

RESOURCES:

 

National Institutes of Health (NIH)

WEBSITES:

  • National Institutes of Health https://www.nih.gov/
    The National Institutes of Health, part of the Public Health Service, supports biomedical and behavioral research with the United States and abroad, conducts research in its own laboratories and clinics, trains promising young researchers, and promotes collecting and sharing medical knowledge.

  • Accelerating Medicines Partnership (AMP) https://www.nih.gov/research-training/accelerating-medicines-partnership-amp
    The Accelerating Medicines Partnership (AMP) is a public-private partnership between the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), 10 biopharmaceutical companies and multiple non-profit organizations to transform the current model for developing new diagnostics and treatments by jointly identifying and validating promising biological targets for therapeutics. The ultimate goal is to increase the number of new diagnostics and therapies for patients and reduce the time and cost of developing them.

RESOURCES:

 

Office of the Assistant Secretary for Planning and Evaluation (ASPE)

WEBSITES:

  • Office of the Assistant Secretary for Planning and Evaluation https://aspe.hhs.gov/
    ASPE advises the Secretary of the Department of Health and Human Services on policy development in health, disability, human services, data, and science; and provides advice and analysis on economic policy. The ASPE leads special initiatives; coordinates the Department's evaluation, research, and demonstration activities; and manages cross-Department planning activities such as strategic planning, legislative planning, and review of regulations. Integral to this role, The ASPE conducts research and evaluation studies; develops policy analyses; and estimates the cost and benefits of policy alternatives under consideration by the Department or Congress.

RESOURCES:

 

White House

WEBSITES:

  • White House https://www.whitehouse.gov/
    The White House is where the President and First Family of the United States live and work — but it's also the People's House, where we hope all Americans feel a sense of inclusion and belonging.

RESOURCES:

 

Non-Federal Government Resources/Information

AARP Public Policy Institute

WEBSITES:

  • AARP Public Policy Institute https://www.aarp.org/ppi/
    The AARP Public Policy Institute (PPI) promotes the development of sound, creative policies to address our common need for economic security, health care, and quality of life. Two initiatives created to help more Americans build financial security are housed in PPI. Both offer feasible and consumer-friendly ideas for policy makers and the private sector.

RESOURCES:

 

Alzheimer's Association

WEBSITES:

  • Alzheimer's Association https://www.alz.org/
    The Alzheimer's Association leads the way to end Alzheimer's and all other dementia -- by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.

RESOURCES:

 

Alzheimer's Foundation of America (AFA)

WEBSITES:

  • Alzheimer's Foundation of America https://alzfdn.org/
    The mission of the Alzheimer's Foundation of America (AFA) is to provide support, services and education to individuals, families and caregivers affected by Alzheimer's disease and related dementias nationwide, and fund research for better treatment and a cure.

RESOURCES:

 

American Academy of Developmental Medicine and Dentistry (AADMD)

WEBSITES:

RESOURCES:

 

American Health Care Association (AHCA)

WEBSITES:

  • American Health Care Association https://www.ahcancal.org/Pages/default.aspx
    The American Health Care Association and the National Center for Assisted Living (AHCA/NCAL) is the largest association in the United States representing long term and post-acute care providers, with more than 14,000 member facilities. Our diverse membership includes non-profit and proprietary skilled nursing centers, assisted living communities, sub-acute centers and homes for individuals with intellectual and development disabilities. By delivering solutions for quality care, AHCA/NCAL aims to improve the lives of the millions of frail, elderly and individuals with disabilities who receive long term or post-acute care in our member facilities each day.

RESOURCES:

 

American Medical Association (AMA)

WEBSITES:

  • American Medical Association https://www.ama-assn.org/
    The American Medical Association, founded in 1847 and incorporated in 1897, is the largest association and lobby group of physicians--both MDs and DOs--and medical students in the United States. The AMA's stated mission is "to promote the art and science of medicine and the betterment of public health."

RESOURCES:

 

Donald W. Reynolds Foundation

WEBSITES:

  • Donald W. Reynolds Foundation http://www.donaldwreynolds.okpls.org/
    The Donald W. Reynolds Foundation is a national philanthropic organization founded in 1954 by the late media entrepreneur for whom it is named. Headquartered in Las Vegas, Nevada, it is one of the largest private foundations in the United States and has contributed over $270 million to organizations in Oklahoma.

  • Portal of Geriatrics Online Education (POGOe) https://pogoe.org/
    The POGOe is free collection of expert-contributed geriatrics educational materials for educators and learners. Our materials are available digitally and use various teaching methods. The mission is to encourage the free exchange of teaching and assessment materials in order to promote geriatrics education in the fields of geriatrics and gerontology. Funded by the Donald W. Reynolds Foundation, POGOe is managed by the Icahn School of Medicine at Mount Sinai, Department of Geriatrics and Palliative Medicine, on behalf of the Association of Directors of Geriatric Academic Programs (ADGAP). The site is operated through a partnership of the Icahn School of Medicine at Mount Sinai and Vanderbilt University School of Medicine, Department of Biomedical Informatics and Division of Geriatrics.

 

Family Caregiver Alliance

WEBSITES:

  • Family Caregiver Alliance https://www.caregiver.org/
    For more than 40 years, FCA has provided services to family caregivers of adults with physical and cognitive impairments, such as Parkinson's, stroke, Alzheimer's and other types of dementia. Our services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Ongoing support is available with FCA, also now on a digital service platform. FCA is a longtime advocate for caregivers in the areas of policy, health and social system development, research, and public awareness, on the state, national and international levels.

RESOURCES:

 

Journal of the American Medical Directors Association

WEBSITES:

  • Journal of the American Medical Directors Association https://www.jamda.com/
    JAMDA is the leading peer-reviewed publication for practical information and research directly applicable to healthcare professionals providing post-acute and long-term care (PA/LTC), as well as policy-makers, organizational leaders, educators, and advocates. The journal is an indispensable resource for medical directors, attending physicians, nurses, consultant pharmacists, geriatric psychiatrists, nurse practitioners, physician assistants, physical and occupational therapists, social workers, and others providing, overseeing, and promoting quality PA/LTC.

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LEAD Coalition

WEBSITES:

  • LEAD Coalition http://www.leadcoalition.org/
    Leaders Engaged on Alzheimer's Disease (LEAD Coalition) is a national coalition whose mission is to mobilize an engaged network of collaborating organizations to focus the nation's attention on Alzheimer's disease and other forms of dementia and to accelerate transformational progress in: Care and support to enrich the quality of life of individuals with dementia and their caregivers; Detection and diagnosis; and Research leading to the prevention, effective treatment, and eventual cures. The LEAD Coalition believes that the growing threat from dementia presents a moral imperative for urgent action.

RESOURCES:

 

National Quality Forum

WEBSITES:

  • National Quality Forum http://www.qualityforum.org/Home.aspx
    The National Quality Forum (NQF) is a not-for-profit, nonpartisan, membership-based organization that works to catalyze improvements in healthcare. NQF measures and standards serve as a critically important foundation for initiatives to enhance healthcare value, make patient care safer, and achieve better outcomes.

RESOURCES:

 

New York Academy of Sciences

WEBSITES:

  • New York Academy of Sciences https://www.nyas.org/
    The mission of the New York Academy of Sciences is to drive innovative solutions to society's challenges by advancing scientific research, education and policy.

RESOURCES:

 

Research in Gerontological Nursing

WEBSITES:

  • Research in Gerontological Nursing https://journals.healio.com/journal/rgn
    Research in Gerontological Nursing is a bimonthly, peer-reviewed publication offering cutting-edge, interdisciplinary gerontological nursing research to educators, academicians, clinicians, and policymakers involved with older adults in all health care settings. Begin to explore the Journal and all of its great benefits such as: Quantitative, qualitative, methodological, and theoretical research articles; Featured intervention studies; The annual State of the Science Commentary, authored by national gerontological leaders; Access to current articles, as well as several years of archived content; and Manuscripts posted online just 2 months after acceptance.

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UsAgainstAlzheimer's

WEBSITES:

  • UsAgainstAlzheimer's https://www.usagainstalzheimers.org/
    UsAgainstAlzheimer's: Working to End Alzheimer's Disease It is a national and global emergency that has a devastating health, social and economic toll on millions of people living with this disease, their families and caregivers. UsAgainstAlzheimer's exists to conquer Alzheimer's disease.

  • Global CEO Initiative on Alzheimer's Disease (CEOi) https://www.usagainstalzheimers.org/our-enterprise/CEOi
    The CEOi, founded in 2013, is an organization of private-sector leaders who have joined together to provide business leadership in the fight against Alzheimer's. The CEOi believes that, during this era of aging populations, it will take visionary, coordinated, goal-oriented leadership of public and private leaders working together to solve our greatest challenges. It is convened by UsAgainstAlzheimer's.

 

World Health Organization

WEBSITES:

  • World Health Organization: Dementia https://www.who.int/health-topics/dementia#tab=tab_1
    Dementia is an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour that interfere significantly with a person's ability to maintain their activities of daily living. Although age is the strongest known risk factor for dementia, it is not a normal part of ageing. WHO is working very closely with Member States and other relevant stakeholders to improve the lives of people with dementia and their carers, while decreasing the impact of dementia on communities and countries.

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