Listed below are reports that discuss Alzheimer's Disease and related dementias (AD/ADRD) that NAPA has been alerted to by participating affiliates and Council members. The links that follow the title will take you to the agency website hosting that report.
PLEASE NOTE: Information included here is not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in NAPA.
Table of Contents
PLEASE NOTE: Information included here is not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in NAPA.
Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.
Federal Government Reports
Administration for Community Living (ACL)
2016 Training Resources Toolkit for Dementia Care Providers and Volunteers -- ACL Website Link
2017 Profile of Older Americans -- ACL Website Link
BRAIN INJURIES: Prevention, Rehabilitation, and Community Living -- ACL Website Link
Advance Planning Guides for Persons with Dementia and Caregivers on FOUR topics -- ACL Website Link
Dementia Capability Assessment Tool -- ACL Website Link
Dementia Quality Assurance and Measures Tools -- ACL Website Link
Dementia-capable States and Communities: the Basics (September 2014) -- ACL Website Link
Guide for Professionals on Practical Strategies for Persons with Dementia Living Alone -- ACL Website Link
How at Risk for Abuse Are People with Dementia? (2011) -- ACL Website Link
IDD and Dementia (July 2015) -- NAPA Website Link
Identifying and Meeting the Needs of Individuals with Dementia Who Live Alone -- ACL Website Link
Responding to the Wandering and Exit-seeking Behaviors of People with Dementia (May 2015) -- ACL Website Link
SPECIAL EDITION of ASA Generations: Supporting People with Dementia and Their Caregivers in the Community (September 2017) -- ACL Website Link
Training Family Caregivers on Skills for Behavioral Symptoms -- ACL Website Link
Translating Innovation to Impact: Evidence-based Interventions to Support People with Alzheimer's Disease and Their Caregivers at Home and in the Community (September 2012) -- ACL Website Link
Centers for Disease Control and Prevention (CDC)
Demographic and Health Status Differences Among People Aged 45 or Older With and Without Functional Difficulties Related to Increased Confusion or Memory Loss, 2011 Behavioral Risk Factor Surveillance System (March 2015) -- CDC Website Link
Increased Confusion and Memory Loss in Households, 2011 Behavioral Risk Factor Surveillance System (March 2015) -- CDC Website Link
Dementia Special Care Units in Residential Care Communities: United States, 2010 (November 2013) -- CDC Website Link
Adult Caregivers in the United States: Characteristics and Diffrences in Well-being, by Caregiver Age and Caregiving Status (August 2013) -- CDC Website Link
Self-Reported Increased Confusion or Memory Loss and Associated Functional Difficulties Among Adults Aged >60 Years -- 21 States, 2011 (May 2013) -- CDC Website Link
Beliefs and Communication Practices Regarding Cognitive Functioning Among Consumers and Primary Care Providers in the United States, 2009 (April 2013) -- CDC Website Link
The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018 (2013) -- CDC Website Link
Centers for Medicare and Medicaid Services (CMS)
Centers for Medicare & Medicaid Services: Innovation Center New Direction (September 2017) -- CMS Website Link
Medicare Chronic Conditions Dashboards (September 2014) -- CMS Website Link
Chronic Conditions Chartbook: 2012 Edition (April 2013) -- CMS Website Link
Department of Defence (DoD)
National Research Action Plan: Responding to the Executive Order Improving Access to Mental Health Services for Veterans, Service Members, and Military Families (August 2013) -- White House Website Link
Department of Veterans Affairs (VA)
Veterans Health Administration (VHA) Innovative Dementia Models of Care: Patient-Centered Alternatives to Institutional Extended Care (September 2015) -- VA Website Link
Government Accountability Office (GAO)
Antipsychotic Drug Use: HHS Has Initiatives to Reduce Use among Older Adults in Nursing Homes, but Should Expand Efforts to Other Settings (March 2015) -- GAO Website Link
National Institute on Aging (NIA)
Assessing Cognitive Impairment in Older Patients: A Quick Guide for Primary Care Physicians (June 2015) -- NIA Website Link
National Institutes of Health (NIH)
ADRD Summit 2016 Report to the National Advisory Neurological Disorders and Stroke Council (September 2016) -- NAPA Website Link
2013-2014 Alzheimer's Disease Progress Report -- NIH Website Link
2011-2012 Alzheimer's Disease Progress Report -- NIH Website Link
Down Syndrome Directions: National Institutes of Health Research Plan on Down Syndrome -- NIH Website Link
Office of the Assistant Secretary for Planning and Evaluation (ASPE)
An Evaluation of AoA's Program to Prevent Elder Abuse: Final Report (August 2016) -- ASPE Website Link
Compendium of Residential Care and Assisted Living Regulations and Policy: 2015 Edition (June 2015) -- ASPE Website Link
Regulatory Review of Adult Day Services: Final Report, 2014 Edition (December 2014) -- ASPE Website Link
Support and Services at Home (SASH) Evaluation: First Annual Report (September 2014) -- ASPE Website Link
What is the Effect of Dementia on Hospitalization and Emergency Department Use in Residential Care Facilities? (September 2014) -- ASPE Website Link
Disability and Care Needs of Older Americans by Dementia Status: An Analysis of the 2011 National Health and Aging Trends Study (April 2014) -- ASPE Website Link
Disability and Care Needs of Older Americans: An Analysis of the 2011 National Health and Aging Trends Study (April 2014) -- ASPE Website Link
Informal Caregiving for Older Americans: An Analysis of the 2011 National Health and Aging Trends Study (April 2014) -- ASPE Website Link
Picture of Housing and Health: Medicare and Medicaid Use Among Older Adults in HUD-Assisted Housing (March 2014) -- ASPE Website Link
Racial and Ethnic Disparities in Alzheimer's Disease: A Literature Review (February 2014) -- ASPE Website Link
Care Coordination for People with Alzheimer's Disease and Related Dementias: Literature Review (December 2013) -- ASPE Website Link
Hospital and Emergency Department Use by People with Alzheimer's Disease and Related Disorders: Final Report (August 2013) -- ASPE Website Link
Improving Care for Populations Disproportionately Affected by Alzheimer's Disease and Related Dementias: Report from the Task Force on Specific Populations (June 2013) -- ASPE Website Link
White House
2015 White House Conference on Aging: Final Report (2015) -- White House Website Link
Agency Reports
AARP Public Policy Institute
From Research to Standard Practice: Advancing Proven Programs to Support Family Caregivers of Persons Living with Dementia (September 2017) -- AARP Website Link
Alzheimer's Association
Alzheimer's from the Frontlines: Challenges a National Alzheimer's Plan Must Address (2011) -- Alzheimer's Association Website Link; NAPA Public Comments Link
A National Alzheimer's Strategic Plan: The Report of the Alzheimer's Study Group -- Alzheimer's Association Website Link
State Government Alzheimer's Disease Plans -- Alzheimer's Association Website Link
Alzheimer's Foundation of America (AFA)
Time to Build: Action Steps and Recommendations to Update the "National Plan to Address Alzheimer's Disease" (December 2012) -- AFA Website Link; NAPA Public Comments Link
The Time to Act Is Now: Action Steps and Recommendations to the Draft National Plan to Address Alzheimer's Disease (March 2012) -- AFA Website Link; NAPA Public Comments Link
No Time to Waste: Recommendations for an Integrated National Plan to Overcome Alzheimer's Disease (October 2011) -- AFA Website Link; NAPA Public Comments Link
American Academy of Developmental Medicine and Dentistry (AADMD)
My Thinker's Not Working: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports (January 2012) -- AADMD Website Link; NAPA Public Comments Link
American Health Care Association (AHCA)
State Medicaid Reimbursement Policies and Practices in Assisted Living (September 2009) -- AHCA Website Link
American Medical Association (AMA)
Association of the Centers for Medicare & Medicaid Services' National Partnership to Improve Dementia Care With the Use of Antipsychotics and Other Psychotropics in Long-term Care in the United States From 2009 to 2014 (March 2018) -- JAMA International Website Link
Elsevier Science
Better Living With Dementia: Implications for Individuals, Families, Communities, and Societies (2018)
Better Living With Dementia: Implications for Individuals, Families, Communities, and Societies highlights evidence-based best practices for improving the lives of patients with dementia. It presents the local and global challenges of these patients, also coupling foundational knowledge with specific strategies to overcome these challenges. The book examines the trajectory of the disease, offers stage-appropriate practices and strategies to improve quality of life, provides theoretical and practical frameworks that inform on ways to support and care for individuals living with dementia, includes evidence-based recommendations for research, and details global examples of care approaches that work.
- Weaves research evidence and theories with practical know-how
- Identifies support strategies for home, community, and health care settings
- Provides stage-appropriate strategies relative to dementia severity
- Summarizes dementia pathology, diagnosis, and progression
- Considers the changing needs of both the individual with dementia and family and formal caregivers
- Offers evidence-informed recommendations for research, practice, policy, and how to make things better at home, in the community, in healthcare and service settings, and through national policies
- Provides local and global exemplars of what works
- Provides case vignettes to illustrate key points with real examples
- Contains brief conversations with national and international experts
Family Caregiver Alliance
Selected Caregiver Assessment Measures (2nd Edition): A Resource Inventory for Practitioners (December 2012) -- Family Caregiver Alliance Website Link
Humbolt University of Berlin
Yearbook Ethics in Clinics: Dementia and Ethics in Medical Standards for Good (2015) -- Verlag Königshausen & Neumann Website Link
Journal of the American Medical Directors Association
Advancing Research on Care Needs and Supportive Approaches for Persons With Dementia: Recommendations and Rationale (December 2018) -- JAMDA Link
LEAD Coalition
The Path Ahead: A Framework for a Transformative National Plan to Defeat Alzheimer's Disease -- LEAD Website Link; NAPA Public Comments Link
Oklahoma State Legislature
The Final Report of the Task Force on the Effect of Alzheimer's Disease in Oklahoma (September 2009) -- Oklahoma Website Link; NAPA Public Comments Link
Research in Gerontological Nursing
Measurement Challenges in Research With Individuals With Cognitive Impairment (January 2019) -- Research in Gerontological Nursing
Response to the Commentary: Measurement Challenges in Research With Individuals With Cognitive Impairment-What Should We Measure and Why? (January 2019) -- Research in Gerontological Nursing
Rowman & Littlefield Publishers
Brain Health as You Age: A Practical Guide to Maintenance and Prevention (November 2018)
Have you ever spent 10 minutes looking for your reading glasses, and they were on the top of your head? Or, have you walked into a room and forgotten why you went there? Most people, even younger ones, have had these experiences but when should such instances be something of concern? What are the normal signs of aging? Is there anything you can do to maintain your brain health as you age?
Brain Health as Your Age provides useful, achievable actions you can take to reduce your risk of brain function decline, accurate information about identifying problems, and real solutions. The authors offer useful anecdotes and scientifically validated information -- important tools in separating myth from reality. The authors separate fact from fiction to ensure that recommendations are evidence-based, practical, useful, achievable, and measurable.
Written by a world-renowned cognitive specialist, an extraordinary house call physician, and an award-winning author on eldercare issues, this book addresses both normal and abnormal decline and best practices for addressing both. Brain health, cognitive impairment, and mood disorders are serious issues. This book is an accessible starting point for understanding healthy brain aging and when to seek help. It's never too soon to start preventing cognitive decline, or understanding it once it's begun, and this book offers the perfect entry point for readers young and old.
Thrive Global
Staying Engaged: A Prescription for Health and Well-being for People Living with Dementia (September 2017) -- Thrive Global