Measures of Dementia Risk

Many kinds of data are used to predict dementia risk such as increased age, genetic risk, or health conditions that affect the brain.  Biomarkers are measures of what is happening inside the living body, shown by the results of laboratory and imaging tests. Biomarkers can help doctors and scientists diagnose diseases and health conditions, find health risks in a person, monitor responses to treatment, and see how a person's disease or health condition changes over time. For example, changes in the brains of people with these disorders may begin many years before memory loss or other symptoms appear. Many types of biomarker tests are used for research on Alzheimer's disease and related dementias. .

A National Institute on Aging website describes the most common biomarkers and their current uses are described.

Federal Partners Webinar: A general introduction to communicating biomarkers

Below are educational materials that support dementia risk communication developed by members of our group.

A Decision Tool for Blood-based Amyloid test in MCI

from Lindsay Clark, Annalise Rahman-Filipiak, Judy Heidebrink, Jennifer Lingler, Nate Chin and the Symptomatic Group and ADEAR from NIA 

A Decision Tool for Amyloid PET Imaging in MCI*:

from Jennifer Lingler, Judy Heidebrink, the Symptomatic Group, and ADEAR from NIA

*MCI=Mild Cognitive Impairment

A Glossary for People New to Dementia Research:

from Sarah Walter, the Stakeholder's Group and the Alzheimer's Clinical Trials Consortium

Below is information and resources to support informed approaches to dementia risk communication. 

Guidelines and Important Basic Information

The Importance of Biomarker-Based Diagnosis

• RAND Report on Preparedness for Alzheimer's Treatment

Biomarker Concepts

• What is a biomarker? 

A biomarker (short for biological marker) is an objective measure that captures what is happening in a cell or an organism at a given moment. Biomarkers can serve as early warning systems for your health.

• More about biomarkers according to the FDA?
• Context of Use in Biomarkers 
• Laboratory Developed Test (LTD)
• BEST Glossary (Biomarkers, EndpointS, and other Tools Resource)

Implementation of Use of Blood-Based Biomarkers (Global CEOi)-clickable link

Other

Example of Risk Decision Tools for Other Conditions

Breast Cancer Decision Tool

E-prognosis

Tutorials 

 (genome.gov)

 -Laurel Beckett's tutorial on statistics is great

Care/Treatment/Resources

• VA Materials for a Clinical Amyloid Reducing Treatment Program
• Amyloid Reducing Drugs (Aducanumab)
  
• Appropriate Use of Lecanumab

   (Cummings et al., 2023)

• GUIDE model to improve care integration (CMS)
• Dementia Care Resources

   (Research on Clinical Services)

• National Academies Preventing Cognitive Decline
  
• National Academies Therapies for Dementia

• Amyloid-Related Imaging Abnormalities (CME-training from ACR.org) --must create an account and search for Alzheimer's to access this

• Managing Amyloid-Related Imaging Abnormalities (CME-Alzheimer's Assoc.)
  
• ARIA Recommendations (Cogswell et al, 2022)

For Professionals on Genetics

• APOE Terms Defined
• Genetic Diversity Research Status
• Search for Info on Specific Mutations
  
• Alzheimer's and Frontotemporal Mutations Database (currently unavailable)
• Gene Reviews
• What is a polygenic risk score?
• Genetic Testing and Late-Onset AD (video for CE)

For Professionals on Dementia Biomarkers

• LATE-a type of dementia that looks similar to Alzheimer's
• App that identifies risk for AD informs when testing is useful (Schindler)
• Digital Biomarker-Brainwatch Coalition
• The United Consortium (data sharing)
• Inflammatory CAA and AD Biomarkers (ICAB)
• Evaluating the precision of blood based biomakers (Schindler&Global CEOi)

On Cognitive Screening

• Complexities in Cognitive Screening (Fowler)

Communication: Researchers to Participants: Resource Sites

• ADORE Search Engine from National Institute on Aging (NIA)
• Common Communication Tools (NIA)
• Trial Innovation Network: A Large Set of Resources and Examples
• Multiregional Clinical Trials Center (MRCT)
• Tools for Combatting COVID Misinformation (CEAL)
• ClaritI-NIA funded longitudinal imaging

Example Risk Communication Tools and Protocols

• Biomarker Disclosure Toolkit (Pittsburgh ADRC)
• Biomarkerhub (Global CEOi)
• APOE and Amyloid Disclosure (Alzheimer's Prevention Initiative[API])
• Communication Materials from API: APOE and Amyloid Disclosure (Generation Study)
• Washington University Description of their Protocol (see supplement for examples)
• 5 Year dementia risk calculators for research only (Mozersky and Hartz)
• Example of a risk calculator tool for cancer, stroke, diabetes etc. (Wash U.)

Example Consent forms

Open Brain Consent

ConsentTools.org: to help provide clinical researchers with helpful tools for consent

Communication for General Public and 

People without Cognitive Concerns

• Amyloid (NIA)
• Genetics: APOE 4 (NIA)
• Genetics: APOE 4: Multimodal Decision Tool (Genetestornot)
• Why Donate Your Brain to Science

Communication for People with Cognitive Concerns

(To be released soon)

Diversity Disparities and Disclosure

• Resources for Inclusion, a toolbox dedicated to clinical trials (mrctcenter.org)
• Cultural Competence (NIH)
• National Culturally and Linguistically Appropriate Services (CLAS)
• Asian Cohort

General Terms and Concepts

• Glossary AMA of Culturally Appropriate Language (General)
• Glossary APA of Culturally Appropriate Language (General)

Professional Training

• NHGRI Training on Genetics (National Human Genome Research Institute)
• Ethical and Practical Issues in Disclosure of Dementia Risk (TRAIN #131003610)
  

Legal and Ethical Concerns

• American Society for Law Medicine and Ethics
• 23andMe hack and advice (from Being Patient)
• NIA webinar on Sharing Individual Level Data (July 2023)

Brain Donation

• BrainDonationProject
• NIH Biobank

For Professionals Integration with Care

• KAER Toolkit is helpful to guide primary care in evaluation and referral (Gerontological Society of America)

Creating a Positive Life with Dementia

• MyBrainGuide is helpful for people living with and at risk for cognitive dysfunction (US Against Alzheimer's)
• Pathways to Well-Being with Dementia: A Manual of Help, Hope and Inspiration
  
• Dementia Action Alliance
• Front Porch is a program to connect older adults (CA Bay Area for in-person)
• Campaign to Prevent Alzheimer's Disease-a nonprofit to promote this cause
• Alzbuddies pairs college students with people living with AD to prevent loneliness

Advocacy and Professional

Alzheimer's Association

Alzheimer's Disease International

American Health Lawyers Association 

Alzheimer's Research UK

Alzheimer's Society 

American Public Health Association

American Society for Bioethics and Humanities 

American Society for Human Genomics

Association for Frontotemporal Degeneration

B.A.B.E.S. "Beating Alzheimer's by Embracing Science"  

Caregiver/Alzheimer's Support Technology Entrepreneur

Davos Collaborative 

European Alzheimer's Disease Consortium

Lewy Body Dementia Association 

National Society of Genetic Counsellors

Youngtimers Support for People at Genetic Risk for Early Onset Dementia

Governmental

Administration for Community Living 

Center for Disease Control

National Institute on Aging 

Food and Drug Administration Biomarker Qualification Program

TRAIN Free Continuing Education

Academic Affiliates

Alzheimer's Disease Centers

Alzheimer's Prevention Initiative, Banner Alzheimer's Institute 

Banner Alzheimer's Institute 

Boston University ADC 

Boston VA

Brown Univ./Butler Hospital 

Brigham and Women's Hospital and Harvard Medical School

Columbia University Medical Center/Taub Institute

Department of Basic Science Education, (School of Medicine); and Department of Science, Technology, and Society 

Department of Neurodegenerative Diseases and Geriatric Psychiatry, University Clinic Bonn, Germany

Massachusetts General Hospital/Harvard Medical School

Mayo Clinic, Jacksonville

Multi-Regional Clinical Trial Center (MRCT)

National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD)

Palo Alto and San Francisco VA (VISN 21): Mental Illness Research Education and Clinical Center 

Rush ADC

Stanford ADRC

Tufts Medical Center

University of California, San Francisco ADC

University of California, Irvine ADRC

University of California, San Diego ADRC

University of Pennsylvania ADC

University of Pittsburgh

University of Southern California Alzheimer's Therapeutic Research Institute (ATRI)

University of Virginia, School of Nursing

University of Washington ADRC

Virginia Tech

Wake Forest School of Medicine

Washington University Knight ADRC

Washington University School of Medicine

Wellcome Sanger Institute

Wisconsin ADRC

Funding

This website is supported in part by funding from the National Institute on Aging, part of the National Institutes of Health, under award number P30AG066515.