Educational Materials

Resources to Help with Risk Communication and Understanding

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.


AGREEDementia Products

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


Publications of Group and Members

Additional Resources


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


Guidelines and Important Basic Information

Biomarker Concepts

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.

Other

Care/Treatment/Resources

For Professionals on Genetics

For Professionals on Dementia Biomarkers

Communication: Researchers to Participants: Resource Sites

Example Communication Tools

Example Consent forms

Description: Alzheimer's Disease Neuroimaging Initiative (ADNI3) is a large study of people living with and without dementia, biomarkers, genetics, neuroimaging, cognitive measures. These consents describe the procedures and lay out the risks underlying them.

Communication for General Public and 

People without Cognitive Concerns

Communication for People with Cognitive Concerns

(To be released soon)

Diversity Disparities and Disclosure

General Terms and Concepts

Professional Training

Legal and Ethical Concerns

Brain Donation

What Next?

  • KAER Toolkit is helpful to guide primary care in evaluation and referral (Gerontological Society of America)
  • MyBrainGuide is helpful for people living with and at risk for cognitive dysfunction (US Against Alzheimer's)




Relevant and Collaborating Groups

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

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.