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

Decision Tool

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

Decision Tool

A Glossary for People New to Dementia Research:

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

Glossary

Publications of Group and Members

Publications

Additional Resources

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)

Other

Return of Research Results-National Academies Press
Return of Individual Results White Paper-MRCT
Guidelines Genetic Counselling and Testing for Alzheimer's
Tutorials on Genetics (genome.gov)
Alzheimer's Association Webinars 2021 -Laurel Beckett's tutorial on statistics is great

Care/Treatment/Resources

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)

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 Communication Tools

Biomarker Disclosure Toolkit (Pittsburgh ADRC)
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)
Wash U (same as above but pdf's)-Mozersky et al on risk of dementia

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.

ADNI3 Consent Materials

Open Brain Consent

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

Communication for General Public and

People without Cognitive Concerns

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

Brain Donation

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