Materials for participants in Alzheimer disease (AD) dementia research study

June is Alzheimer’s and Brain Awareness month. We are marking it by celebrating our 6-year creative partnership with a research team from the Knight Alzheimer Disease Research Center (ADRC) at Washington University in St. Louis!

In 2019, the research team’s lead investigators, Jessica Mozersky and Sarah Hartz, reached out to HLM to help develop print materials for participants of a research study on Alzheimer Disease (AD) dementia. Since 2020 WeSHARE (Washington University Study of Having Research Results Explained) has offered research results to 416 participants enrolled in the Memory and Aging Project, a longitudinal study of aging, at Washington University.

What is Alzheimer Disease (AD) dementia? AD dementia is a brain disease that slowly gets worse over time. It affects a person’s memory, thinking, and behavior. It’s the most common type of dementia, which is a general term for problems with memory and thinking that interfere with daily life. Alzheimer disease mostly affects older adults. The brain changes associated with Alzheimer disease can be detected many years before symptoms begin.

The challenge

• Create an educational brochure to explain the science of AD dementia and the goals of the research study in a way participants can understand

• Create a research results report template for the ADRC to fill in with individual research results for participants who ask to see them

The study

In the study, research participants with no symptoms currently had research blood tests and neuroimaging to measure risk factors for AD dementia. The research team also collected information about the participants’ age, sex, race, and other demographics. Combining all this information allowed the team to estimate each participant’s risk of developing the early symptoms AD dementia in the next 5 years based on their research results.

The educational brochure

HLM worked with the ADRC team to develop a print brochure that is mailed to all participants. It reminds them about the study purpose and explains the option to find out their estimated risk of developing AD dementia. We used plain language best practices such as to:

• Define jargon

• Show quotes from other research participants about why they chose to learn their results or not

• Include a decision aid with pros and cons of finding out their estimated risk

  
  

The research results report template

Participants who wanted to know their estimated risk could call the research team and make an in-person appointment to get their results report.

Developing the results report template required close collaboration between the research team and HLM staff who specialize in clearly communicating clinical trial results.

To convey sensitive risk information, we used plain language best practices such as to:

• Show a clear purpose

• Use visuals and colors to help explain data

• Use reference labels for results, such as “high” and “low”

Updates to the materials

We have updated the materials in 2022 and 2025 to reflect changes in the study and address feedback the ADRC team received from audience testing with research participants and health professionals.

 “Over the course of the study, we have continually learned that conveying risk in a way that is understandable is a challenge.  We have iteratively modified our materials as we deliver more results, and HLM has really helped us adapt and create visualizations throughout.”

Partnerships like this make us glad to do health literacy work, especially knowing that our combined efforts help people understand health information and make informed decisions!

Funded by NIA R01 AG065234

PIs Sarah Hartz & Jessica Mozersky