Most People Say They Want to Know Their Risk of Alzheimer’s Dementia, But Few Actually Do Anything About it

As researchers learn more about the development of Alzheimer’s disease, there are increasing opportunities for healthy study participants to learn about their risk of developing Alzheimer’s dementia in the future. Many organizations are advocating for researchers to share their risk estimates with people, but because there are no medical interventions to influence this risk, there are ethical concerns. A new study from Washington University School of Medicine in St. Louis examines the decisions healthy volunteers make when given the opportunity to learn their risk of developing Alzheimer’s dementia. The researchers found a large discrepancy between the percentage of participants who said they would want to know their risk if such assessments were available and the percentage who actually took advantage of the opportunity to learn about their risk.

This knowledge could help researchers design studies that give people the opportunity to receive their results in a way that does not pressure them to choose a particular option. The study also emphasizes the importance of ensuring that participants are genuinely interested in their research results, as hypothetical interest does not necessarily mean that people actually want to know their risk of Alzheimer’s dementia when they receive the information.

There are Currently No Approved Preventive Measures or Medical Interventions to Stop Alzheimer’s Dementia

“In general, there is a tendency to disclose test results to research participants and patients, even in situations where nothing can be done with those results,” said lead author Jessica Mozersky, PhD, assistant professor of medicine at the Bioethics Research Center and researcher at the Charles F. and Joanne Knight Alzheimer Disease Research Center, both at WashU Medicine. “However, our study suggests that in sensitive cases—such as when assessing the risk of developing a debilitating and fatal disease—people should have the option not to receive this information.”

In recent years, the National Academies of Sciences, Engineering and Medicine have recommended that research studies generally provide the option of sharing test results with participants, even if those results cannot be acted upon. Similarly, a committee of study participants, their care partners, and members of dementia advocacy groups recently proposed a charter for the rights of participants in Alzheimer’s studies that advocates access to such results. At the same time, ethical concerns remain, as participants who learn that they are at high risk of developing debilitating and incurable dementia may experience anxiety and other harms. Unlike preventive options for individuals who learn, for example, that they have a high genetic risk for certain types of cancer, there are currently no approved preventive measures or medical interventions to halt Alzheimer’s dementia.

Knowing Your Risk Has Pros and Cons

To get a clearer picture of who lowers their risk of Alzheimer’s dementia and why, Mozersky and her colleagues turned to the Knight Alzheimer Disease Research Center at WashU Medicine, which has been doing research on this topic for a long time. Since 1979, the Memory & Aging Project has provided a framework for studying the brain function of participants as they age. Over the decades, the project has evolved and expanded into several long-term studies on the development and progression of Alzheimer’s disease, including the development of biomarker tests for risk assessment. For the current study, Mozersky’s team focused on volunteers with normal cognitive abilities who underwent a series of tests, including genetic testing, blood draws, and brain scans, which allowed researchers to estimate the likelihood that they would develop Alzheimer’s dementia in the following five years. The subjects originally participated in the long-term study even though they were aware that they would not have the opportunity to learn their own risk scores. Nevertheless, over the years, many expressed a theoretical interest in learning their results, according to Mozersky.

The study, conducted in collaboration with Sarah M. Hartz, MD, PhD, professor of psychiatry at WashU Medicine, made the results available to a subset of Memory & Aging Project participants—274 participants—to assess the psychological impact of knowing their risk and the factors they considered in making that decision. Before making their decision, participants received an information guide explaining how risk is assessed and listing some examples of the benefits and drawbacks of knowing their results. On the positive side, for example, some people learn that their risk is lower than expected. And if the results of the biomarker test indicate that a participant has a high risk of developing Alzheimer’s dementia in the next five years, they may be able to participate in clinical trials of preventive strategies. On the other hand, knowing that you are at high risk can cause anxiety or make it more difficult to obtain certain types of insurance. When the results were still theoretical, 81% of participants in a large long-term study said they would opt for information. However, when the 274 participants in the Memory & Aging Project were offered the actual results, only 60% chose to receive them. Participants with a family history of Alzheimer’s disease and participants who identified themselves as African American were more likely to decline the results than others.

A sample of participants who had refused to learn their results was subsequently surveyed. The most common reasons were that the knowledge would be a burden on themselves or their family members, their own negative experiences and perceptions of Alzheimer’s dementia, that they were satisfied with their current memory, that they were already prepared for the disease, and that the predictions about disease risk were still uncertain. The lack of preventive treatment options is also an important factor in the refusal of biomarker test results in people without symptoms of Alzheimer’s dementia. When the researchers interviewed some participants to better understand their decision not to learn the results, many said that a new effective treatment could change their minds if one became available. The scientists plan to continue their research into these complex issues, especially as the return of results to research participants becomes more common, even if those results cannot yet be acted upon.