Enhancing the NACC Dataset

The National Alzheimer’s Coordinating Center (NACC) has begun collecting social determinants of health (SDOH) across the Alzheimer’s Disease Research Network (ADRC), adding a new dimension to its database on Alzheimer’s disease and related dementias. This collaborative initiative, involving researchers at a dozen institutions nationwide and described in Alzheimer’s & Dementia, will give scientists a powerful new way to analyze how social conditions affect the progression of dementia.

"Our social environments, our educational experiences, our insurance coverage, our occupational statuses and working conditions, our social relationships … all of these things can have direct impacts on health,” says Megan Zuelsdorff, PhD, assistant professor of nursing at the University of Wisconsin in Madison, WI and lead author on the paper. These social determinants of health have long been known to modify one’s risk of developing Alzheimer’s disease and affect the progression of the disease in those who do develop it. For example, people with less access to medical care, fewer social connections, or lower levels of education suffer disproportionate burdens of dementia as they age. 

“Social determinants of health are upstream of many individually modifiable risk and protective factors, which is why we need to talk about addressing them, which is why we need to measure them,” says Zuelsdorff. She adds that while NACC collects a deep set of data on participants’ clinical health, “what we didn’t have on any kind of systematized level was an understanding of the environments that people were coming to us from.” 

To address this gap, Zuelsdorff and her colleague Lisa Barnes, PhD, professor of gerontology and geriatric medicine at Rush University Medical Center in Chicago, IL, convened members of the ADRC Clinical Task Force to figure out how to start collecting SDOH data. One of the first priorities was to keep the collection process simple for participants. “We’re already asking them to do a couple of hours of cognitive testing, they’re being measured and poked and prodded, they’re having a blood draw … it’s really a lot,” says Zuelsdorff. The group set a goal of having the social survey take no more than 15-20 minutes to complete. 

Within that constraint, the team aimed to cover as broad a range of factors as possible. “Everyone in the study is an individual, and they may be really well-resourced in one domain of their life but be facing a lot of challenges in another domain, so we wanted to make sure we were collecting data from across life domains,” says Zuelsdorff. For example, a person’s environmental domain includes their built environment and community, while their interpersonal domain encompasses social relationships. “Each ADRC is always trying to do a lot of outreach and make sure [to include] groups that have been underrepresented in research … so we wanted to make sure that the factors that we selected would be salient for everyone,” says Zuelsdorff. 

With an outline of the information they wanted to collect, Zuelsdorff and her colleagues looked for the best ways to ask the questions. “We always want to use instrumentation that is validated,” says Zuelsdorff. Fortunately, other large studies of aging in the US have already developed and tested questionnaires to track people’s social and environmental situations. “Those became a big resource for us, because we figured it would be a win-win to be using the same questions and instrumentation that these other big studies of aging were already using,” says Zuelsdorff, adding that “we literally used the tools that they had shown us were already working.” Besides streamlining the questionnaire design process, using the same questions will also make it easier to compare results between the NACC dataset and other sources. 

ADRCs have now added the final questionnaire to their routine data collection procedures, and it seems to be working well. Not only is the additional burden typically less than 20 minutes of participants’ time, but participants seem enthusiastic to be answering questions about their healthcare experiences, financial stress, social connectedness, transportation security, and other social factors. “What we’ve been hearing … is that participants are excited about the social determinants data that are being collected; a lot of them haven’t been asked these questions before but immediately understand that these are factors that do influence their health,” says Zuelsdorff. 

Within a year, the new protocol will likely have collected enough data to start proving its value to researchers. “I do think that we will have an amazing trove of data at that point that can be studied in a lot of innovative ways, and paired with existing data to get a much more clear sense of the mechanisms by which these upstream factors are ultimately getting under the skin and under the skull to influence brain health,” she says. 

Besides testing existing hypotheses about the role of social determinants in dementia, the additional data should also generate new research questions. “I think we’re going to start seeing new projects and new sources of funding come out of these social determinants data, as preliminary building blocks toward bigger and better and more tailored projects,” says Zuelsdorff. 

Zuelsdorff M, Abner EL, Balls-Berry JE, et al. Introducing social determinants of health to the Alzheimer's Disease Research Center network: Development and implementation in the Uniform Data Set. Alzheimer's Dement. 2025; 21:e70279. https://doi.org/10.1002/alz.70279