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New funding helps USC Dornsife researchers gain new insights into causes and effects of cognitive decline among American’s. (Composite: Letty Avila. Image source: iStock.)

$59 million boost enhances USC Dornsife’s Understanding America Study and nationwide research

National Institute on Aging grants increase study participant diversity, add new data sources and fund new research on Alzheimer’s disease and related dementia.
ByDarrin S. Joy

To quickly and accurately assess the American public’s attitudes on a wide range of topics — including health, work, politics and religion — researchers nationwide turn to the Understanding America Study (UAS).

With $59 million in new grants, this prized research tool — administered by the Center for Economic and Social Research (CESR) at the USC Dornsife College of Letters, Arts and Sciences — will soon provide even more robust data to researchers.

The bulk of the funding, $42 million from the National Institute on Aging (NIA), will support an expansion of the UAS. This includes significantly increasing the number of participants, with a focus on specific racial and ethnic groups, and integrating data from new sources such as wearable technologies.

The remaining $17 million from the NIA will fund two novel UAS research projects. One project combines UAS data with genomic studies to paint a clearer picture of who is at greatest risk of Alzheimer’s disease and dementia. The other aims to gain new insights into factors that affect the well-being of caregivers for people with Alzheimer’s and dementia.

“The UAS is already an unparalleled tool for giving researchers a broad, long-term view of what influences the daily lives of Americans,” says Arie Kapteyn, CESR’s founder and director. “These grants will help us create a much more detailed picture for the research community, with important and unprecedented insight into Alzheimer’s disease and dementia that should help improve life for those needing care and their caregivers.”

A nationally representative sample

The UAS includes more than 14,000 randomly selected adults who make up a panel representative of the U.S. population and regularly complete web-based surveys.

Scholars throughout the country highly value the UAS because it enables them to rapidly distribute survey questions to these panelists, achieving response rates between 70% and 75%. Moreover, all data is publicly available, allowing any researcher to analyze the entire dataset for their studies.

The $42 million grant will support not only increasing the number of panelists to 20,000 by next year but also the integration of wearable technologies such as Fitbits and devices that measure air quality.

“Increasing the panel size and adding new dimensions to the UAS, including data from wearables, genomic testing, local environmental records and other sources, will give researchers much greater power to explore their questions,” Kapteyn said.

Understanding Americans who care for people with dementia

While research regarding Alzheimer’s disease is growing, relatively little is known about the more than 16 million Americans who provide over 18 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias, according to the latest U.S. Centers for Disease Control figures. Nearly two-thirds of these caregivers expect to continue providing care for more than five years.

These figures are projected to increase significantly as the baby boomer generation ages, leading to nearly 12 million people 65 or older living with dementia by 2040, according to the nonprofit Population Reference Bureau.

Supported by a $5 million NIA grant — part of the $59 million total funding — Marco Angrisani, associate professor (research) of economics, is using the UAS to identify caregivers and to study disparities and inequalities in their health and well-being. His study will compare caregivers for people with dementia or other cognitive impairments with other caregivers. Unlike previous studies, this one focuses on individuals who self-identify as caregivers, thus capturing a broader range of subjects.

Insights from the study may inform guidelines for improving conditions and overall well-being for caregivers, says Angrisani, a senior economist at CESR and one of the original developers of the UAS.

By equipping caregivers with Fitbits, his team can track their activity and stress levels throughout the day. An app developed by the team also enables participants to report their feelings at six random times each day.

“The idea is to cross-check or contrast what the Fitbit tells us with what people say to determine how these two measures may align or diverge,” Angrisani says.

Pairing Fitbit data with responses to survey questions will paint a more complete picture of the factors most affecting caregivers’ psychological and physical health — information crucial for improving their conditions.

Understanding UAS panelists’ genetics

With $12 million of the NIA funding, Titus Galama, director of CESR’s Center for the Study of Health Inequality, is building a richer picture of genetic factors contributing to cognitive decline later in life.

Human genetics studies have produced vast amounts of data linking genes to various traits, from personality to health conditions and even education levels. Nearly all traits involve millions of tiny genetic effects, making them polygenic. Researchers use this information to produce “polygenic scores,” which indicate the tendency of a person to have a specific trait.

For this project, Galama is developing polygenic scores to assess Alzheimer’s disease and dementia risk among UAS panelists.

They will combine these scores with information from UAS surveys, wearable devices and administrative records, as well as environmental and socioeconomic data. Administrative records include employment, education and health information, while environmental data encompasses socioeconomic, geographic and other factors.

Additionally, CESR researchers are analyzing so-called “paradata,” which are by-products of panelists’ interactions with UAS surveys. “These include things like mouse movements and keystrokes,” Galama says.

An increased number of typing errors and other slips could indicate cognitive decline, so including these factors with the polygenic scores enhances their reliability.

With the collected data, Galama’s team will identify populations at increased risk of cognitive decline.

They will also examine how genetic and non-genetic factors, such as environment or location, influence the risk of Alzheimer’s disease and dementia. Furthermore, they will study how genetics can influence a person’s resilience to adverse life events that impact cognitive function.

Collectively, this information could revolutionize research on cognitive function, Galama believes. Improved ability to identify people at risk allows researchers to study behavioral and socioeconomic factors that may explain why some suffer from cognitive decline and others don’t, despite similar risk. Eventually this may point to interventions.

“A big part of this project’s impact comes from making our data and findings publicly available,” he says. “Doing so promotes further economic and social-science research around Alzheimer’s disease, dementia and other cognitive issues, which we hope will ultimately lead to better prevention and care.”

Understanding disparities in America

The Understanding America Study (UAS) was launched in 2014. Its main funding comes from the NIA and the U.S. Social Security Administration, but it also conducts research for investigators at other universities or research institutes.

With the $42 million grant, says Kapteyn, the UAS will be better equipped to identify factors that explain the racial and socio-economic disparities that many people encounter throughout their lives, including racial discrimination, health care and educational inequalities, and differences in their physical and social environments.

“The UAS aims to uncover the root causes of racial and socioeconomic disparities by examining a wide range of factors throughout individuals’ lives,” he says. “Adding various data sources, like those in the dementia studies, will help us do that in a more comprehensive way than ever before.

“The UAS promises to provide an unparalleled resource for researchers tackling inequality,” he adds.