Studying early signs of dementia in younger, more diverse patient population

By Sarah Avery and Lindsay Kenton

The newest NIH Alzheimer’s Disease Research Center (ADRC)—a collaboration established in Fall 2021 between Duke and the University of North Carolina (UNC)—is focused on identifying age-related changes across the lifespan that impact the development, progression, and experience of Alzheimer’s disease and related dementias. The center will also identify how factors that arise in early- and mid-life contribute to racial, ethnic, and geographic disparities in dementia.

Recognized as one of the NIH Centers of Excellence, the center is one of 33 ADRCs nationwide, and funding for this project is expected to total $14.8 million over the next five years. The Duke/UNC center is part of a unique collaboration between the two universities that began in 2019.

“The new ADRC unites two extraordinary institutions in the effort to prevent, delay and treat Alzheimer’s by focusing on the known risk factors, including race, age, female sex and genetic predisposition,” says Rich O’Brien, MD, PhD, Department of Neurology chair. “We'll also greatly advance our understanding of the brain and how it changes across the lifespan."

More about the study

A central initiative of the Duke/UNC is a study recruiting and following people from North Carolina who either have dementia or may be at risk for developing dementia later in life. This group of study participants will be younger and more diverse than many of the other cohorts followed by ADRCs around the country, with adults ages 45 to 80 years old and some as young as 25, many of whom have normal cognition. By identifying these biological processes across the lifespan, researchers may be able to develop tools for earlier diagnosis and determine new targets for treatments that prevent or delay onset.

“A lot of data are looking at people who already have disease, but it’s become increasingly clear that we may learn more if we start earlier,” says co-principal investigator Heather Whitson, MD, director of the Duke Center for the Study of Aging and Human Development. “It’s important to start recruiting people who are in early to middle adulthood and have a major risk factor for developing Alzheimer’s or dementia in the future.”

The study plans to enroll 540 participants over the next five years and will assess their cognition regularly as they age and determine their genetic risk factors. Participants will undergo an MRI to get a baseline image of their brain and will do cognitive and sensory testing every year to assess for biomarkers of Alzheimer’s disease.

“Amyloid, a protein involved in changes in the brain related to Alzheimer’s disease, can be elevated 10 to 20 years before symptoms begin, and the risk for dementia may start to increase at age 45,” says Kim G. Johnson, MD, chief of the Duke Division of Memory Disorders and co-leader of the ADRC’s Clinical Core. Researchers will also complete sensory measurements for vision, hearing, gait speed, and smell—often one of the first senses to be affected with memory disorders, Johnson adds.  

A younger cohort of 120 people ages 25 to 44 will complete a one-time evaluation, while an older cohort of 420 people ages 45 to 80 will participate in a longitudinal study of aging and cognition.  Because women are affected by Alzheimer’s disease in greater numbers than men, Duke researchers are also planning a sub-study of women in the menopause transition to determine contributors to the development of cognitive symptoms during that period of time, Johnson notes.

Increasing research opportunities, clinical trial participation among underrepresented groups

Another key element of the Duke/UNC center is its mission to increase research and clinical trial participation among underrepresented groups. The risk of developing Alzheimer’s disease is higher among both Black and Latino individuals compared to white individuals, yet research studies disproportionately include white participants.

Johnson says the goal is to include and partner with Black participants so they comprise 20% of the longitudinal and young cohorts.  Many participants will be recruited from the Duke Memory Disorders Clinic.

“The advantage of referring patients to the Duke Memory Disorders Clinic is that they have access to clinical trial options for treatments and are able to particulate in other research projects at Duke to find the cause and potentially the cure for Alzheimer’s disease,” says Johnson. “Our clinic has a very strong research mission that is aligned with the ADRC, and we want to make people with normal cognition, mild cognitive impairment, and Alzheimer's disease aware of all opportunities available at Duke to participate and make a difference.”

(This article originally appeared in Clinical Practice Today, a free publication from Duke Health. Read the article in its original context, or other articles like it, here).

As part of the network of ADRCs, the Duke/UNC center will share important research with other ADRCs throughout the country, including data, biological samples, genetic information, therapeutic targets, and imaging and biomarkers, helping scientists across the country and the world learn more about dementia at a faster pace. 

“At Duke, many of our researchers are investigating inflammation and infection as possible causes for Alzheimer’s disease as well as genetic risks and certain family history features,” Johnson explains. “By soliciting the Duke/UNC ADRC for research subjects, researchers can use information from our cohorts in their studies and we can further the research missions of individual researchers at Duke and UNC.”

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