The director of the Institute for Health, Health Care Policy, and Aging Research at Rutgers University discussed the reasons behind the lack of real-world dementia studies.
"There are also linguistic and culture issues. We can’t simply use a cognitive measure for one population to another without understanding the implications of that.”
To better understand the needs of the general population, researchers will conduct real-world studies. In the dementia space, the backgrounds of those involved in clinical trials can be very important, due to the ranging levels of genetic risk. Additionally, real-world studies can highlight the needs of those within communities who do not receive or have access to the proper care or same level of care as others.
While these types of studies are crucial, they often come with barriers. One such barrier includes the level of distrust from those within the underrepresented communities, including minority populations, according to XinQi Dong, MD, MPH. Dong, the director of the Institute for Health, Health Care Policy, and Aging Research at Rutgers University, was among a group of dementia experts who recently published a report on improving dementia care interventions, citing the need for research that promotes equity, diversity, and inclusion.
In an interview with NeurologyLive, Dong detailed the challenges in conducting real-world dementia studies. He also harped on the methodical and transparency issues that arise with enrolling such populations.