New Alzheimer’s disease treatments are available now and more are on the horizon, but will those who need them most actually use them? New research project aims to understand the factors that drive a high-risk population to seek these treatments.
The emergence of disease-modifying treatments for Alzheimer’s disease (AD) marks a major milestone in the fight against dementia. These therapies, designed to slow disease progression, have the potential to reshape treatment and improve the lives of millions. But their success in this fight depends on more than just scientific breakthroughs. Their impact will ultimately be determined by whether people—particularly those most at risk—actually use them.
A new research initiative led by Julie Zissimopoulos (University of Southern California) and David Bennett (Rush University) is tackling this question by exploring factors that support or hinder the use of AD therapeutics, particularly in non-Hispanic Black communities. Despite having a higher risk of developing AD, Black adults in the U.S. are diagnosed later in the disease’s progression, are less likely to receive care by a dementia specialist or symptomatic therapies for dementia, and remain underrepresented in clinical trials. The reasons underlying these disparities are complex, tied to factors such as historical distrust of the healthcare system, barriers to healthcare access, concerns over treatment cost and side effects. These same factors will likely impact decisions on whether to use these novel AD treatments.
To better understand these challenges, the research team conducted a series of focus groups with Black adults over 60 without cognitive impairments. These volunteer participants provided valuable insights into the real-world barriers and concerns that influence healthcare decision-making.
Participants expressed strong interest in learning more about AD and maintaining brain health but raised critical concerns regarding potential side effects, ethical considerations, quality of life risks and the financial costs associated with AD treatments. These conversations also highlighted distrust in medical research within Black communities, shaped by historical instances of unethical medical practices. Participants emphasized the need for more inclusive, transparent research efforts and expressed a desire for better representation in clinical trials.
These insights are informing new data collection on demand for AD therapies in a nationally representative sample. Data generated from this project will be integrated into the United States Cost of Dementia Model (USCDM), a dynamic microsimulation model designed to estimate the societal cost of dementia over time. By incorporating data from diverse research studies, including those focused on therapeutic advancements, the USCDM simulates how the adoption of new therapies will affect healthcare spending as well as other economic impacts on families and society.
As new therapies emerge, bridging the gap between innovation and real-world impact is essential. Breakthroughs in dementia treatments will have the greatest impact on reducing the health and economic consequences of AD if all persons have the information, access and support they need to make informed choices about their use of new therapies. Engaging at-risk communities and incorporating insights gained can guide the information, clinical trial recruitment and healthcare access strategies that are critical to reducing the impact of AD.
Author Information
Julie Zissimopoulos, PhD, USC Schaeffer Center for Health Policy & Economics; David Bennett, MD, Rush Alzheimer’s Disease Center; Bryan James, PhD, Rush Alzheimer’s Disease Center; Crystal Glover, PhD, UCI Institute for Memory Impairments and Neurological Disorders; and Cheyenne Parson, Rush Alzheimer’s Disease Center.
