Zissimopoulos participated on the committee tasked with developing the research agenda
A new report from the National Academies of Sciences, Engineering, and Medicine focuses on reducing the burden and impact of dementia, providing a broad research roadmap for the behavioral and social sciences over the next ten years. Julie Zissimopoulos, co-director of the Aging and Cognition Program at the Schaeffer Center and a principal investigator for two NIH-funded research centers focused on Alzheimer’s, participated on the committee that wrote the report.
“We have been waiting decades for breakthrough treatment or cure, but the social sciences have an important role to play in reducing the burden of this disease now,” said Zissimopoulos. “From barriers to care to population-level impacts to comprehensive support systems, there are many aspects of this disease that society needs to grapple with if we are going to provide the best support for patients, caregivers and families.”
Alzheimer’s Disease Impacts Almost Everyone in Some Way
More than 6 million people in the United States are currently living with Alzheimer’s disease and by 2060 the patient population is predicted to more than double, to 14 million. With no cure and few treatment options, Alzheimer’s is a devastating diagnosis for patients, as well as caregivers, families and communities. The disease is also a significant strain for the healthcare system. All told, the economic burden of the disease is estimated to increase to $1.5 trillion over the next 30 years.
Given the rapidly growing and increasingly diverse population living with dementia as well as the limited treatment options, investing in research across a range of social science fields is increasingly important to reduce the health, social and economic consequences of the disease.
“Alzheimer’s is an intractable problem effecting everyone and all aspects of society. To identify creative tools and solutions, we need researchers from across the social sciences,” explains Zissimopoulos. “At the Schaeffer Center, we are fostering interdisciplinary research in this area to help solve these complex issues.”
The Schaeffer Center is home to two NIH-funded research centers focused on Alzheimer’s: The Minority Aging Health Economics Research Center at USC (AD-RCMAR) and the Center for Advancing Sociodemographic and Economic Study of Alzheimer’s Disease (CeASE-ADRD). Both programs are advancing innovative social science research on dementia with the goal of building a diverse, global network of social science researchers in the field.
Leverage the Social Sciences to Make Progress
The NAS committee was comprised of experts from across the social sciences, including sociology, epidemiology, biostatistics, public health, economics, geriatric medicine, psychology, psychiatry, neurology, bioethics, demography and public policy. Zissimopoulos says this broad range of perspectives allowed them to analyze the issue from multiple vantage points and leverage each discipline’s unique research approaches and methods.
The report recommend the coordination of research to avoid redundant studies. They also emphasized that researchers should take policy and socio-economic implications into account throughout the research process and research and findings be relevant for diverse clinical and community settings. Funders of dementia-related research should incentivize these approaches and others in their guidelines for awarding research grants.
“The report is a comprehensive playbook for funders and new researchers in the area,” said Zissimopoulos.
Key research areas that came out of the report include:
- Understanding risk and preventive factors for dementia.
- Examining the experience of living with dementia, including diagnosis, care, and treatment.
- Identifying the needs of family caregivers.
- Understanding the role of community characteristics in dementia risk and quality of life for people living with dementia and their families.
- Strengthening the role of the health care system and institutions that provide care to people living with dementia.
- Understanding the economic costs of dementia.
- Strengthening data collection and research methodology.
Within these research areas, the report recommends that researchers prioritize improving the lives of people affected by dementia and of their caregivers, rectifying disparities, developing innovations that can improve quality of care and social supports, easing the economic costs of dementia, and pursing advances in researchers’ ability to study dementia.
“We need to act now on these priorities,” said Zissimopoulos. “Fortunately, we can make progress in all of these areas without waiting for new clinical innovations.”
Learn more about the work Zissimopoulos and her colleagues are engaging at the Schaeffer Center here.