Decadal Survey of Behavioral and Social Science Research on Alzheimer's Disease and Alzheimer's Disease-Related Dementias

The National Academies of Sciences, Engineering, and Medicine convened a committee to conduct a decadal survey focusing on developing a research agenda for the next decade in the behavioral and social sciences as it relates to Alzheimer’s disease (AD) and Alzheimer’s disease-related dementias (ADRD). Drawing on extensive input from the scientific community and other stakeholders, the committee will assess the role of the social and behavioral sciences (including data sources and other resources) in reducing the burden of dementia.

The following areas are being reviewed by the committee:

1. research using the methods of behavioral and social sciences on the burden of AD/ADRD on individuals, families, medical and long-term care systems;
2. challenges associated with AD/ADRD care;
3. intervention development for persons with dementia and their caregivers at different stages of illness;
4. cognitive and AD/ADRD epidemiology;
5. AD/ADRD prevention, leveraging basic and translational research on behavioral and social pathways to AD/ADRD and cognitive decline;
6. detection of AD/ADRD-related change;
7. the causes and consequences of AD/ADRD health disparities; and
8. AD/ADRD data infrastructure needs.

The Decadal committee hosted four workshops on the following topics:

1. Workshop on ADRD Experience and Caregiver, Epidemiology, and Models of Care
2. Workshop on Challenging Questions about Epidemiology, Care, and Caregiving for People with Alzheimer's Disease and Related Dementias and Their Families
3. Workshop on Nursing Home, Hospice, and Palliative Care for Individuals with Later-Stage Dementia Making Health Systems more Responsive to Dementia
4. Workshop on Quality of Life Individuals with Dementia Prevention Elder Abuse and Fostering Living Well After a Dementia Diagnosis

The final report will include recommendations for an agenda for behavioral and social science research on AD/ADRD during the next decade (i.e., 2020-2030). You can find more information on the survey, workshop proceedings, and video recordings on the Decadal Survey website.