Behavioral and Social Research on Alzheimer's Disease & Alzheimer's Disease Related Dementias

NIA and the National Plan to Address Alzheimer's Disease

In January 2011, the National Alzheimer’s Project Act was signed into law, calling for a coordinated national plan to accelerate research on AD/ADRD and to provide better clinical care for persons living with dementia and their care partners.

The Advisory Council on Alzheimer’s Research, Care, and Services established the National Plan to Address Alzheimer’s Disease, which set five ambitious goals to both prevent future cases of AD/ADRD and better meet the needs of persons living with dementia and their families. Learn more about NIA’s commitment to the National Plan to Address AD/ADRD.

AD+ADRD Research Implementation Milestones

Informed by the National Plan and engagement with the research community and public through the AD/ADRD Research Summits, NIA developed the AD+ADRD Research Implementation Milestones. These milestones span basic, translational, clinical, and health services research.

In 2021, BSR announced 5 new AD/ADRD Care Research Implementation Milestones. Details can be found on our BSR news page.

BSR’s research covers milestones in research on care and caregiver support; population studies and precision medicine; non-pharmacologic interventions; research on disease mechanisms; biomarkers; enabling technologies and disease monitoring; recruitment and citizen engagement; trial design; data sharing and reproducibility; translational tools, infrastructure, and capabilities; and public-private partnerships. Visit our research area subpages to see how BSR research supports AD+ADRD research Implementation Milestones.

International Alzheimer's and Related Dementias Research Portfolio

The International Alzheimer’s and Related Dementias Research Portfolio (IADRP) is a database that captures AD/ADRD research projects by public and private funders both in the United States and throughout the world. IADRP allows for coordination of research, leverage resources, avoid duplication, and identify new research opportunities. Each project is categorized using Common Alzheimer’s and Related Dementias Research Ontology (CADRO) to organize and compare research projects using common terminology.

2023 National Research Summit on Care, Services, and Supports for Persons Living with Dementia and Their Care Partners/Caregivers

The 2023 Dementia Care Summit built on progress of the previous Summits to review research progress, highlight innovative and promising research, and identify remaining unmet research needs with input from the research community, persons living with dementia (PLWD) and their care partners, those who provide healthcare or services and supports to persons living with dementia, and other stakeholders. Lived Experience and Stakeholders panels were convened to solicit feedback both from persons living with dementia and their care partners/caregivers, as well as from a variety of formal dementia care and caregiving stakeholders, including direct care workers, health services providers, patient advocates, payer representatives, and researchers.

Visit the 2023 Dementia Care Summit webpage to see the agenda, watch the meeting recordings, and view the gaps & opportunities as they become available.

AD/ADRD Clinical Trials

BSR currently supports 195 AD/ADRD clinical trials and pilot interventions. These include:

• Interventions to promote cognitive resilience and prevent or remediate AD/ADRD and cognitive decline such as cognitive training, exercise, diet, stress reduction, and social engagement;
• Non-pharmacological interventions to improve function in people living with AD/ADRD and/or address cognitive and behavioral symptoms, including assistive technology;
• Dementia care interventions in health systems and in home and community-based settings, including long-term services and supports and end-of-life care to improve the health and well-being of people living with dementia;
• Care partner/caregiver focused interventions to improve health and well-being, provide care partner tools and training, technology-assisted monitoring, and support communication and decision making;
• Interventions to test tools for diagnosis and early detection of AD/ADRD.

NIA encourages investigators to consult the NIH Stage Model for Behavioral Intervention Development and resources developed by the NIH Science of Behavior Change when considering the development of interventions focused on individual or institutional behavior change for AD/ADRD prevention, treatment, and care.

Recruitment and retention of underrepresented minorities in scientific and clinical research, including non-pharmacological intervention studies for PLWD, represents a significant and ongoing challenge. NIA published a National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research, which places a heavy emphasis on the importance of researching, developing, and implementing methods to increase clinical research participation of diverse individuals. BSR has a role to play in supporting what the report calls an “applied science of recruitment” to understand and address disparities in clinical research and intervention development research participation. Rigorous methods and frameworks are needed to tease out the independent and intersectional contributions of race, ethnicity, gender, rural/urban, and socioeconomic variables to health disparities, as well as other dimensions of inequality including sexual and gender minorities and those living alone. Inclusion of more diverse samples in AD/ADRD research can improve our understanding of the “active ingredients” of non-pharmacological interventions.

NIA has recently launched it's Clinical Research Operations and Management System (CROMS) and published a Notice in the NIH Guide, in part to address these challenges of diverse recruitment and retention in AD/ADRD clinical research. CROMS will enable NIA to identify enrollment challenges in its funded studies and to ensure that NIA-funded trials meet the requirements of NIH inclusion policies.