Enabling Tech: Impact of diagnosis (Milestone 11.G)
In Progress
Timeline Start - End
2021 - 2024Research Implementation Area
Enabling Technologies and Disease MonitoringLaunch programs on impact of diagnosis on individuals and families, to include individual response and social impacts.
Success Criteria
- Evaluate the impact of dementia diagnosis, including the range of terms in clinical use and the perceived social stigma, on self-perceptions, depression, anxiety, social isolation, inter-personal relationships, quality of life, and subsequent care for persons living with dementia.
Summary of Key Accomplishments
NIA issued a funding opportunity that focuses on understanding the relationships between persons living with dementia, clinicians, and their care partners and how they communicate with each other during clinical visits to evaluate the implications for decision-making, health, and well-being. In 2021, an NIA-supported expert meeting was held that addressed behavioral and social science research questions prompted by the use of biomarkers and other measures (e.g., cognitive, digital/sensor data) for pre-clinical AD/ADRD diagnosis, including the personal, social, ethical, legal, economic, health equity, and healthcare implications for individuals and their families; the impact of disclosure of preclinical diagnosis on identity and self-concept, study partners and interpersonal relationships; interactions with the healthcare system, participation in the workforce, and other outcomes. It also addressed the implications of preclinical diagnosis of AD/ADRD for the design and conduct of AD/ADRD prevention research.
The key accomplishments summary is current as of March 2022.
Accomplishments/Implementation Activities
Funding Initiatives
- PAR-15-348: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01)
- PAR-18-027: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01 Clinical Trial Optional) (Reissue of PAR-15-348)
- RFA-MH-22-135: Social Disconnection and Suicide Risk in Late Life (R01)
- RFA-MH-22-136: Social Disconnection and Suicide Risk in Late Life (R21)
- RFA-AG-22-020: Triadic Interactions in Clinical Encounters Involving People with Alzheimer's Disease and Alzheimer's Disease-Related Dementias (AD/ADRD), Clinicians, and Care Partners (R01)
Research Programs and Resources
- Caregivers’ Reactions and Experience: Imaging Dementia Evidence for Amyloid Scanning CARE IDEAS
- Webinar on Stigma and Dementia from Shana Stites, a trainee at the Penn ADRC
- 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers