Enabling Tech: Impact of diagnosis (Milestone 11.G)
Timeline Start - End2021 - 2024
Research Implementation AreaEnabling Technologies and Disease Monitoring
Launch programs on impact of diagnosis on individuals and families, to include individual response and social impacts.
- 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.
- 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)
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