A New Framework for Dementia Nomenclature.

Importance: Nomenclature in the field of neurodegenerative diseases presents a challenging problem. Inconsistent use of terms such as Alzheimer disease and dementia has compromised progress in clinical care, research, and development of therapeutics. Dementia-associated stigma further contributes to inconsistent and imprecise language.

Disclosing Individual Results in Dementia Research: A Proposed Study Participant's Bill of Rights.

This Study Participant's Bill of Rights is a call to action for researchers in Alzheimer's disease and related dementias (ADRD) to proactively design clinical studies that provide the option for research participants to learn their individual research results if they choose, and in a manner that ensures study integrity. This Bill of Rights was crafted by a committee of study participants, care partners, representatives of dementia advocacy organizations, and other stakeholders in dementia research for the Advisory Group on Risk Education for Dementia (AGREEDementia). The framework developed by the Multi-Regional Clinical Trials (MRCT) Return of Individual Research Results provides a useful context for researchers to plan their studies and disclosure.

Impact of dementia: Health disparities, population trends, care interventions, and economic costs.

Introduction: The dementia experience is not a monolithic phenomenon-and while core elements of dementia are considered universal-people living with dementia experience the disorder differently. Understanding the patterning of Alzheimer's disease and related dementias (ADRD) in the population with regards to incidence, risk factors, impacts on dementia care, and economic costs associated with ADRD can provide clues to target risk and protective factors for all populations as well as addressing health disparities.

Methods: We discuss information presented at the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, Theme 1: Impact of Dementia.

Contributions of Persons Living With Dementia to Scientific Research Meetings. Results From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers.

Objective: Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group.

Methods: The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations.

The Experiences of Persons Living with Dementia Planning for a Dementia Research Meeting. Lessons Learned From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers.

Objective: A stakeholder group for persons living with dementia (PLWD) was convened to support the work of a major US dementia research meeting. The objectives of this examination are to present the steps used to implement the Group and guidance for both PLWD and researchers for partnering on research conference planning and participation.

Methods: PLWD met monthly to provide input into the agenda for the 2017 Research Summit on Dementia Care and some Group members also presented at the Summit.