About the Special Report

Abstract

This special report is the major product of a grant-funded Hastings Center research project, codirected by Nancy Berlinger and Mildred Z. Solomon, that began with a set of questions about decision-making by individuals facing the dementia trajectory. These questions were explored through multidisciplinary discussions held during the project's research phase, from 2019 to 2021. The landscape review in this report responds to these questions in a format designed to support discussion within professional societies. Other essays consider how familiar narratives, practices, and policies could be improved to support better lives for people living with dementia and for dementia caregivers.

This report speaks to the concerns of the practitioner or team in primary care, long-term care, or hospice that is responsible for the care of patients facing dementia. These practitioners often work outside of hospitals and have limited opportunities for ethical reflection on challenging cases related to dementia. We aim for this report to be useful to these practitioners and also to research communities by drawing attention to understudied topics.

Berlinger and Solomon coedited this report with Emily A. Largent and Mara Buchbinder. The four of them and Cindy L. Cain, Barak Gaster, Jane Lowers, Thaddeus M. Pope, Timothy E. Quill, and Matthew K. Wynia each coauthored one or more papers in the report. The authors and editors of this report (see the “Editors and Authors” section for brief biographies) are solely responsible for the content of the papers and for the recommendations, which are consolidated from the papers.

The authors and editors are grateful to the anonymous peer reviewers of this report and to these colleagues who participated in in-person and videoconference discussions during the project's research phase: Peggy Battin, Dena Davis, Kate de Medeiros, Chris Gastmans, Adira Hulkower, Jason Karlawish, Eva Kittay, Joanne Lynn, Paul Menzel, Debjani Mukherjee, Tia Powell, Ben Sarbey, Katie Savin, Helene Starks, Janelle Taylor, Ross Upshur, and Liz Weingast.

Sana Baban, Isabel Bolo, Bethany Brumbaugh, Aashna Lal, and Briana Lopez-Patino supported this research as project manager–research assistants. Emma Clark and Lauren Schuck served as project interns.

This special report was made possible by the visionary support of The Robert W. Wilson Charitable Trust, which has generously supported The Hastings Center's research on bioethics for aging societies since 2016. It is dedicated to the memory of Robert W. Wilson. Bob gave great thought to the consequences of aging and illness, and to his own death. The questions he faced as an older adult are some of humanity's deepest questions. Robert Wilson's own story has inspired our work; his philanthropy made this work possible.