Millions of people are living with dementia in the United States and globally. To live well with dementia, people need care, services, and supports that reflect their values and preferences, build on their strengths and abilities, promote well-being, and address needs that evolve as cognitive impairment deepens. Persons living with dementia co-manage their care with or rely on the support of a wide range of care partners and caregivers, including spouses, other family members and friends, and direct care workers in homes or residential care settings. While dementia care has improved since the 1970s, many individuals still lack access to high-quality care and are not living as well as they might. Disadvantaged groups, especially racial and ethnic minorities, still face challenges in access to care, services, and supports, due to deep and persistent inequities. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward examines the complex body of evidence on dementia care and informs decision making about which interventions are ready to be broadly disseminated and implemented. It also offers a blueprint to guide future research using rigorous, cutting-edge methods that are inclusive, equitable, and yield critical information for real-world implementation, toward the ultimate goal of better supporting persons living with dementia and their care partners and caregivers in living as well as possible.

Contents

• The National Academies of SCIENCES • ENGINEERING • MEDICINE
• COMMITTEE ON CARE INTERVENTIONS FOR INDIVIDUALS WITH DEMENTIA AND THEIR CAREGIVERS
• REVIEWERS
• PROLOGUE
• PREFACE
• ACKNOWLEDGMENTS
• SUMMARY
  • ASSESSING THE STATE OF THE EVIDENCE
  • MOVING TOWARD BETTER DEMENTIA CARE, SERVICES, AND SUPPORTS
  • INTERVENTIONS READY FOR IMPLEMENTATION IN REAL-WORLD SETTINGS WITH MONITORING, EVALUATION, QUALITY IMPROVEMENT, AND INFORMATION SHARING
  • THE STATE OF THE EVIDENCE FOR OTHER DEMENTIA CARE INTERVENTIONS: GAPS AND OPPORTUNITIES
  • A BLUEPRINT FOR FUTURE RESEARCH
• 1. INTRODUCTION
  • STUDY CHARGE AND SCOPE
  • METHODS
  • OTHER RELATED INITIATIVES
  • REPORT ORGANIZATION
  • REFERENCES
• 2. MOVING TOWARD BETTER DEMENTIA CARE, SERVICES, AND SUPPORTS
  • LIVING WELL WITH DEMENTIA
  • EVOLUTION OF THE UNDERSTANDING OF DEMENTIA AND DEMENTIA CARE
  • GUIDING PRINCIPLES AND CORE COMPONENTS OF DEMENTIA CARE, SERVICES, AND SUPPORTS
  • REFERENCES
• 3. COMPLEXITY OF SYSTEMS FOR DEMENTIA CARE, SERVICES, AND SUPPORTS
  • A MULTILEVEL FRAMEWORK FOR CARE INTERVENTIONS FOR PERSONS LIVING WITH DEMENTIA AND THEIR CARE PARTNERS AND CAREGIVERS
  • COMPLEXITY OF DEMENTIA CARE INTERVENTIONS AND IMPLICATIONS FOR ASSESSING THE EVIDENCE
  • CONCLUSION
  • REFERENCES
• 4. MAKING DECISIONS ABOUT IMPLEMENTATION
  • APPLYING IMPLEMENTATION SCIENCE
  • UNDERSTANDING DEMAND: STAKEHOLDER PERSPECTIVES ON DECISION MAKING
  • CONCLUSIONS
  • REFERENCES
• 5. ASSESSING THE CURRENT STATE OF EVIDENCE
  • INTERVENTIONS READY FOR IMPLEMENTATION IN REAL-WORLD SETTINGS WITH MONITORING, EVALUATION, QUALITY IMPROVEMENT, AND INFORMATION SHARING
  • IMPROVING AND EXPANDING THE EVIDENCE BASE FOR DEMENTIA CARE INTERVENTIONS: GAPS AND OPPORTUNITIES
  • REFERENCES
• 6. A BLUEPRINT FOR FUTURE RESEARCH
  • METHODOLOGICAL IMPROVEMENTS
  • PRIORITIZING INCLUSIVE RESEARCH
  • ASSESSING REAL-WORLD EFFECTIVENESS
  • RECOMMENDATIONS
  • FINAL THOUGHTS
  • REFERENCES
• APPENDIX A. AGENCY FOR HEALTHCARE RESEARCH AND QUALITY SYSTEMATIC REVIEW AND INCLUSION CRITERIA
• APPENDIX B. PUBLIC MEETING AGENDAS
• APPENDIX C. BIOGRAPHICAL SKETCHES OF COMMITTEE MEMBERS AND STAFF

Suggested citation:

National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the challenge of caring for persons living with dementia and their care partners and caregivers: A way forward. Washington, DC: The National Academies Press. https://doi.org/10.17226/26026.

Digital Object Identifier: https://doi.org/10.17226/26026

Library of Congress Control Number: 2021932470

Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.

Printed in the United States of America

Cover credit: Original art reproduced with permission from Lenny Larson, who is living with dementia in Seattle, Washington.