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Introduction¹

The Alzheimer’s Association estimates that 6.5 million Americans age 65 and older (10.7 percent) have Alzheimer’s disease in 2022, with related dementias affecting an additional 2 to 3 million individuals. Prevalence is projected to double by 2060 (Alzheimer’s Association, 2022). Patients diagnosed with Alzheimer’s disease and related dementias (ADRD) rely on family members, their community, and the health care system for progressively increasing support over the course of their disease. These people receive care through a frequently siloed health care system across hospitals, nursing homes, ambulatory care settings, and long-term care settings, as well as community- and home-based care. As the number of people living with a diagnosis of ADRD continues to grow, so does the need to provide better support for these people and their caregivers.

Evidence-based, high-quality care can enhance the quality of life for both individuals living with ADRD and their caregivers. It also can decrease the likelihood of adverse events, such as falls, hospital-acquired infections, and hospital-induced delirium that have the potential to exacerbate disease progression. The advent of payment policies, such as accountable care organiza-

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¹ The planning committee’s role was limited to planning the workshop, and the Proceedings of a Workshop has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants, and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

tions (ACOs) have led to hospitals and health care systems having a financial interest in promoting quality care for people living with ADRD.

The National Institute on Aging (NIA) Division of Behavioral and Social Research suggests that organizational behavior change will be needed for health care systems to integrate all of the services and supports required to provide high-quality care for people with ADRD. NIA believes payment policy is one of the policy tools that could facilitate the necessary organizational behavior change to improve quality of care for people with ADRD. However, there remains a gap in knowledge about how to effectively use financial incentives to change hospital and health care system organizational behavior in a way that is responsive to the needs of people living with ADRD.

NIA sponsored a workshop hosted by the National Academies of Sciences, Engineering, and Medicine to explore mechanisms to improve the quality of care for people living with ADRD and the potential of innovative payment models to incentivize health care systems to make the necessary systemic changes.² National Academies of Sciences, Engineering, and Medicine project staff from the Board on Health Care Services (HCS) and the Board on Behavioral, Cognitive, and Sensory Sciences (BBCSS) assembled a preliminary working group that consisted of experts in the pertinent fields of study to determine the scope of the workshop and identify key topics to be addressed at the workshop. A separate planning committee that included several members of the preliminary working group developed the agenda for workshop sessions, selected and invited speakers, moderated panel discussions, and gave presentations. The hybrid workshop was held concurrently at the National Academy of Sciences Building in Washington, D.C., and online on May 23–24, 2022. The workshop convened a diverse array of experts in fields including nursing, geriatrics, health care economics, health care services research, quality measurement, social work, medical ethics, law, health care finance, and health care policy. Participants came from a variety of settings, including academic research institutions, government agencies, nonpartisan research foundations, and medical care centers. The workshop was open to the public. The recorded webcast has been archived online.³

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² See https://www.nationalacademies.org/our-work/mechanisms-for-organizational-behavior-change-to-address-the-needs-of-people-living-with-alzheimers-disease-and-related-dementias-a-workshop (accessed September 28, 2022).

³ See https://www.nationalacademies.org/event/05-23-2022/mechanisms-for-organizational-behavior-change-to-address-the-needs-of-people-living-with-alzheimers-disease-and-related-dementias-a-workshop#sectionWebFriendly (accessed September 28, 2022).

ORGANIZATION OF THE PROCEEDINGS

This workshop proceedings was developed by rapporteurs based on recordings, transcripts, and slides from the workshop. It represents a high-level summary of the presentations and discussions. This proceedings document is divided into seven chapters that reflect the keynote presentations, each of the four workshop sessions, and the final panel discussion, which included closing reflections. Box 1 is the rapporteurs’ list of summarized points made by individual identified speakers. The list of references is in Appendix A, the workshop statement of task is in Appendix B, and the workshop agenda is in Appendix C. The biographies of workshop planning committee members and invited speakers can be found in Appendix D, and a list of acronyms and abbreviations can be found in Appendix E.

BACKGROUND

Richard Frank, director of the University of Southern California-Brookings Schaeffer Initiative on Health Policy, offered a brief description of the central goal of the workshop as described in the statement of task. The workshop seeks to gain insight from various experts to develop an understanding of how various tools could be applied to facilitate improvements in care delivery and support for people living with ADRD as well as their caregivers and families.

Melinda Kelley, acting deputy director of NIA, and Theresa Kim, social and behavioral science program official at NIA, offered opening remarks that described the relevance of this workshop to NIA. Kelley noted that the breadth of topics that will be discussed during the workshop, such as evidence regarding defining quality care for people living with ADRD; identification of gaps in data for payment models; and the application of social sciences toward developing payment models that promote high-quality care will provide NIA with valuable insight as it considers future research priorities. Kim explained that the Division of Behavioral and Social Research (BSR), an extramural division of NIA, supports social, behavioral, and economic research on the processes of aging at individual and societal levels. BSR receives input from experts, including the National Advisory Council on Aging (NACA), which recommends future directions every 5 years. This workshop is relevant to several of NACA’s 2019 recommendations, including supporting research on individual and organizational change and research on improving care for patients with ADRD and their caregivers. Kim noted that while many health care, public health, and social service systems are redesigning their programs and processes to address the current siloed nature of care and service delivery, there remains a gap in understanding how to reliably implement organizational change initiatives to better serve people living with ADRD. She explained that NIA hopes to use what is learned at this workshop to guide the development of research into policy options to incentivize improved care and support for people with ADRD and their caregivers.