National Research Summit on 

Care, Services, and Supports for Persons 

with Dementia and Their Caregivers 

Summit Virtual Meeting Series – Summary Report

July 10, July 21, and August 13, 2020 

National Institute on Aging, National Institutes of Health 

National Institute 

on Aging 
 

 

 

 

National Research Summit on Care, 

Services, and Supports for Persons Living 

with Dementia and Their Caregivers 

National Institute on Aging 

National Institutes of Health 

July 10, July 21, and August 13, 2020 

Virtual Summit Series Summary Report 

December 19, 2020 

This meeting summary was prepared by Caroline Sferrazza, Rose Li and Associates, 

Inc., under contract to the National Institute on Aging, Division of Behavioral and 

Social Research (NIA/BSR). The views expressed in this document reflect both 

individual and collective opinions of the meeting participants and not necessarily 

those of NIA/BSR. Review of earlier versions of this summary by the following 

individuals is gratefully acknowledged: María Aranda, Jessica Boten, Malaz 

Boustani, Christopher Callahan, Dana Carluccio, Elena Fazio, Lori Frank, Melissa 

Gerald, Chandra Keller, Katie Maslow, Vincent Mor, Lis Nielsen, Lisa Onken, Joanne Pike, David 

Reuben, Courtney Wallin, and Jennifer Wolff. 
Virtual Summit on Dementia Care July - August 2020 

Table of Contents 

Executive Summary ............................................................................................................... 1 

Summary Report ................................................................................................................... 5 

Background............................................................................................................................................... 5 

Theme Two: Long-Term Services and Supports in Home, Community, and Residential Care Settings for 

Integration, Themes Two and Three: The Present and Future of Integrated Long-Term and Medical 

Setting the Stage ...................................................................................................................................... 7 

Theme One: Impact of Dementia ............................................................................................................. 7 

Persons with Dementia and their Caregivers.........................................................................................11 

Theme Three: Services and Supports in Medical Care Settings for Persons with Dementia .................14 

Care.........................................................................................................................................................16 

Theme Four: Participation of Persons with Dementia and their Caregivers in Research ......................18 

Theme Five: Intervention Research, Dissemination, and Implementation............................................21 

Theme Six: Research Resources, Methods, and Data Infrastructure.....................................................24 

Emerging Topics......................................................................................................................................27 

Conclusion ..............................................................................................................................................29 

Appendix 1: 2020 Summit Research Gaps and Opportunities ............................................... 30 

Theme Two: Long-Term Services and Supports in Home, Community, and Residential Care Settings for 

Integration, Themes Two and Three: The Present and Future of Integrated Long-Term and Medical 

Theme One: Impact of Dementia...........................................................................................................30 

Persons Living with Dementia and their Caregivers...............................................................................31 

Theme Three: Services and Supports in Medical Care Settings for Persons Living with Dementia.......33 

Care.........................................................................................................................................................34 

Theme Four: Participation of Persons with Dementia and their Caregivers in Research ......................35 

Theme Five: Intervention Research, Dissemination, and Implementation............................................36 

Theme Six: Research Resources, Methods, and Data Infrastructure.....................................................37 

Appendix 2: Glossary........................................................................................................... 39 

Appendix 3: Summit Agendas .............................................................................................. 41 

Appendix 4: List of Speakers ................................................................................................ 47 

Summit Steering Committee ..................................................................................................................47 

Research Presenters, Panelists, and Other Speakers.............................................................................47 

Table of Contents Page ii 
 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Executive Summary 

The 2020 National Research Summit on Care, Services, and Supports for Persons Living with 

Dementia (PLWD) and Their Caregivers convened for three virtual sessions in July and August 

2020 to identify gaps and opportunities in dementia-related research.

1 The Summit 

summarized the current state of dementia care and care partner research as well as progress 

made since the 2017 National Summit on Care, Services, and Supports for PLWD and Their 

Caregivers. 

The goal of the Summit was to bring together individuals with a variety of backgrounds to 

identify evidence-based programs, strategies, approaches, and other research that can be used 

to improve the care, services, and supports of persons living with Alzheimer’s disease and 

Alzheimer’s disease-related dementias (AD/ADRD) and their care partners. The 2020 Summit 

Virtual Meeting Series and the Request for Information provided opportunities for individuals 

to share perspectives about critical scientific gaps and opportunities for research to help inform 

federal agencies, foundations, and private sector organizations. Individual members of the 

Summit Steering Committee, including academic researchers, PLWD, care partners, and other 

stakeholders, contributed to the development of research gaps and opportunities that were 

organized into six broad themes and one integrated theme.

2 These research gaps and 

opportunities—which are enumerated in the scientific highlights of each session as well as in 

Appendix 1—are designed to highlight areas in which new or additional research can inform 

efforts that meaningfully impact the lives of PLWD and their care partners. These six themes 

were broadly organized in consideration of the impacts on PLWD and their care partners and 

the settings in which they receive care (Themes 1-3) and the methodological rigor and impact 

of AD/ADRD care and services research (Themes 4-6). 

For each theme, two co-chairs—an academic researcher and a policy or practice expert in 

dementia care and services—guided presentations and discussion during the Summit. All 

questions submitted for discussion, even those that were not discussed at the Summit itself, 

were reviewed by the group as it revised gaps and opportunities to reflect Summit proceedings. 

Across the themes, five cross-cutting topics were also emphasized: perspectives from PLWD 

and their care partners,

3 health disparities, ethics, technology, and etiologies. These cross1 Visit https://www.nia.nih.gov/2020-dementia-care-summit#Materials to access meeting materials from and 

YouTube recordings of each virtual session. 

2 The research gaps and opportunities do not represent consensus advice, and the Summit Steering Committee is 

not advisory to NIA. Discussion of such input should not be construed to mean these research ideas will lead to 

funding opportunities or other specific agency activity. The research gaps and opportunities suggested by 

members of the Steering Committee may be used at NIA’s discretion to inform new or revise current AD/ADRD 

Research Implementation Milestones, but NIA is under no obligation to do so. 3 Care partner refers to a person with whom the PLWD has a reciprocal relationship who is involved in comanaging the demands of AD/ADRD through such activities as providing emotional support and participating in 

decision-making. The term caregiver can refer to family members, neighbors, friends, fictive kin, or anyone else 

providing unpaid health and function-related assistance to persons living with dementia. For the purposes of this 

Executive Summary Page 1 
 

 

Virtual Summit on Dementia Care July - August 2020 

cutting areas, which were discussed in relation to each theme, highlighted the need for personcentered study designs and outcomes as well as infrastructure-level modifications to the 

dementia care research landscape, with a particular focus on data collection and access. 

The research gaps and opportunities address areas of scientific inquiry that hold promise for 

propelling advances in policy, practice, and care to improve the lives of persons who are 

affected by AD/ADRD and their care partners and encompass a broad swath of topics related to 

care and services. For some areas of scientific inquiry, important knowledge gaps persist 

despite substantial prior research. For example, there is strong evidence of profound disparities 

in dementia care among subpopulations most affected by AD/ADRD. But this evidence base is 

incomplete and new research is needed to explore effects on health and receipt of care in 

subpopulations that are less well understood, such as PLWD with specific types of dementia 

and among those who self-identify as members of sexual and gender minorities and those who 

live alone. Additional research is also needed to better understand heterogeneity, not only 

between subpopulations but within subpopulations, which might affect the scope and 

magnitude of AD/ADRD consequences and inform promising opportunities for intervention. In 

other areas, such as preclinical AD/ADRD, the science is only now emerging but is likely to grow 

in importance as diagnostic tests improve and persons are diagnosed in the absence of clinical 

symptoms. 

Finally, it is important to note that the Summit activities were planned throughout 2019 and 

early 2020, preceding most of the COVID-19 outbreak, for what was originally conceived as an 

in-person March 2020 event. The pandemic and concurrent racial unrest have elevated 

awareness of the importance of identifying and eliminating structural barriers that create and 

propagate disparities in care, services, and supports. These events serve to accentuate the 

importance and timeliness of the research gaps and opportunities. 

Theme One: Impact of Dementia 

Theme co-chairs Dr. María P. Aranda and Ian Kremer moderated presentations and discussion 

related to heterogeneity and trends in the lived experience of dementia. Dr. Rachel Whitmer 

presented first on population trends in AD/ADRD and the importance of embracing a lifecourse 

approach to studying AD/ADRD to account for long-term drivers of disparities between groups. 

Dr. Ladson Hinton gave the second presentation on disparities that permeate the full course of 

dementia care. Dr. Julie Zissimopoulos delivered the final presentation on the economic 

impacts of dementia care. Panelists Cynthia Huling Hummel and Laura Trejo provided 

comments and then joined theme co-chairs and presenters for the Q&A discussion, which 

included disparities and the lived experience of PLWD in dementia care and research. 

Theme Two: Long-Term Services and Supports (LTSS) in Home, Community, and Residential 

Care Settings for PLWD and their Caregivers

Theme co-chairs Dr. Robyn Stone and Dr. Sheryl Zimmerman moderated presentations and 

discussion on the organization, financing, and delivery of LTSS in home, community, and 

report, the term care partner is used throughout for consistency, and its use means care partners and/or 

caregivers. See the glossary in Appendix 2 for more information. 

Executive Summary Page 2 
 

 

 

Virtual Summit on Dementia Care July - August 2020 

residential settings. Dr. Kimberly Van Haitsma presented first on evidence-based personcentered practices for PLWD and their care partners. Dr. Joanne Spetz delivered the second 

presentation on the LTSS workforce. Dr. David Stevenson gave the final presentation on the 

financing and organization of LTSS. Panelists Dr. Alice Bonner and Laurie Scherrer commented 

and then joined theme co-chairs and presenters for the Q&A discussion, which primarily 

focused on workforce considerations and person-centered LTSS care models. 

Theme Three: Services and Supports in Medical Care Settings for PLWD 

Theme co-chairs Dr. Susan Beane and Dr. Christopher Callahan served as the moderators of this 

session, which focused on the organization, financing, and delivery of AD/ADRD medical care 

across the continuum of care. Dr. Joshua Chodosh presented an overview of care components 

in different models of dementia care, the integration of dementia care in primary care settings, 

and issues and challenges to address the care needs of people from underrepresented groups 

and in comparative effectiveness research. Dr. Cynthia Boyd’s presentation focused on the 

complex care needs and challenges in developing evidence-based and patient-centered care 

strategies for PLWD and with multiple other chronic conditions. Dr. Norma Coe delivered the 

final presentation on the direct and indirect costs incurred by unpaid caregivers of PLWD and 

financing the care of PLWD. Panelists Dr. Shari Ling and Dr. George Hennawi provided 

commentary on these presentations and then joined theme co-chairs and presenters for the 

Q&A discussion, which focused on primary care model design and implementation and on 

benefit eligibility. 

Integration of Themes Two and Three: The Present and Future of Integrated Long-Term and 

Medical Care 

Integration theme co-chairs Dr. Christopher Callahan and Dr. Robyn Stone moderated 

presentations and discussion on topics at the intersection of themes 2 and 3. Kerry Branick 

delivered a presentation on the integration of LTSS, medical care, and financing. Dr. Bruce Leff 

delivered a second presentation on successful approaches to integrating LTSS and medical care. 

Theme co-chairs and presenters participated in the Q&A discussion, which centered on the 

interaction of care implementation strategies and payment models. 

Theme Four: Participation of PLWD and their Caregivers in Research 

After recorded welcoming remarks from theme co-chair Dr. Jason Karlawish, his co-chair Dr. 

Lori Frank moderated presentations and discussion, which focused on the engagement and 

involvement of PLWD and their care partners as partners in research. Dr. Lee Jennings’s 

presentation addressed the importance of person-defined outcomes in dementia care research. 

Dr. Ronald Petersen’s presentation considered the impact and implications of nomenclature for 

research participation from the perspective of clinicians and patients. Dr. Tabassum Majid’s 

presentation covered the spectrum of patient engagement and strategies to engage PLWD and 

their care partners in research. Panelists Dr. Andrea Gilmore-Bykovskyi and Dr. Lonni Schicker 

provided commentary on the presentations and then joined the theme co-chair and speakers 

for the Q&A discussion, which highlighted challenges and opportunities for the engagement of 

PLWD and their care partners in research as well as dementia-specific considerations for data 

sources. 

Executive Summary Page 3 
 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Theme Five: Intervention Research, Dissemination, and Implementation 

Theme co-chairs Dr. Michael Monson and Dr. Malaz Boustani moderated presentations and 

discussion on methods to improve intervention research, dissemination, and implementation. 

Dr. Jürgen Unützer presented first on an evidence-based depression practice model that may 

serve as an exemplar for successful implementation and dissemination of dementia care 

programs. Dr. Luci Leykum gave the second presentation on current challenges in 

implementation science. Dr. Elizabeth A. McGlynn delivered the third presentation on how 

learning health systems might facilitate research, implementation, and improvement of 

dementia care models. Panelist Dr. Lisa Onken provided prepared remarks and then joined 

theme co-chairs and presenters for the Q&A discussion, which included keys to successful 

implementation of interventions and data needs. 

Theme Six: Research Resources, Methods, and Data Infrastructure 

Theme co-chairs Dr. Joanne Pike and Dr. Vincent Mor moderated presentations and discussion 

on methods, data, and processes needed to facilitate dementia care research. Dr. Julie P.W. 

Bynum presented first on the identification of PLWD for research. Dr. Thomas G. Travison 

delivered the second presentation on opportunities for embedded pragmatic clinical trials for 

PLWD and their care partners. Dr. David Wendler gave the final presentation on ethical 

considerations surrounding consent in dementia care research. Panelists Joe Chung, Dr. Craig 

W. Thomas, and Dr. Maggi C. Miller provided comments and then joined theme co-chairs and 

presenters for the Q&A discussion, which highlighted consent and engagement from PLWD and 

care partners as well as questions about data sources and infrastructure. 

Emerging Topics 

Session co-chairs Dr. David Reuben and Dr. Jennifer Wolff moderated presentations and a 

discussion on emerging topics in dementia care research. Dr. Joan K. Monin presented first on 

the emotional functioning and experience of PLWD and care partners. Dr. Jared F. Benge 

presented on the concept of technological reserve and technology-based supports for PLWD. 

Dr. Christine Cassel gave the final presentation on the identification of preclinical-stage 

dementia. Panelists Venoreen Browne-Boatswain and Michael R. Bellville provided comments 

and then joined theme co-chairs and presenters for the Q&A and moderated discussion, which 

included discussion of the value of PLWD and care partner input on interventions and how 

cultural sensitivity can mediate the impact of dementia care strategies. 

Executive Summary Page 4 
 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Summary Report 

Background 

The 2020 National Research Summit on Care, Services, and Supports for Persons Living with 

Dementia (PLWD) and Their Caregivers, hosted by the National Institute on Aging (NIA), was 

convened to identify gaps and opportunities to inform dementia-related research priorities of 

federal agencies, foundations, and private sector organizations. The Summit sought to expand 

upon what was learned in the 2017 National Research Summit on Care, Services, and Supports 

for Persons with Dementia and Their Caregivers and spark new, innovative ideas from multiple 

stakeholder groups, including those living with dementia, care partners, researchers, providers, 

and advocacy communities. 

The 2020 Summit brought together individuals with a variety of backgrounds to identify 

evidence-based programs, strategies, approaches, and other research that can be used to 

improve the care, services, and supports of persons living with Alzheimer’s disease and 

Alzheimer’s disease-related dementias (AD/ADRD) and their care partners. The process 

provided opportunities for individuals to share perspectives about critical scientific gaps and 

opportunities for research to help inform federal agencies, foundations, and private sector 

organizations. Individual members of the Summit Steering Committee, including academic 

researchers, PLWD, care partners, and other stakeholders, contributed to the development of 

research gaps and opportunities that were organized into six broad themes and one integrated 

theme. These research gaps and opportunities—which are enumerated in the scientific 

highlights of each theme as well as in Appendix 1—are designed to highlight areas in which new 

or additional research can inform efforts that meaningfully impact the lives of PLWD and care 

partners. 

The NIA and the 2020 Summit Steering Committee members reviewed a broad range of 

background material to assist in its summit planning, including the 2017 National Research 

Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, 2018 

NIH Alzheimer’s Research Summit, 2019 Alzheimer’s Disease-Related Dementias Summit, 

National Plan to Address Alzheimer’s Disease, and the AD/ADRD Research Implementation 

Milestones to meet the goals of the National Plan to Address Alzheimer’s Disease. 

NIA and Summit planning committees sought input from individuals with diverse expertise and 

perspectives—including academic researchers, public policy experts, PLWD, their family 

members, and other care partners. Their efforts included: 

• Seeking input during the Summit planning process through a published Request for

Information in the NIH Guide.

• Convening a Summit Steering Committee, led by Dr. Jennifer Wolff (Johns Hopkins

University) and Dr. David Reuben (University of California, Los Angeles), composed of

academic researchers as well as other stakeholders, including a person living with

dementia and a care partner.

Summary Report Page 5 
 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

• Seeking input from the National Alzheimer’s Project Act (NAPA) Advisory Council. 

• Working with the HHS Office of the Assistant Secretary of Planning and Evaluation 

(ASPE) to convene and consider written input from five Stakeholder Groups including 

persons with dementia, informal care partners, service providers, workforce 

development, and payers (Stakeholder Group recommendations are available on ASPE’s 

NAPA website). 

• Seeking input from federal partners. 

• Providing opportunities before, during, and after each Virtual Session of the Summit for 

audience participation and engagement. 

• Seeking input on the draft research gaps and opportunities through a second published 

Request for Information in the NIH Guide. 

The Steering Committee members participated in numerous in-person and virtual meetings 

from July 2019 through July 2020 to consider stakeholder input and develop a set of draft 

research gaps and opportunities aligning with six broad themes of dementia care and caregiving 

research plus one integrated theme. The gaps and opportunities were designed to encompass 

targeted areas where new knowledge could lead to efforts that would meaningfully improve 

the lives of PLWD and their care partners. Themes included: 

• Theme 1: Impact of Dementia 

• Theme 2: Long-Term Services and Supports (LTSS) in Home, Community, and Residential 

Care Settings for Persons Living with Dementia and their Care Partners 

• Theme 3: Services and Supports in Medical Care Settings for Persons Living with 

Dementia 

• Integration of Themes 2 and 3: The Present and Future of Integrated Long-Term and 

Medical Care 

• Theme 4: Participation of Persons Living with Dementia and their Caregivers in Research 

• Theme 5: Intervention Research, Dissemination, and Implementation 

• Theme 6: Research Resources, Methods, and Data Infrastructure 

The Summit also included five cross-cutting themes—perspectives from PLWD and their care 

partners, health disparities, ethics, technology, and etiologies—and an emerging topics session. 

Originally planned as a 2-day in-person meeting to take place on March 24-25, 2020, the 

Summit was transformed in response to COVID-19 into a series of three interactive virtual 

sessions that each included research presentations, introduction of draft research gaps and 

opportunities, panelist reactions and perspectives, opportunities for questions from the 

audience, and moderated discussion among speakers. The Summit virtual sessions were held 

via Zoom Webinar on July 10, July 21, and August 13, and a Twitter poster session was held on 

August 6, 2020 using #DementiaCareSummit.

4 For the purposes of this report, scientific 

highlights and research gaps and opportunities are presented in order of theme even though 

4 Visit https://www.nia.nih.gov/2020-dementia-care-summit#Materials to access meeting materials from and 

YouTube recordings of each virtual session. 

Summary Report Page 6 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

logistical circumstances led NIA to present the themes somewhat out of order during the three 

virtual sessions. 

Following the virtual Summit series, the Steering Committee members received a summary of 

RFI input and a draft report summarizing scientific highlights of the virtual Summit and began 

revising research gaps and opportunities. The committee members met virtually in September 

2020 to review and further refine the revised research gaps and opportunities (Appendix 1) 

based on individual input from the committee members. 

Setting the Stage 

The first meeting of the Virtual Summit featured a series of short presentations to provide 

context for the overall Summit. NIA Director Dr. Richard Hodes reviewed NIA’s long-standing 

commitment to Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) 

research. Steering Committee members Dr. Lonni Schicker and Ms. Katie Brandt provided 

remarks on the lived experience of PLWD and care partners. Mr. Arne Owens, Deputy Assistant 

Secretary for Disability, Aging, and Long-Term Care Policy at ASPE, delivered an overview of the 

NAPA, the National Plan, and the NAPA Advisory Council. 

Dr. Laura Gitlin highlighted progress achieved since the 2017 National Research Summit on 

Care, Services, and Supports for Persons with Dementia and Their Caregivers, for which she 

served as co-chair. This historic care Summit articulated established knowledge about dementia 

care and services and identified knowledge needed to improve the lives of PLWD and their care 

partners. The Summit initiated a paradigm shift that underscored the importance of involving 

multiple stakeholders—including PLWD and their care partners—in the development of personcentered research questions and outcomes. This first Summit generated 464 research priorities 

that were broadly categorized into twelve broad themes: heterogeneity, lived experiences, care 

partner relationships, person/family-centered care models, engaging PLWD as research team 

members, financial burden and cost of care, living environments, nomenclature, workforce 

development, research methods, dissemination of evidence, and technology. 

The AD/ADRD Research Implementation Milestones on NIA’s public website provide 

information on implementation activities for each milestone, including progress made (e.g. 

funding opportunities, research programs and resources, and research highlights). 

Theme One: Impact of Dementia 

Co-Chairs: María P. Aranda, PhD, University of Southern California, and Ian Kremer, JD, Leaders 

Engaged on Alzheimer’s Disease (LEAD) 

This theme included issues related to heterogeneity and trends in the lived experience of 

dementia, including the clinical impact and trajectory for PLWD and their care partners across 

the range of etiologies; the economic impact of dementia for patients, care partners, payers, 

public programs, and society; and the effects of dementia, including the impact of health 

disparities on diverse populations – for example by sex and gender, socioeconomic status (SES), 

Summary Report Page 7 
Virtual Summit on Dementia Care July - August 2020 

geography, race and ethnicity, language, education, and living arrangements, including people 

living alone or without caregivers. 

Population Trends of ADRD: Importance of Lifecourse and Diversity 

Rachel Whitmer, PhD, University of California, Davis 

Rates of AD/ADRD vary across racial and ethnic groups, with incidence highest among African 

Americans and lowest among Asian Americans.5 These disparities reflect social determinants of 

health that accumulate over the lifecourse in ways that differ across populations. As the U.S. 

population becomes increasingly diverse, AD/ADRD studies that reflect that diversity will not 

only improve study precision in the present, but also ensure that findings are relevant to the 

population of the future. Addressing disparities in prevalence and incidence of AD/ADRD 

requires not only recruiting and retaining diverse study participants, but also contextualizing 

research questions with cultural sensitivity, balancing depth and breadth, pooling studies to 

answer unique questions, harmonization, employing correct methods to navigate potential 

confounds (e.g., the healthy volunteer effect), and embracing a lifecourse approach to account 

for long-term drivers of disparities between groups. 

Disparities in Health, Services, and Interventions for PLWD and Family Caregivers: 

Evidence and Future Directions 

Ladson Hinton, MD, University of California, Davis 

Emerging evidence from disparities research suggests that disparities permeate the course of 

dementia care among African American and Latinx PLWD—from diagnosis to differences in 

treatment interventions and end-of-life care—and include disproportionate impacts on family 

care partners. However, the drivers of disparities are unknown, and detection in many 

vulnerable populations has not been thoroughly assessed. Moreover, evidence gaps can 

widen as trials move from efficacy to pragmatic studies in healthcare systems where disparities 

exist. These gaps may be narrowed through broad inclusion of populations underrepresented 

in research (e.g., racial and ethnic minorities, gender and sexual minorities, people of low 

socioeconomic status) in pragmatic clinical trials that are sufficiently powered to detect and 

understand inequities between subgroups. 

Economic Impact of Alzheimer’s Disease and Related Dementias for Individuals, Care 

Partners, and Society 

Julie Zissimopoulos, PhD, University of Southern California 

Annual per-person medical and caregiving costs are four times higher for PLWD, with higher 

costs incurred by non-white PLWD.6 The total national cost of dementia care in the U.S. is 

anticipated to rise to $1.6 trillion by 2050. There is a need to better understand the 

5 Mayeda, ER et al. (2016) Inequalities in dementia incidence between six racial and ethnic groups over 14 years. 

Alzheimers Dement 12(3): 216-224. 6 Zissimopoulos, J et al. (2014) The value of delaying Alzheimer’s Disease onset. Forum Health Econ Policy 18(1): 25-

39. 

Summary Report Page 8 
 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

heterogeneity of economic impact and the drivers of cost differences and their impacts on 

policies and programs. Researchers must have access to longitudinal data sets and use rigorous 

methods to create models that can compare relative costs and health impacts of dementia care 

interventions. These models utilize national data to identify factors associated with cognitive 

decline, dementia onset, and related costs, and can be used to project how different 

interventions may reduce dementia prevalence and cost for future generations. 

Moderated Discussion Highlights 

Panelists: Cynthia Huling Hummel, BS, MDi, DMin, and Laura Trejo, MSG, MPA, City of Los 

Angeles Department of Aging 

Centering Disparities in Dementia Care Research 

Racial and ethnic disparities in dementia care represent a central gap in dementia care research 

with many opportunities for evaluation and improvement. But studies must treat these 

disparities not just as one potential topic among many, but instead as an essential element of 

their design. For example, community representatives and underrepresented minority 

researchers can be embedded throughout the research process to provide cultural and 

linguistic expertise that may increase engagement with underrepresented communities, 

improve appropriateness and accuracy of population-based measures, and promote research 

programs’ accountability. Recognition of disparities may reveal not only areas of increased 

burden, but also opportunities to evaluate the characteristics of communities that demonstrate 

resilience in some domains (e.g., lower psychological distress among African American care 

partners). Disparities emerge across not only populations but also among those who have 

different types of dementia, and diagnostic challenges create knowledge gaps that further 

increase these disparate experiences in dementia care and research. 

Centering the Experiences of PLWD in Dementia Care 

“Don’t talk about us without us” is panelist Cynthia Huling Hummel’s call to center the 

experiences of PLWD in dementia care and research. While some dementia care programs 

mandate the presence of a care partner, it is insufficient for researchers and clinicians to 

interact with care partners alone when providing care or researching effective interventions, 

and not offering options for those without care partners leaves many independent PLWD out. 

Such a focus implicitly denies the fact that many people live successfully with dementia for long 

periods of time, and this denial contributes to pervasive stigma that precedes diagnosis and 

often becomes a barrier to seeking diagnosis, treatment, and research opportunities. It is also 

important for researchers to account for the specificities of the lived experience of dementia 

when engaging PLWD and evaluating research priorities—for example, anticipating increased 

difficulty with noisy environments or feelings of loneliness. 

Theme One Research Gaps and Opportunities 

1.1 Conduct research to describe the nature, trajectory, and impacts of common and 

rare forms of AD/ADRD, or AD/ADRD with complex co-occurring conditions, on 

individuals, families, and society. Impacts should include particular attention to the 

needs, preferences, and strengths of individuals with and without care partners. 

Summary Report Page 9 
 

 

Virtual Summit on Dementia Care July - August 2020 

Complex co-occurring conditions refers to both medical conditions (e.g. diabetes, 

hypertension), as well as other conditions that affect daily function and interaction 

(e.g., sensory impairments, urinary incontinence). 

1.2 Conduct research to assess the extent to which differences in the nature, trajectory, 

and impact of AD/ADRD are mediated by heterogeneity among individuals and 

families. Heterogeneity includes disease etiology, age of onset, disease severity, 

presence of complex co-occurring conditions (see 1.1), familial relationship (e.g. 

spouse/partner, adult child, sibling, in-law), race and ethnicity, socioeconomic status, 

health disparities, gender identity, sexual orientation, and geography. 

1.3 Conduct research on the positive and negative effects of pre-clinical diagnoses on 

persons receiving this diagnosis and their care partners as well as on health systems, 

utilization, and costs of care. Positive effects include opportunities to self-advocate, 

participate in research, and engage in quality of life decision-making and advance care 

planning. Negative effects include labeling and stigma, emotional stress, and legal and 

financial repercussions. 

1.4 Conduct research to examine the impact of explicit and implicit bias and stigma 

against PLWD and their care partners on their wellbeing. Impact includes 

understanding the lived experience of membership in more than one stigmatized 

group, (i.e., the intersectionality of gender, race, socioeconomic status, rurality, and 

immigration status) that may heighten vulnerabilities and health disparities and 

decrease personal and family capabilities of PLWD with and without care partners. 

1.5 Conduct research to better describe how social determinants of health and attributes 

of the neighborhood and community in which individuals live as well as nationallevel cultural and political factors affect the well-being of both PLWD with and 

without care partners and on care partners. Social determinants include education, 

social and economic resources, health disparities, housing and transportation, 

healthcare and aging services infrastructure, disability policy, and immigration policy. 

1.6 Conduct research to determine how risks to well-being differ among care partners 

based on caregiving circumstances, and how such differences are mediated by 

individual, family, and disease characteristics. Dimensions of well-being include social 

isolation; marital breakdown; loneliness; financial, legal, and psychological 

vulnerabilities; injuries; and self-neglect. Caregiving circumstances include living 

arrangement, competing family and work responsibilities, availability and 

interpersonal dynamics of family and other helpers, social and economic resources, 

and health disparities. 

1.7 Conduct research to characterize and identify gaps in the care settings in which 

PLWD with and without care partners receive personal care services, medical, 

psychiatric, substance use, and recreational services, as well as issues related to 

aging in place. Settings include community-based, residential care, nursing facilities, 

and senior housing, among other settings. 

1.8 Conduct research to describe how economic and financial burdens affect the lived 

experiences of persons with dementia with and without care partners and their care 

partners, including choices about diagnosis, treatment, supportive services use, and 

research participation. 

Summary Report Page 10 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

1.9 Conduct research to describe the effects of AD/ADRD on financial status and 

financial outcomes. Financial outcomes include spousal/family impoverishment, 

reduction or loss of employment opportunities, disruption of employee benefits (e.g., 

health insurance, accrual of social security benefits and/or private retirement), health 

disparities, uptake of long-term care insurance, and eligibility for long-term services 

and supports for PLWD with and without care partners and their families and other 

care partners. 

Theme Two: Long-Term Services and Supports in Home, Community, 

and Residential Care Settings for Persons with Dementia and their 

Caregivers 

Co-Chairs: Robyn Stone, DrPh, LeadingAge LTSS Center at University of Massachusetts, Boston, 

and Sheryl Zimmerman, PhD, The University of North Carolina at Chapel Hill 

This theme included issues related to the organization, financing, and delivery of long-term 

services and supports (LTSS) in the home and community and in residential settings, such as 

assisted living and nursing homes. Issues related to the formal care and provider workforce, 

services provided by community-based organizations, payment and financing, industry, and 

care partners needs were addressed. 

Evidence-based Person-centered Practices for Persons Living with Dementia and Their 

Care Partners: What do we know, where to next? 

Kimberly Van Haitsma, PhD, FGSA, The Pennsylvania State University 

Promising nonpharmacological interventions currently exist to treat cognitive decline, 

functional decline, and behavioral expressions for PLWD and to improve the well-being and 

capability of care partners and staff care providers. Yet more work is needed to address 

research rigor, pragmatic dissemination and implementation, social determinants of health, 

and the inclusion of positive outcomes. Questions remain about how to implement these 

interventions most effectively across varied environments and populations. Furthermore, many 

of these interventions focus on mitigating deficits rather than optimizing quality of life. Next 

steps include seeking PLWD and care partner perspectives, using holistic theoretical models and 

frameworks to guide research, and using measures to capture positive processes and impacts. 

Future research may adopt process-based pragmatic measures like preference congruence (i.e., 

how well care processes align with preferences of PLWD) to design and study care approaches 

that yield meaningful, holistic, and person-centered outcomes. 

Understanding the Long-Term Services and Supports Workforce in a New Way 

Joanne Spetz, PhD, University of California, San Francisco 

Many aspects of the LTSS workforce, including highly variable formal training requirements and 

inconsistent state restrictions on the scope of direct care workers’ services, may impact PLWD 

quality of life in ways that have not been thoroughly examined. To foster a robust LTSS 

workforce, interprofessional teams that integrate medical specialists and direct care workers 

Summary Report Page 11 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

must be developed, which requires research on payment structures and implementation 

strategies as well as meaningful person-centered and culturally sensitive outcomes. As 

emerging LTSS technologies are increasingly adopted, care must be taken to evaluate how 

these technologies can complement the workforce in effective ways. Additionally, research is 

needed to inform promising culturally-sensitive efforts to advance person-centered care. 

Organization and Financing of Long-Term Services and Supports for People Living with 

Dementia (PLWD) 

David Stevenson, PhD, Vanderbilt University 

The lack of universal coverage for LTSS leaves many PLWD to rely on unpaid care partners and 

to bear exorbitant out-of-pocket costs. It also disrupts continuity of care as coverage changes 

from one service to the next, resulting in higher costs and worse outcomes. While managed 

care plans can help to integrate the financing and delivery of care services, no evidence is 

available for the impact of these plans specifically on PLWD. Research on benefit structures that 

encompass affordability as well as quality measures (e.g., quality of care, accountability and 

incentives, payment adequacy) and assessment of the preferences of PLWD are necessary to 

meet current challenges in LTSS and end-of-life care. 

Moderated Discussion Highlights 

Panelists: Alice Bonner, PhD, RN, FAAN, Institute for Healthcare Improvement, and Laurie A. 

Scherrer 

Workforce Considerations 

Feedback from direct care workers themselves can help to identify the most effective strategies 

for improving training, evaluation, care team coordination, and career paths for LTSS. 

Addressing these challenges is particularly important in rural and under-resourced 

communities, where staff shortages are more common. More research is also needed on the 

impact of alternative payment models on LTSS quality and cost, although preliminary evidence 

suggests such models reduce institutionalizations for PLWD. 

Person-Centered LTSS Care Models 

The experiences of PLWD are central to quality of dementia care and, if not included, the 

diagnostic and care experience can be ineffective and even “inhumane,” as described by 

panelist Laurie Scherrer. By contrast, educating and supporting PLWD and their care partners to 

be proactive participants in the proposed care regimen is not just a form of care delivery, but 

ultimately contributes to PLWD wellbeing and can positively influence outcomes and quality of 

life. Early integration of PLWD in care research can also be a cost-effective way to design 

interventions that may be more likely to succeed without major post hoc revision. 

Theme Two Research Gaps and Opportunities 

2.1 Use theory-driven frameworks to develop and test interventions that address the 

complex challenges experienced by PLWD and their care partners over the full course 

of the disease. For example, approaches can be guided by theories related to socioSummary Report Page 12 
 

 

 

Virtual Summit on Dementia Care July - August 2020 

ecological levels and social determinants of health and heterogeneity, including such 

issues as cultural diversity, and be used to reduce health disparities. The full course of 

the disease recognizes the evolving role of care partners over the disease course, 

including new care partners introduced later in the disease. 

2.2 Assess how interventions' effects on clinical endpoints of PLWD (e.g., cognition, 

function, well-being) relate to other considerations, including intensity of caregiving 

demands, care partner health, movement into residential long-term care, and costs 

to individuals, families, and society. 

2.3 Develop and evaluate interventions that address the social and emotional needs, 

including isolation, of PLWD, their care partners, and direct care workers. 

Interventions could include mindfulness-based approaches, physical activity, cognitive 

behavioral therapy, music, positive affect training, and technology. 

2.4 Develop and evaluate training for direct care workers to identify specific 

competencies and modalities that best contribute to improved health, quality of life, 

and financial and social outcomes for PLWD, their care partners, and the direct care 

workers themselves. Training includes technology to assist training and training in use 

of technology. 

2.5 Analyze the impact of heterogeneity among PLWD and the direct care worker and 

clinician workforce (paid and unpaid) and develop and test approaches that promote 

cultural awareness and respect, cultural competence, and communication skills. 

Heterogeneity includes racial, ethnic, and cultural identity and other factors that may 

affect underrepresentation in research and/or health disparities. 

2.6 Determine the relative effectiveness and efficiency of interprofessional workforce 

models in providing high-quality care to PLWD, and how to support workforce 

collaboration across home, community, and residential settings. 

2.7 Analyze the interactions between care partners, direct care workers, and clinicians, 

in relation to technologies designed for the care of PLWD; determine how 

technological change will affect future workforce needs, and design and evaluate 

effective education and training for care partners, direct care workers, and clinicians 

to use new technologies effectively. 

2.8 Conduct research to improve the supportive and care-related technologies available 

for and used by PLWD and their care partners, especially in populations with more 

limited social and economic resources. Examples of technological advances include 

smart phones, monitoring devices, remote technology, and smart assistive devices. 

2.9 Using measures that evaluate quality across LTSS settings in which PLWD receive 

care, evaluate alternative payment models, quality oversight efforts, and public 

reporting initiatives. 

2.10 Conduct research to examine the adequacy of payments for care received by PLWD 

in value-based payment efforts in the Medicaid and Medicare programs and other 

alternative payment models, as well as the effects on out-of-pocket expenses and on 

care partners. Medicare and Medicaid programs include Medicaid managed care 

plans, Medicare Advantage, and Special Needs Plans. Alternative payment models 

include accountable care organizations and bundled payment initiatives. 

Summary Report Page 13 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

2.11 Assess whether and how eligibility and payment policies for specific benefits pose 

barriers to receipt of supportive, palliative, and end-of-life care services, and 

evaluate ways in which these policies might be reformed to better meet the needs of 

PLWD and their care partners and reduce health disparities. Specific benefits include 

hospice, post-acute care, and psychological services. 

Theme Three: Services and Supports in Medical Care Settings for 

Persons with Dementia 

Co-Chairs: Susan Beane, MD, Healthfirst, Inc., and Christopher Callahan, MD, MCAP, Indiana 

University 

This session addressed issues related to the organization, financing, and delivery of health care 

across the continuum of care for people at risk for and living with dementia, including the 

provision of care at home, care provided in urgent care facilities and emergency departments, 

hospital inpatient and post-acute care (both in skilled nursing facilities and home health care), 

and hospice care. Issues related to the professional health care and provider workforce, 

payment and financing, and industry were addressed. 

Providing High-Quality Care in Medical Care Settings 

Joshua Chodosh, MD, MSHS, FACP, New York University 

Many care models offer comprehensive dyad-focused services (e.g., psychosocial support, 

medical interventions), with roots in communities or academic health systems and involvement 

of both trained non-professionals and professional providers (e.g., nurse, social worker). Some 

models focus on care transitions. Yet primary care is often left out of these otherwise 

comprehensive care models because few models are directly embedded in a medical care 

system and assessment of cognitive function is often overlooked in primary care appointments; 

early-stage impairments are therefore often missed. Many dementia care model research 

questions remain unanswered, including questions about what the most meaningful care 

interventions are, especially for those who are from underrepresented groups; the minimum 

effective dose of care (e.g., variations of care provider, intensity, frequency); and whether 

dementia care models may be improved through “triadic” care strategies that engage the 

patient, care partner, and primary care provider. 

Care of PLWD with Multiple Chronic Conditions 

Cynthia M. Boyd, MD, MPH, Johns Hopkins University 

PLWD living in the community have an average of 3.2 other chronic medical conditions, which 

may play a role in quality of life, functional capacity, and reversible disability, and medical care 

for PLWD works best when this fact is recognized. Management of co-occurring conditions is 

costly and complicated, because dementia and co-occurring conditions exacerbate one 

another. However, cohesive treatment that tends to both dementia-related cognitive 

symptoms and the co-occurring condition can lead to mutual improvement. New knowledge is 

needed to facilitate a paradigm shift from disease-oriented treatment to a person-driven and 

Summary Report Page 14 
 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

goal-directed research agenda. Promising research opportunities include designing and 

adapting strategies for management of chronic conditions for PLWD, addressing opportunities 

for under- and overtreatment, and designing person- and family-centered care strategies. 

Financing the Care of PLWD 

Norma B. Coe, PhD, University of Pennsylvania 

Care for PLWD is often uninsured, particularly LTSS. Care provided by family and other unpaid 

caregivers accounts for nearly 50 percent of the total cost of dementia care and is considerably 

larger than direct costs to insurance programs.7 Comprehensive models of dementia care costs 

estimate that the true cost to caregivers is at least 20 percent higher than estimates that 

measure indirect caregiving only in lost wages, because a care partner’s own health and longterm career plans are often negatively impacted.8 Gaps in research on financing dementia care 

include how financing influences PLWD and care partner/caregivers’ care decisions and 

outcomes, how insurance programs can coordinate to improve outcomes and reduce cost, and 

whether widespread early detection would be cost-effective. 

Moderated Discussion Highlights 

Panelists: Shari Ling, MD, Centers for Medicare & Medicaid Services, and George Hennawi, MD, 

MedStar Good Samaritan Hospital 

Primary Care Model Design and Implementation 

A dementia care model embedded within a primary care setting offers an opportunity to 

provide comprehensive, person-centered treatment, tailored advance care planning, 

individualized management of multiple chronic conditions, and coordinated care transitions 

that help prevent unnecessary hospitalizations. Clearly defined parameters (e.g., who provides 

what service), participant roles (e.g., within dyads or families), and goals for this and other 

models of dementia care facilitate successful implementation and replication among dementia 

care studies. 

Eligibility for Benefits 

In circumstances in which resources are insufficient to cover dementia care, some individuals 

can become dually eligible for separate Medicare and Medicaid plans (not a specific combined 

dementia-care coverage plan). Opportunities to make Medicare benefits more easily navigable 

or for Medicare and Medicaid coverages to work harmoniously to provide quality care and save 

money (particularly before PLWD become dually eligible) have not been adequately assessed. 

Theme Three Research Gaps and Opportunities 

3.1 Evaluate and compare comprehensive models of care and develop new models for 

subgroups of PLWD that are not effectively served by existing models. Specifically 

compare “stand-alone” care models that support primary care of PLWD/dyads versus 

7 Hurd, MD et al. (2013). Monetary costs of dementia in the United States. N Engl J Med 368: 1326-1334. 8 Coe, NB et al. (2018). A comprehensive measure of the costs of caring for a parent: differences according to 

functional status. J Am Geriatr Soc 66(10): 2003-2008. 

Summary Report Page 15 
 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

those embedded in primary care programs and other mainstream models of care 

delivery. 

3.2 Determine the core competencies, domains, and quality metrics needed to ensure 

that medical care for PLWD is consistent with evidence-based clinical standards. 

3.3 Develop and test the efficiency and effectiveness of strategies to provide PLWD with 

diagnostic and longitudinal comprehensive care, including co-existing conditions, in 

various settings. These settings include typical clinical settings such as ambulatory 

care network settings and small practice settings, settings serving PLWD who have 

limited resources, including rural and safety net settings (such as Federally-Qualified 

Health Centers), and residential care. 

3.4 Assess the impact of promoting care planning, assessment, evaluation of 

preferences, and advanced care coordination across the range of disease stages, 

from preclinical to severe dementia, on the efficiency, effectiveness, and experience 

of care of PLWD and their care partners. Advanced care coordination includes 

advance care planning, end-of-life, palliative care, and hospice. 

3.5 Determine the qualitative and quantitative impact of improvements in detection, 

diagnosis, treatment, and care management of PLWD across all treatment settings, 

on individuals, families, and society. 

3.6 Study the effect of access to health insurance on the receipt of person-centered care 

and the location of care for PLWD. 

3.7 Determine how payment affects access and quality of care received by PLWD in a 

variety of community and residential settings. 

3.8 Develop and test the ethical implications and cost-effectiveness of inclusion of the 

caregiver in the care team of the PLWD. 

Integration, Themes Two and Three: The Present and Future of 

Integrated Long-Term and Medical Care 

Co-Chairs: Christopher Callahan, MD, MCAP, Indiana University, and Robyn Stone, DrPh, 

LeadingAge LTSS Center at University of Massachusetts, Boston 

This session addressed the integration of Themes 2 and 3, including innovations in organization, 

financing, and delivery to support integration of medical care and LTSS across the range of 

settings in which PLWD and their care partners live and receive care. 

Building the Case for Integrating LTSS, Medical Care, and Financing 

Kerry Branick, Centers for Medicare & Medicaid Services 

Approximately 12 million individuals are dually eligible for Medicare and Medicaid benefits, but 

these programs were not designed to work together, and most dually eligible individuals are 

not enrolled in an integrated program to make them more cohesive. The Centers for Medicare 

& Medicaid Services (CMS) Financial Alignment Initiative demonstration projects aim to address 

the financial misalignment between the two programs and test one combined Medicare and 

Summary Report Page 16 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Medicaid product (e.g., one enrollment process, identification card, and benefit package) for 

dually eligible individuals. These demonstration projects offer an opportunity to study 

coordinated LTSS and medical care that may offer more cost-effective, tailored benefits; aligned 

financial incentives; comprehensive risk assessment; and oversight for quality assurance. 

Signals on Successful Approaches to Integrating LTSS and Medical Care 

Bruce Leff, MD, Johns Hopkins University 

Successful care delivery relies on the careful alignment of a targeted recipient population, the 

care model itself, and the desired outcome. For LTSS, this alignment entails matching specific 

LTSS and medical services to individual PLWD based on their needs, desired outcomes, and 

unique environment. It is also important to assess how services used in combination influence 

each other, in terms of efficacy, practicality, and affordability; evidence from a recent 

integrated service effort shows that less desirable outcomes (e.g., long-term 

institutionalization) can be reduced when primary care is integrated with LTSS.9 

Moderated Discussion Highlights 

Models of Implementation Financing and Outcomes 

Multiple care implementation strategies will likely be needed to account for the variable 

Medicaid and coverage programs nationwide. More research on the interaction of care 

implementation and payment models is needed to effectively compare the impact of various 

alignment structures on health outcomes and disparities, as well as how different coverage 

programs can harmonize to save money. 

Integration Research Gaps and Opportunities 

Int.1 In the context of integrated long-term services and supports (LTSS) and medical care 

for PLWD, determine what services are appropriate for integration versus 

coordination, in what manner, for whom, toward what ends, and with what payer 

arrangements. Integrated care may include co-location or care provided within a 

single delivery system or source of funding of services or supports, whereas 

coordination refers to deliberate organization of services through exchange of 

information by care providers responsible for varied aspects of care. Research should 

examine the broad spectrum of PLWD, from diagnosis and early intervention through 

mid-stage to end-of-life. 

Int.2 Develop, evaluate, and optimize approaches to quality measurement in the context 

of value-based care initiatives, so as to encourage and support optimal integrated 

and coordinated care delivery models and approaches for PLWD. Approaches include 

health information technology. 

Int.3 Develop and evaluate evidence-based strategies for the optimal integration and 

coordination of AD/ADRD care services across healthcare delivery and community9 Valluru, G et al. (2019). Integrated home and community based services improves community survival among 

Independence at Home Medicare beneficiaries without increasing Medicaid costs. J Am Geriat Soc: 67(7): 1495-

1501. 

Summary Report Page 17 
 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

based organizations, including examining whether models of integrated LTSS and 

medical care are best designed as carve out (separate) models or as add-in models 

that are coordinated within the broader system. Evidence-based strategies include 

tools and assessments, models of care, and technologies that focus on the range of 

rural and urban settings. Integrated care includes both Medicaid supported and other 

populations and financing models, such as Medicare Advantage and Alternative 

Payment Models. 

Int.4 Conduct research to develop, implement, and evaluate public health emergency 

preparedness and disaster responsiveness systems that meet the social, emotional, 

and medical needs of PLWD and their care partners. Needs include ensuring personal 

emergency response equipment and immediate emergency response; safe evacuation 

and transportation; basic food, lodging, medical, and support services; and long-term 

management and monitoring. In addition, ensuring that medical facilities, including 

emergency departments, hospitals, and nursing homes are capable of providing 

comprehensive care for PLWD that accounts for their range of needs. Such research 

should address potential disparities of PLWD with limited social and economic 

resources. 

Int.5 Conduct research to develop and evaluate tools, strategies, and models that more 

effectively train, support, and involve care partners in the care of PLWD. Such 

research should consider efforts to better prepare the workforce to address the needs 

of care partners of persons affected by various types of dementia etiologies and from 

subgroups at heightened risk for health disparities (e.g., by educational attainment, 

health literacy, or with less access to care). 

Int.6 Conduct research to develop and study mechanisms to support the involvement of 

care partners when they play essential roles implementing the care plan of the 

PLWD. Such research may encompass a wide range of compensation to care partners 

as well as the organizations that pay for the care of PLWD, such as traditional 

Medicare, Medicare Advantage, Medicaid, and other private payers. 

Theme Four: Participation of Persons with Dementia and their 

Caregivers in Research 

Co-Chairs: Lori Frank, PhD, RAND Corporation, and Jason Karlawish, MD, University of 

Pennsylvania 

This theme addressed participation in research, including the consideration of PLWD and their 

care partners as research participants and as engaged research partners. Topics included the 

importance of patient activation and care partner engagement in research study design and 

health outcomes; the significance of nomenclature in participant recruitment and retention 

strategies and how research is conducted; and optimizing the collection of information derived 

from a variety of sources, including PLWD and care partner reports, technology-based 

assessments, and meta-data. 

Summary Report Page 18 
 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Reporters, Data Sources, and Outcomes in Dementia Research 

Lee A. Jennings, MD, MSHS, University of Oklahoma Health Sciences Center 

Person-defined dementia care outcomes may be preferable to disease-based outcomes 

because they can account for multiple co-occurring conditions and capture overall quality of 

life. Several opportunities already exist to operationalize these personalized outcomes in 

research. Individual goals can be measured in standardized units by adhering to SMART 

attributes (Specific, Measurable, Attainable, Relevant, and Time-bound), and goal attainment 

can be quantified according to whether the PLWD or care partner met, exceeded, or failed to 

meet expected goals. Validated patient-reported outcome measures (PROMs) may be refined 

to address the impact of worsening cognition or changes in relationships with care partners 

who provide proxy reports. Despite the challenges of using PROMs in assessments of PLWD, 

there are also many opportunities for future research, for example, to further develop methods 

and measures. Wearable devices or digital applications may be leveraged to create triangulated 

measures of person-defined outcomes. 

Nomenclature 

Ronald C. Petersen, MD, PhD, Mayo Clinic 

Researchers have long recognized the impact of nomenclature on all aspects of dementia care, 

from research to the clinic. Over recent decades, terminology to describe AD/ADRD has evolved 

to distinguish between pathophysiology (i.e., biological causes or correlates of dementia) and 

syndrome (i.e., clinical symptoms). While a precise pathophysiological definition of AD/ADRD 

facilitates diagnosis and research, it may be difficult to translate to PLWD, care partners, and 

other stakeholders outside of the medical field. Nomenclature has implications for research 

stakeholders: researchers must be able to use precise terms, clinicians must be able to translate 

scientific terms to patients and vice versa, and public stakeholders’ concerns with language 

must be addressed to address stigma and willingness to participate in research. 

Putting the “Me” in Dementia Research 

Tabassum Majid, PhD, MAgS, University of Maryland, Baltimore County 

Engagement between researchers, patients, and other stakeholders in the conduct of research 

is expanding in many therapeutic areas. Few studies engage PLWD as research partners, 

however. While partnering with individuals with progressive cognitive impairment presents 

unique challenges, PLWD can provide insight into the lived experience of dementia to the 

benefit of study design and selection of outcomes to measure. Engaged PLWD research 

partners can also help to disseminate research findings. 

Summary Report Page 19 
 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Moderated Discussion Highlights 

Panelists: Andrea Gilmore-Bykovskyi, PhD, RN, University of Wisconsin-Madison, and Lonni 

Schicker, EdD, RN 

Challenges and Opportunities for PLWD Engagement with Research 

Dementia research often focuses on deficit-oriented measurements while overlooking 

measures of positive ability and strengths; including person-centered outcomes can optimize 

ability rather than merely stave off decline. In addition to careful selection of measures, 

thoughtful use of clear terminology is critical to effective engagement with PLWD. For example, 

intentional use of concrete language can help PLWD understand and engage with research 

more meaningfully. Nomenclature can also be chosen to reduce potential sources of stigma 

within and beyond the research setting (e.g., using the term “study partner” rather than 

“caregiver” to describe people who accompany research participants with mild cognitive 

impairment). 

Dementia-Specific Considerations for Data Sources 

Empirical data are needed to inform evidence-based efforts to increase inclusivity in dementia 

care research. Definitions and evaluations of assent for PLWD must also be improved to ensure 

that PLWD and their self-reported outcome measures are not excluded from dementia 

research. To appropriately include self-report data, more research is needed on the impact of 

fluctuating cognitive ability and insight on these reports. Additionally, the environments in 

which data are collected must be carefully chosen to ensure that the full scope of heterogeneity 

among PLWD (e.g., race/ethnicity, SES, social norms, access to care, range of experience with 

cognitive changes) is accurately captured. Heterogeneity can also be assessed more thoroughly 

if researchers place an emphasis on person-centered care approaches. 

Theme Four Research Gaps and Opportunities 

4.1 Test research strategies, practices, or methods to increase recruitment of 

heterogeneous samples in AD/ADRD research and improve representation of 

underserved and under-included groups to understand and reduce health disparities. 

These methods should increase understanding of the lived experience of groups that 

have heightened risk, more limited access to care, and greater disease burden, and are 

from stigmatized or otherwise culturally disadvantaged groups (see 1.3). 

4.2 Develop and implement broader conceptualizations and measures of outcomes that 

are informed by the perspectives of PLWD and their care partners. Such measures 

should be person- and family-centered in orientation, holistic in focus, positive in 

nature, and able to be used pragmatically across medical and long-term services and 

supports settings, and should incorporate an equity lens. 

4.3 Develop and test methods to address fluctuating and/or declining cognition, 

including loss of insight, to enhance appropriate use of self-report by PLWD. 

Attention should be devoted to understanding the implications of new methods of 

data collection and reporting in the context of various types of dementia. 

4.4 Develop and test methods to integrate multiple sources of information to optimize 

outcomes measurement; address multiple reporter concordance, discordance, and 

Summary Report Page 20 
 

 

 

Virtual Summit on Dementia Care July - August 2020 

weighting strategies. Multiple sources of information may include clinical data, 

information reported from PLWD, information reported by a knowledgeable 

informant (e.g., caregiver/care partner), and technology-derived data. 

4.5 Develop and test personalized outcomes as endpoints in intervention trials. 

Personalized outcomes refer to measures that reflect individual preferences and/or 

goals that can be used to tailor and individualize services and supports. 

4.6 Develop and test methods to capture well-being and health-related quality of life 

across all stages of disease and symptomatology. Well-being and health-related 

quality of life includes that of PLWD and paid and unpaid care partners. 

4.7 Conduct research to determine how language about aging and cognitive disorders 

affects the conduct of dementia studies. 

4.8 Undertake research to understand how nomenclature influences recruitment into 

research and identify best practices for disclosure of research results. This includes 

consideration of the impact of nomenclature and language on diverse groups, 

including those at heightened risk of dementia and those from stigmatized or 

otherwise culturally disadvantaged groups. 

4.9 Determine how nomenclature for AD/ADRD and caregiving contributes to stigma 

and develop and test strategies that can mitigate stigma about dementia and 

dementia caregiving. Stigma may be on a personal or societal level. 

4.10 Identify methods to improve the validity, value, and efficiency of studies given 

increased sharing of information among participants and potential participants. 

Such efforts should address impact on the methodological rigor of studies for which 

activated patient communities might share information that breaks the study blind, 

influences recruitment in a non-systematic way, or otherwise challenges traditional 

study design and conduct. 

4.11 Identify methods to understand, increase, and evaluate stakeholder engagement in 

dementia studies across the full range of potential stakeholders, research processes, 

and residential and care delivery settings. Such efforts should address engaging 

stakeholders from underserved and under-included groups, particularly those from 

stigmatized or otherwise culturally disadvantaged groups. Stakeholder engagement 

can include participation in research question generation and prioritization, review of 

funding applications, participation in the conduct of research (e.g., recruitment and 

retention, review of study materials), and dissemination of study results. 

Theme Five: Intervention Research, Dissemination, and 

Implementation 

Co-Chairs: Michael Monson, MPP, Social Health Bridge, and Malaz Boustani, MD, MPH, Indiana 

University 

This theme addressed methods to improve intervention research relating to dementia care and 

caregiving that targets individuals, dyads, or organizations and approaches to improve the 

implementation and dissemination of evidence-based interventions, including strategies to 

motivate systems change to promote adoption and sustainability. More specifically, 

Summary Report Page 21 
 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

presentations and discussion focused on methods to design, implement, and disseminate 

scalable dementia care interventions, including tools, processes, and strategies to create 

demand for adoption and sustainability. 

Developing and Disseminating an Evidence-based Practice Model 

Jürgen Unützer, MD, MPH, MA, University of Washington 

The Improving Mood-Promoting Access to Collaborative Treatment (IMPACT) collaborative care 

management program for late-life depression model may serve as an example from another 

scientific domain that could inform successful implementation and dissemination of effective 

dementia care programs. The IMPACT model was designed to expand depression treatment by 

including a mental health care manager and psychiatric consultant on primary care teams. The 

IMPACT model standardizes evaluation and treatment protocols at participating practices, 

defines relevant outcome measures, and maintains a population registry. Primary care teams 

are supported with training to implement new protocols and are supplemented by psychiatric 

and mental health consultants to provide specialist expertise on an individual patient basis. 

Evidence supports the ability of the IMPACT model to increase treatment effectiveness while 

simultaneously cutting health care costs, as well as its capacity to provide strong support to 

practicing clinicians. The Advancing Integrated Mental Health Solutions (AIMS) center was 

developed to disseminate this evidence-based care model and has trained more than 5,000 

clinicians and more than 3,000 consulting psychiatrists in the implementation of this 

intervention. 

Current Challenges in Implementation Science, and Implications for Improving the 

Care of Persons Living with Dementia 

Luci K. Leykum, MD, MBDA, MSc, FACP, SFHM, The University of Texas at Austin 

Hybrid study designs reduce the time between gathering and implementing therapeutic 

evidence and putting it into practice. Researchers can enhance implementation science further 

by increasing early participation of PLWD, care partners, and clinicians in ways that more 

closely align care provider and recipient goals. Participatory approaches to research begin with 

the experiences of PLWD (rather than with pre-defined research outcomes) and define unmet 

needs, gaps, problems, and potential solutions based on those experiences. Implementation 

science must also distill the essential components of an intervention to maintain effectiveness 

and identify how the intervention is impacted by varied environmental and individual contexts. 

Learning Health Systems 

Elizabeth A. McGlynn, PhD, Kaiser Permanente School of Medicine 

A learning health system is a system in which “science, informatics, incentives, and culture are 

aligned for continuous improvement and innovation.” As new data emerge, these systems 

reveal research opportunities, the results of which are implemented as updated best practices 

at points of interaction with care recipients. These best practices are monitored, ultimately 

generating more data to perpetuate the cycle of research, implementation, and improvement. 

Summary Report Page 22 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Learning health systems often leverage patient registries and can generate various types of 

data (e.g., randomized controlled trials, pragmatic clinical trials); these systems therefore 

provide an opportunity to systematically examine the best methods for augmenting currently 

existing dementia care data (e.g., through standardization or identification of desirable but 

lacking data). 

Panelist Remarks 

Panelist: Lisa Onken, PhD, National Institute on Aging 

Dr. Onken noted several common threads among the theme five research presentations. 

Replicating interventions with fidelity and reliability can be problematic because interventions 

are often complex and difficult to learn. Delivering interventions with fidelity is difficult when 

training is necessary, but training procedures are not available for use in the community and 

are not tested to ensure that interventions can be delivered correctly and that fidelity can be 

sustained. Ways to address some of these issues include determining the principles and 

essential ingredients of an intervention so that fidelity to principles can be measured, planning 

intervention development studies with implementation in mind at the outset, and developing 

and testing scalable training procedures. 

Moderated Discussion Highlights 

Keys to Successful Implementation 

Identifying and understanding the essential elements of an intervention’s success and the 

principles governing the efficacy of an intervention are crucial for achieving sustainability, 

replication, fidelity of implementation, and reliability of an intervention in varied contexts. For 

interventions that require training, it is important that training procedures are scalable for use 

by the people delivering the intervention in the community, and that these training procedures 

have been tested to ensure the intervention can be delivered correctly. 

Data Infrastructure for Learning Health Systems 

Learning health systems leverage data that are not traditionally collected in electronic health 

records (EHRs), such as priorities and preferences; these data often arise at the point of care, 

which requires infrastructure investments to accurately capture the information. Smaller health 

systems with limited resources need comprehensive data infrastructure solutions that are easy 

to implement and allow for the participation of care recipients and providers who may reside in 

distant locations. These smaller health systems could mitigate the costs of data infrastructure 

investments through collaborative efforts. 

Theme Five Research Gaps and Opportunities 

5.1 Identify strategies to shorten the timeline of translating innovative AD/ADRD care 

services for widespread use. Research should assess contextual and structural 

features of the environment and organizations that catalyze interaction, collaboration, 

and coordination of interdisciplinary teams and organizations. 

5.2 Identify strategies that create market demand for the rapid implementation and 

diffusion of evidence-based AD/ADRD care models within various payment models. 

Summary Report Page 23 
 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Market demand encompasses both individuals and families as well as public and 

private payers. 

5.3 Conduct innovative research using designs that increase the generalizability of 

research findings and promote the translation of effective dementia programs and 

services to real-world settings. Diverse methodologies should be encouraged, 

including pragmatic trials, adaptive trials, quasi-experimental designs, hybrid designs, 

mixed methods, rapid-cycle iterative design, and agile process measurement. Personcentered outcomes research models with stakeholder engagement and practice-based 

research models should be considered to facilitate this translation. 

5.4 Develop and evaluate approaches to incorporate AD/ADRD-focused intervention 

strategies into the current and future workflow of busy primary care settings. Such 

strategies may refer to tools such as screening and assessment instruments or care 

processes such as counseling or advance care planning. 

5.5 Conduct research to understand the effects of strategies to financially compensate 

community-based organizations that have essential roles in the care of PLWD. 

5.6 Conduct research to evaluate how principles of design, implementation, and 

diffusion that integrate science and engineering can promote dissemination of care 

innovations for PLWD. Such research should draw on the science of improvement and 

process evaluation techniques such as agile methodology and Plan-Do-Study-Act 

cycles. 

5.7 Develop and evaluate tools, processes, and strategies to reduce health disparities in 

AD/ADRD care by disseminating evidence-based models. Such research should 

address disparities by geography (e.g., urban vs. rural), providers (e.g., federally 

qualified health centers and those disproportionately serving stigmatized and lower 

socio-economic status groups), and underserved populations. 

5.8 Develop scalable, sustainable, and actionable AD/ADRD interventions that payers 

and providers can use “off the shelf” in practice. Such efforts should provide evidence 

on quality, safety, and financial return on investment, and guidelines on how to 

implement the intervention, including key contextual factors. 

Theme Six: Research Resources, Methods, and Data Infrastructure 

Co-Chairs: Joanne Pike, DrPH, Alzheimer’s Association, and Vincent Mor, PhD, Brown University 

This theme focused on methods, data, and processes to facilitate cross-cutting, high-impact 

research, such as approaches to intervention research (including pragmatic trials) and 

observational studies to enable monitoring of progress toward achieving research 

implementation milestones. Issues included survey infrastructure, ethical frameworks, costs, 

and access to data from EHRs. 

Identification of People Living with Dementia for Population and Health Care Research 

Julie P. W. Bynum, MD, MPH, University of Michigan 

Strategies for identifying PLWD to participate in studies depend on “fitness for use” (i.e., the 

alignment of the strategy with a study’s unique purposes and needs). In dementia care 

Summary Report Page 24 
 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

research, this alignment includes assessing level of disease identification and the tradeoffs 

required to achieve diagnostic specificity (e.g., cost, ethical implications, recruitment barriers). 

As diagnostic criteria become more nuanced, evaluations of fitness for use may become more 

refined and thus represent an opportunity to improve dementia care research. However, when 

PLWD participants are identified, consistency in diagnostic nomenclature is critical for accurate 

interpretation and harmonization of data. In addition, studies may need to look beyond 

healthcare data (e.g., EHRs) to identify PLWD who do not engage with clinical settings. 

Opportunities for Embedded, Pragmatic Clinical Trials Among People Living with 

Dementia and Their Caregivers 

Thomas G. Travison, PhD, Harvard Medical School 

Embedded pragmatic trials are inclusive and PLWD-centered by design, because of their 

positioning directly within healthcare systems and their focus on care delivery methods and 

outcomes that are practical and meaningful to PLWD and care partners. However, these trials 

present challenges inherent in the complexity of a real-world environment, which often 

requires sacrificing the control of a conventional trial design as well as achieving high levels of 

participation to generate meaningful results. Opportunities to mitigate these challenges include 

leveraging contemporary study designs that facilitate group comparisons (e.g., stepped wedge), 

investing in data infrastructure, and emphasizing interdisciplinary engagement among 

researchers and clinical practitioners to promote successful implementation. 

Consent for Research Involving Dementia: Some Ethical Considerations 

David Wendler, PhD, NIH Clinical Center 

Improvements are needed in the process of formally assessing decision-making capacity of 

individuals considered “at-risk” of declining cognition and PLWD. The “at-risk” designation, 

which conflates cognitive capacity with capacity to provide informed consent, may stigmatize 

designated people, and may not capture the range of individuals whose informed consent 

needs protection. Instead, a task-specific assessment of an individual’s ability to consent, 

commensurate with a study’s risk profile, should be conducted for all potential participants. 

Care should also be taken to assess the influence of external factors (e.g., comfort in the test 

setting) on ability to consent. Early identification of a surrogate who will make decisions with 

the PLWD based on the PLWD’s own values mitigates the need to explicitly define a point of 

decisional incapacity, which can be traumatizing for PLWD. There is also a growing movement 

that promotes supported decision making, which would allow all individuals—without 

surrogates and independent of their level of cognitive capacity—to make decisions for 

themselves by providing necessary assistance. 

Summary Report Page 25 
 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Moderated Discussion Highlights 

Panelists: Joe Chung, MS, Kinto Care, Craig W. Thomas, PhD, MS, Centers for Disease Control 

and Prevention, and Maggi C. Miller, PhD, University of South Carolina 

Consent and Engagement from PLWD and Care Partners 

Researchers have many opportunities to refine definitions of consent from PLWD as dementia 

progresses, as well as the role of proxy consent from a care partner over the course of 

treatment. It is also critical to design studies that can engage with PLWD throughout the course 

of dementia including in the absence of a care partner, rather than requiring a care partner in 

the inclusion criteria for studies. 

Data Sources and Infrastructure 

Statewide Alzheimer’s disease registries (e.g., South Carolina’s Alzheimer’s Disease Registry) 

can link data from individual PLWD across multiple independent data sources—including 

mental health services, education, law enforcement, and social services—to paint a more 

comprehensive picture of dementia care outcomes. Opportunities to expand on this data 

model include replication in other states or integration with similar systems in other states to 

create larger data sets. Use of claims data and EHRs across health systems, however, requires 

careful comparison of currently heterogeneous administrative coding practices. 

Theme Six Research Gaps and Opportunities 

6.1 Develop a public-private consortium to support a national data repository and 

technical assistance infrastructure that promotes interventions to improve the lives 

of PLWD and their care partners. The repository would include secure data from 

existing research, access techniques, research and analytic models, and 

implementation and dissemination strategies. It would be curated and updated with 

technical assistance available to researchers, health systems, and policymakers to 

optimize utilization of the repository, informed by an engaged research model. 

6.2 Undertake research to test the value of machine learning and artificial intelligence 

approaches to identify PLWD and their care partners that may be used to efficiently 

measure their needs for services, and outcomes of care. Diverse sources for this work 

may include electronic health records (EHR), health insurance claims, as well as 

financial credit and driving records. Attention should be devoted to understanding the 

ethical and other related implications of such approaches across various types of 

dementia etiologies and subgroups of PLWD who are at risk for disparities in access to 

AD/ADRD care. 

6.3 Conduct research on methods to engage payer and provider organizations in applied 

research on dementia-related care, services, and supports. 

6.4 Develop measures and approaches to monitor the adoption, dissemination, and 

effectiveness of dementia capable communities on outcomes that matter to PLWD, 

their care partners, payers, and society. 

6.5 Evaluate new and modified measures for identifying and characterizing PLWD who 

may benefit from dementia care interventions being tested in population-based and 

Summary Report Page 26 
 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

healthcare system-based studies and for monitoring progress toward identified 

milestones at the national, state, and community-levels. 

6.6 Promote research that integrates different techniques to identify cognitive 

impairment and disease staging for inclusion in research studies. Such research 

should draw on imaging, biomarkers, cognitive testing, and functional assessment and 

assess the effectiveness for persons with various types of dementia etiologies. Disease 

includes common and specific rare forms of AD/ADRD. 

6.7 Develop infrastructure for public health efforts and population-based studies of 

PLWD and care partners to monitor progress toward meeting national, state, and 

community milestones, including key subpopulations of interest. Needed 

infrastructure includes measures, surveys, and reporting systems and should prioritize 

capacity to report progress toward reducing health disparities. 

6.8 Develop and test new approaches to engaging persons with cognitive impairments 

in research who may not have the capacity to provide consent using traditional 

standards. Conduct research on the use of assent and dissent, with special 

consideration for understanding capacity, beneficence, and access to research both 

for individuals with dementia and their care partners. 

6.9 Conduct research to guide Institutional Review Boards and ethics committees on 

how to facilitate the appropriate collection of self-report data from PLWD and their 

care partners. 

6.10 Develop secure and ethical approaches to data collection through home monitoring. 

Emerging Topics 

Emotional Functioning in Persons with Dementia and Their Care Partners 

Joan K. Monin, PhD, Yale University 

Models of stress in dementia caregiving often focus on how stressors affect the psychological 

and physical health of the care partner. However, the emotional experience of PLWD and care 

partners is overlooked, due in part to the lack of scientific consensus on the definition of 

emotion and related challenges in measuring it. Much of the existing literature on emotions in 

dementia care centers on negative emotions (e.g., suffering, guilt) and their role in exacerbating 

dementia; examination of the protective impact of positive emotion is a more recent research 

endeavor. As emotion research in dementia care progresses, individual differences (e.g., 

dementia type, gender identity, race, and ethnicity) must be considered, as they can influence 

the experience of emotion as well. 

Technological Reserve in Persons with Dementia 

Jared F. Benge, PhD, ABPP-CN, Baylor Scott & White Health 

Technological reserve is the process of leveraging technology to build an environment that 

buffers the impact of cognitive change on real world functioning in PLWD. Technologies that 

assist with functions that would otherwise be undermined by cognitive decline (e.g., GPS for 

navigation, smartphone apps for reminders, augmentative communication devices) could be 

Summary Report Page 27 
 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

considered a form of “cognitive prosthetic.” Implementation of these technologies can increase 

the independence of PLWD safely and facilitate social connection. Technological reserve can 

also expand community-based dementia care models by monitoring treatment adherence, 

facilitating communication between PLWD and care partners, and increasing access to 

specialists for PLWD in underserved or remote areas. Despite the promise of technological 

reserve, high-quality research trials that address the pragmatic challenges and risks of these 

technologies are lacking and needed to support development and implementation. 

Identification at Preclinical Stages of Dementia 

Christine K. Cassel, MD, University of California, San Francisco 

Early diagnosis of pre-clinical dementia is now possible; however, research on the value of preclinical diagnosis for treatment decisions and outcomes is lacking. Likewise, more work must be 

done to understand the factors that impact individuals’ interest in pre-clinical diagnosis for 

themselves or family members, including the contributions of stigma to delayed diagnosisseeking or the influence of inadequate treatment options on the motivation to pursue a preclinical diagnosis. Additionally, the possibility of preclinical diagnosis raises many bioethical 

questions regarding advance care planning, disclosure of information, and access to diagnosis, 

which must be subjects of research themselves. 

Moderated Discussion Highlights 

Panelists: Venoreen Browne-Boatswain and Michael R. Belleville 

Interaction of PLWD and Emerging Interventions 

PLWD offer valuable voices in the assessment of dementia care options, both in terms of 

prioritizing preferred interventions and assessing the practicality of proposed interventions. As 

new care interventions and technologies emerge, relative risks must be communicated to 

PLWD even when those risks are only beginning to become clear to researchers themselves. 

Furthermore, as new or less expensive diagnostic tools become available (e.g., genetic testing, 

biomarkers, neuroimaging), care providers must be trained in how to communicate uncertainty, 

as these tests currently assess probabilistic risk. 

Relation of Population Disparities and Emerging Interventions 

Cultural sensitivity can mediate and modulate the impact of dementia care strategies and thus 

their effectiveness across populations; for example, the beneficial effects of music for PLWD 

may be achieved only if the music is culturally relevant to the individual. Underrepresented 

groups should therefore be involved in the research process as early as possible to establish 

trust with the medical and research communities, define interventions precisely, and maximize 

the likelihood of successful outcomes. Opportunities also exist to evaluate how variability of 

emotional processing and resilience across groups—as well as measurements of emotions 

themselves, and particularly positive emotions—impact clinical outcomes. 

Summary Report Page 28 
 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Conclusion 

Following the 2020 Summit virtual sessions, the Steering Committee met to revise, refine, and 

add to the list of draft research gaps and opportunities based upon the presentations, Q&A, 

and moderated discussions described in this summary, as well as the feedback received in the 

Request for Information (RFI) (NOT-AG-20-035). The final set of research gaps and 

opportunities (Appendix 1) will be presented to NIA’s National Advisory Council on Aging and 

the NAPA Advisory Council in early 2021. 

The research gaps and opportunities do not represent consensus advice. The 2020 Summit 

research gaps and opportunities synthesize the individual contributions of the PLWD, care 

partners, researchers, and other stakeholders involved in the Summit process regarding the 

most critical areas of dementia care research. The lessons learned at the 2020 Summit and 

encapsulated by these gaps and opportunities offer the dementia care and caregiving research 

community a chance to build on the progress made since the 2017 Summit, support the 

continued development of person-centered dementia care and research, and contribute to 

meaningful outcomes for PLWD and their care partners. 

Summary Report Page 29 
 

 

 

Virtual Summit on Dementia Care July - August 2020 

Appendix 1: 2020 Summit Research Gaps and Opportunities 

Theme One: Impact of Dementia 

This theme includes issues related to heterogeneity and trends in the lived experience of 

dementia, including the clinical impact and trajectory for persons living with dementia (PLWD) 

and their care partners across the range of etiologies; the economic impact of dementia for 

patients, care partners, payers, public programs, and society; and the effects of dementia, 

including the impact of health disparities on diverse populations – for example, by sex and 

gender, socioeconomic status, geography, race and ethnicity, language, education, living 

arrangements, including people living alone or without caregivers. 

1.1. Conduct research to describe the nature, trajectory, and impacts of common and rare 

forms of AD/ADRD, or AD/ADRD with complex co-occurring conditions, on individuals, 

families, and society. Impacts should include particular attention to the needs, 

preferences, and strengths of individuals with and without care partners. Complex cooccurring conditions refers to both medical conditions (e.g. diabetes, hypertension), as 

well as other conditions that affect daily function and interaction (e.g., sensory 

impairments, urinary incontinence). 

1.2. Conduct research to assess the extent to which differences in the nature, trajectory, 

and impact of AD/ADRD are mediated by heterogeneity among individuals and 

families. Heterogeneity includes disease etiology, age of onset, disease severity, 

presence of complex co-occurring conditions (see 1.1), familial relationship (e.g. 

spouse/partner, adult child, sibling, in-law), race and ethnicity, socioeconomic status, 

health disparities, gender identity, sexual orientation, and geography. 

1.3. Conduct research on the positive and negative effects of pre-clinical diagnoses on 

persons receiving this diagnosis and their care partners as well as on health systems, 

utilization, and costs of care. Positive effects include opportunities to self-advocate, 

participate in research, and engage in quality of life decision-making and advance care 

planning. Negative effects include labeling and stigma, emotional stress, and legal and 

financial repercussions. 

1.4. Conduct research to examine the impact of explicit and implicit bias and stigma 

against PLWD and their care partners on their wellbeing. Impact includes 

understanding the lived experience of membership in more than one stigmatized group, 

(i.e., the intersectionality of gender, race, socioeconomic status, rurality, and 

immigration status) that may heighten vulnerabilities and health disparities and 

decrease personal and family capabilities of PLWD with and without care partners. 

1.5. Conduct research to better describe how social determinants of health and attributes 

of the neighborhood and community in which individuals live as well as national-level 

cultural and political factors affect the well-being of both PLWD with and without care 

partners and on care partners. Social determinants include education, social and 

economic resources, health disparities, housing and transportation, healthcare and 

aging services infrastructure, disability policy, immigration policy. 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 30 
 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

1.6. Conduct research to determine how risks to well-being differ among care partners 

based on caregiving circumstances, and how such differences are mediated by 

individual, family, and disease characteristics. Dimensions of well-being include social 

isolation, marital breakdown, loneliness, financial, legal, psychological vulnerabilities, 

injuries, and self-neglect. Caregiving circumstances include living arrangement, 

competing family and work responsibilities, availability and interpersonal dynamics of 

family and other helpers, social and economic resources, and health disparities. 

1.7. Conduct research to characterize and identify gaps in the care settings in which PLWD 

with and without care partners receive personal care services, medical, psychiatric, 

substance use, and recreational services as well as issues related to aging in place. 

Settings include community-based, residential care, nursing facilities, senior housing, 

among other settings. 

1.8. Conduct research to describe how economic and financial burdens affect the lived 

experiences of persons with dementia with and without care partners and their care 

partners, including choices about diagnosis, treatment, supportive services use, and 

research participation. 

1.9. Conduct research to describe the effects of AD/ADRD on financial status and financial 

outcomes. Financial outcomes include spousal/family impoverishment, reduction or loss 

of employment opportunities, disruption of employee benefits (e.g., health insurance, 

accrual of social security benefits and/or private retirement), health disparities, uptake 

of long-term care insurance, and eligibility for long-term services and supports for PLWD 

with and without care partners and their families and other care partners. 

Theme Two: Long-Term Services and Supports in Home, Community, 

and Residential Care Settings for Persons Living with Dementia and 

their Caregivers 

This theme includes issues related to the organization, financing, and delivery of long-term 

services and supports (LTSS) in the home and community and in residential settings, such as 

assisted living and nursing homes. Issues related to LTSS workforce, services provided by 

community-based organizations, payment and financing, industry, and care partner needs are 

addressed. 

2.1 Use theory-driven frameworks to develop and test interventions that address the 

complex challenges experienced by PLWD and their care partners over the full course 

of the disease. For example, approaches can be guided by theories related to socioecological levels and social determinants of health and heterogeneity, including such 

issues as cultural diversity, and be used to reduce health disparities. The full course of 

the disease recognizes the evolving role of care partners over the disease course, 

including new care partners introduced later in the disease. 

2.2 Assess how interventions' effects on clinical endpoints of PLWD (e.g., cognition, 

function, well-being) relate to other considerations, including intensity of caregiving 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 31 
 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

demands, care partner health, movement into residential long-term care, and costs to 

individuals, families, and society. 

2.3 Develop and evaluate interventions that address the social and emotional needs, 

including isolation, of PLWD, their care partners, and direct care workers. 

Interventions could include mindfulness-based approaches, physical activity, cognitive 

behavioral therapy, music, positive affect training, and technology. 

2.4 Develop and evaluate training for direct care workers to identify specific competencies 

and modalities that best contribute to improved health, quality of life, and financial 

and social outcomes for PLWD, their care partners, and the direct care workers 

themselves. Training includes technology to assist training and training in use of 

technology. 

2.5 Analyze the impact of heterogeneity among PLWD and the direct care worker and 

clinician workforce (paid and unpaid) and develop and test approaches that promote 

cultural awareness and respect, cultural competence, and communication skills. 

Heterogeneity includes racial, ethnic, and cultural identity and other factors that may 

affect underrepresentation in research and/or health disparities. 

2.6 Determine the relative effectiveness and efficiency of interprofessional workforce 

models in providing high-quality care to PLWD, and how to support workforce 

collaboration across home, community, and residential settings. 

2.7 Analyze the interactions between care partners, direct care workers, and clinicians, in 

relation to technologies designed for the care of PLWD; determine how technological 

change will affect future workforce needs, and design and evaluate effective 

education and training for care partners, direct care workers, and clinicians to use new 

technologies effectively. 

2.8 Conduct research to improve the supportive and care-related technologies available 

for and used by PLWD and their care partners, especially in populations with more 

limited social and economic resources. Examples of technological advances include 

smart phones, monitoring devices, remote technology, and smart assistive devices. 

2.9 Using measures that evaluate quality across LTSS settings in which PLWD receive care, 

evaluate alternative payment models, quality oversight efforts, and public reporting 

initiatives. 

2.10 Conduct research to examine the adequacy of payments for care received by PLWD in 

value-based payment efforts in the Medicaid and Medicare programs and other 

alternative payment models, as well as the effects on out-of-pocket expenses and on 

care partners. Medicare and Medicaid programs include Medicaid managed care plans, 

Medicare Advantage, and Special Needs Plans. Alternative payment models include 

accountable care organizations and bundled payment initiatives. 

2.11 Assess whether and how eligibility and payment policies for specific benefits pose 

barriers to receipt of supportive, palliative, and end-of-life care services, and evaluate 

ways in which these policies might be reformed to better meet the needs of PLWD and 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 32 
 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

their care partners and reduce health disparities. Specific benefits include hospice, 

post-acute care, and psychological services. 

Theme Three: Services and Supports in Medical Care Settings for 

Persons Living with Dementia 

This theme includes issues related to the organization, financing, and delivery of medical care 

across the continuum of health care settings that serve individuals at risk for and living with 

dementia, including office and home, urgent care, emergency department, hospital inpatient, 

post-acute care (including skilled nursing facility and home health care), and hospice. Issues 

related to the care and provider workforce, payment and financing, and industry are addressed. 

3.1 Evaluate and compare comprehensive models of care and develop new models for 

subgroups of PLWD that are not effectively served by existing models. Specifically 

compare “stand-alone” care models that support primary care of PLWD/dyads versus 

those embedded in primary care programs and other mainstream models of care 

delivery. 

3.2 Determine the core competencies, domains, and quality metrics needed to ensure that 

medical care for PLWD is consistent with evidence-based clinical standards. 

3.3 Develop and test the efficiency and effectiveness of strategies to provide PLWD with 

diagnostic and longitudinal comprehensive care, including co-existing conditions, in 

various settings. These settings include typical clinical settings such as ambulatory care 

network settings and small practice settings, settings serving PLWD who have limited 

resources, including rural and safety net settings (such as Federally-Qualified Health 

Centers), and residential care. 

3.4 Assess the impact of promoting care planning, assessment, evaluation of preferences, 

and advanced care coordination across the range of disease stages, from preclinical to 

severe dementia, on the efficiency, effectiveness, and experience of care of PLWD and 

their care partners. Advanced care coordination includes advance care planning, end-oflife, palliative care, and hospice. 

3.5 Determine the qualitative and quantitative impact of improvements in detection, 

diagnosis, treatment, and care management of PLWD across all treatment settings, on 

individuals, families, and society. 

3.6 Study the effect of access to health insurance on the receipt of person-centered care 

and the location of care for PLWD. 

3.7 Determine how payment affects access and quality of care received by PLWD in a 

variety of community and residential settings. 

3.8 Develop and test the ethical implications and cost-effectiveness of inclusion of the 

caregiver in the care team of the PLWD. 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 33 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Integration, Themes Two and Three: The Present and Future of 

Integrated Long-Term and Medical Care 

These gaps and opportunities address the integration of Themes 2 and 3, including innovations 

in the organization, financing, and delivery to support integration of medical care and long-term 

services and supports (LTSS) across the range of settings in which PLWD and their care partners 

live and receive care. 

Int.1 In the context of integrated long-term services and supports (LTSS) and medical care 

for PLWD, determine what services are appropriate for integration versus 

coordination, in what manner, for whom, toward what ends, and with what payer 

arrangements. Integrated care may include co-location or care provided within a single 

delivery system or source of funding of services or supports, whereas coordination 

refers to deliberate organization of services through exchange of information by care 

providers responsible for varied aspects of care. Research should examine the broad 

spectrum of PLWD, from diagnosis and early intervention through mid-stage to end-oflife. 

Int.2 Develop, evaluate, and optimize approaches to quality measurement in the context of 

value-based care initiatives, so as to encourage and support optimal integrated and 

coordinated care delivery models and approaches for PLWD. Approaches include 

health information technology. 

Int.3 Develop and evaluate evidence-based strategies for the optimal integration and 

coordination of AD/ADRD care services across healthcare delivery and communitybased organizations, including examining whether models of integrated LTSS and 

medical care are best designed as carve out (separate) models or as add-in models 

that are coordinated within the broader system. Evidence-based strategies include 

tools and assessments, models of care, and technologies that focus on the range of rural 

and urban settings. Integrated care includes both Medicaid supported and other 

populations and financing models, such as Medicare Advantage and Alternative 

Payment Models. 

Int.4 Conduct research to develop, implement, and evaluate public health emergency 

preparedness and disaster responsiveness systems that meet the social, emotional, 

and medical needs of PLWD and their care partners. Needs include ensuring personal 

emergency response equipment and immediate emergency response; safe evacuation 

and transportation; basic food, lodging, medical, and support services; and long-term 

management and monitoring. In addition, ensuring that medical facilities, including 

emergency departments, hospitals, and nursing homes are capable of providing 

comprehensive care for PLWD that accounts for their range of needs. Such research 

should address potential disparities of PLWD with limited social and economic 

resources. 

Int.5 Conduct research to develop and evaluate tools, strategies, and models that more 

effectively train, support, and involve care partners in the care of PLWD. Such research 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 34 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

should consider efforts to better prepare the workforce to address the needs of care 

partners of persons affected by various types of dementia etiologies and from 

subgroups at heightened risk for health disparities (e.g., by educational attainment, 

health literacy, or with less access to care). 

Int.6 Conduct research to develop and study mechanisms to support the involvement of care 

partners when they play essential roles implementing the care plan of the PLWD. Such 

research may encompass a wide range of compensation to care partners as well as the 

organizations that pay for the care of PLWD, such as traditional Medicare, Medicare 

Advantage, Medicaid, and other private payers. 

Theme Four: Participation of Persons with Dementia and their 

Caregivers in Research 

This theme addresses participation in research and considers PLWD and their family caregivers 

as research participants and as engaged research partners. Topics include the impact of 

activated patient communities on study design and outcomes, nomenclature, and strategies for 

recruitment and retention; optimizing collection of information from a range of sources 

including PLWD and other informants, technology-based sources, and meta-data; 

considerations for returning genetic and biomarker information and other study data to 

participants; and talking about research and research results with PLWD and their care 

partners. 

4.1 Test research strategies, practices, or methods to increase recruitment of 

heterogeneous samples in AD/ADRD research and improve representation of 

underserved and under-included groups to understand and reduce health disparities. 

These methods should increase understanding of the lived experience of groups that 

have heightened risk, more limited access to care, and greater disease burden, and are 

from stigmatized or otherwise culturally disadvantaged groups (see 1.3). 

4.2 Develop and implement broader conceptualizations and measures of outcomes that 

are informed by the perspectives of PLWD and their care partners. Such measures 

should be person- and family-centered in orientation, holistic in focus, positive in 

nature, and able to be used pragmatically across medical and long-term services and 

supports settings, and should incorporate an equity lens. 

4.3 Develop and test methods to address fluctuating and/or declining cognition, including 

loss of insight, to enhance appropriate use of self-report by PLWD. Attention should be 

devoted to understanding the implications of new methods of data collection and 

reporting in the context of various types of dementia. 

4.4 Develop and test methods to integrate multiple sources of information to optimize 

outcomes measurement; address multiple reporter concordance, discordance, and 

weighting strategies. Multiple sources of information may include clinical data, 

information reported from PLWD, information reported by a knowledgeable informant 

(e.g., caregiver/care partner), and technology-derived data. 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 35 
 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

4.5 Develop and test personalized outcomes as endpoints in intervention trials. 

Personalized outcomes refer to measures that reflect individual preferences and/or 

goals that can be used to tailor and individualize services and supports. 

4.6 Develop and test methods to capture well-being and health-related quality of life 

across all stages of disease and symptomatology. Well-being and health-related quality 

of life includes that of PLWD and paid and unpaid care partners. 

4.7 Conduct research to determine how language about aging and cognitive disorders 

affects the conduct of dementia studies. 

4.8 Undertake research to understand how nomenclature influences recruitment into 

research and identify best practices for disclosure of research results. This includes 

consideration of the impact of nomenclature and language on diverse groups, including 

those at heightened risk of dementia and those from stigmatized or otherwise culturally 

disadvantaged groups. 

4.9 Determine how nomenclature for AD/ADRD and caregiving contributes to stigma and 

develop and test strategies that can mitigate stigma about dementia and dementia 

caregiving. Stigma may be on a personal or societal level. 

4.10 Identify methods to improve the validity, value, and efficiency of studies given 

increased sharing of information among participants and potential participants. Such 

efforts should address impact on the methodological rigor of studies for which activated 

patient communities might share information that breaks the study blind, influences 

recruitment in a non-systematic way, or otherwise challenges traditional study design 

and conduct. 

4.11 Identify methods to understand, increase, and evaluate stakeholder engagement in 

dementia studies across the full range of potential stakeholders, research processes, 

and residential and care delivery settings. Such efforts should address engaging 

stakeholders from underserved and under-included groups, particularly those from 

stigmatized or otherwise culturally disadvantaged groups. Stakeholder engagement can 

include participation in research question generation and prioritization, review of 

funding applications, participation in the conduct of research (e.g., recruitment and 

retention, review of study materials), and dissemination of study results. 

Theme Five: Intervention Research, Dissemination, and 

Implementation 

This theme addresses methods to improve the methodological rigor of implementation science 

in AD/ADRD interventional research and facilitate the spread of evidence-based interventions 

relating to dementia care and caregiving that targets individuals, dyads, or organizations, 

including strategies to motivate systems change to promote adoption and sustainability. 

5.1 Identify strategies to shorten the timeline of translating innovative AD/ADRD care 

services for widespread use. Research should assess contextual and structural features 

of the environment and organizations that catalyze interaction, collaboration, and 

coordination of interdisciplinary teams and organizations. 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 36 
 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

5.2 Identify strategies that create market demand for the rapid implementation and 

diffusion of evidence-based AD/ADRD care models within various payment models. 

Market demand encompasses both individuals and families as well as public and private 

payers. 

5.3 Conduct innovative research using designs that increase the generalizability of 

research findings and promote the translation of effective dementia programs and 

services to real-world settings. Diverse methodologies should be encouraged, including 

pragmatic trials, adaptive trials, quasi-experimental designs, hybrid designs, mixed 

methods, rapid-cycle iterative design, and agile process measurement. Person-centered 

outcomes research models with stakeholder engagement and practice-based research 

models should be considered to facilitate this translation. 

5.4 Develop and evaluate approaches to incorporate AD/ADRD-focused intervention 

strategies into the current and future workflow of busy primary care settings. Such 

strategies may refer to tools such as screening and assessment instruments or care 

processes such as counseling or advance care planning. 

5.5 Conduct research to understand the effects of strategies to financially compensate 

community-based organizations that have essential roles in the care of PLWD. 

5.6 Conduct research to evaluate how principles of design, implementation, and diffusion 

that integrate science and engineering can promote dissemination of care innovations 

for PLWD. Such research should draw on the science of improvement and process 

evaluation techniques such as agile methodology and Plan-Do-Study-Act cycles. 

5.7 Develop and evaluate tools, processes, and strategies to reduce health disparities in 

AD/ADRD care by disseminating evidence-based models. Such research should address 

disparities by geography (e.g., urban vs. rural), providers (e.g., federally qualified health 

centers and those disproportionately serving stigmatized and lower socio-economic 

status groups), and underserved populations. 

5.8 Develop scalable, sustainable, and actionable AD/ADRD interventions that payers and 

providers can use “off the shelf” in practice. Such efforts should provide evidence on 

quality, safety, and financial return on investment, and guidelines on how to implement 

the intervention, including key contextual factors. 

Theme Six: Research Resources, Methods, and Data Infrastructure 

This theme includes a focus on methods, data, and processes to facilitate cross-cutting, highimpact research including approaches to intervention research (including pragmatic trials) and 

observational studies to enable monitoring of progress toward achieving research 

implementation milestones. Issues include survey infrastructure, ethical frameworks, costs, 

access to data from electronic health records. 

6.1 Develop a public-private consortium to support a national data repository and 

technical assistance infrastructure that promotes interventions to improve the lives of 

PLWD and their care partners. The repository would include secure data from existing 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 37 
 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

research, access techniques, research and analytic models, and implementation and 

dissemination strategies. It would be curated and updated with technical assistance 

available to researchers, health systems, and policymakers to optimize utilization of the 

repository, informed by an engaged research model. 

6.2 Undertake research to test the value of machine learning and artificial intelligence 

approaches to identify PLWD and their care partners that may be used to efficiently 

measure their needs for services, and outcomes of care. Diverse sources for this work 

may include electronic health records (EHR), health insurance claims, as well as financial 

credit and driving records. Attention should be devoted to understanding the ethical 

and other related implications of such approaches across various types of dementia 

etiologies and subgroups of PLWD who are at risk for disparities in access to AD/ADRD 

care. 

6.3 Conduct research on methods to engage payer and provider organizations in applied 

research on dementia-related care, services, and supports. 

6.4 Develop measures and approaches to monitor the adoption, dissemination, and 

effectiveness of dementia capable communities on outcomes that matter to PLWD, 

their care partners, payers, and society. 

6.5 Evaluate new and modified measures for identifying and characterizing PLWD who 

may benefit from dementia care interventions being tested in population-based and 

healthcare system-based studies and for monitoring progress toward identified 

milestones at the national, state, and community-levels. 

6.6 Promote research that integrates different techniques to identify cognitive impairment 

and disease staging for inclusion in research studies. Such research should draw on 

imaging, biomarkers, cognitive testing, and functional assessment and assess the 

effectiveness for persons with various types of dementia etiologies. Disease includes 

common and specific rare forms of AD/ADRD. 

6.7 Develop infrastructure for public health efforts and population-based studies of PLWD 

and care partners to monitor progress toward meeting national, state, and community 

milestones, including key subpopulations of interest. Needed infrastructure includes 

measures, surveys, and reporting systems and should prioritize capacity to report 

progress toward reducing health disparities. 

6.8 Develop and test new approaches to engaging persons with cognitive impairments in 

research who may not have the capacity to provide consent using traditional 

standards. Conduct research on the use of assent and dissent, with special 

consideration for understanding capacity, beneficence, and access to research both for 

individuals with dementia and their care partners. 

6.9 Conduct research to guide Institutional Review Boards and ethics committees on how 

to facilitate the appropriate collection of self-report data from PLWD and their care 

partners. 

6.10 Develop secure and ethical approaches to data collection through home monitoring. 

Appendix 1: 2020 Summit Research Gaps and Opportunities Page 38 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Appendix 2: Glossary 

Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) refers to the most 

common forms of dementia. While AD is the most common dementia diagnosis, ADRDs share 

many cognitive and pathological features with and can be difficult to distinguish from AD. In 

fact, more often than not, patients with a diagnosis of Alzheimer’s disease present with 

different mixtures of brain pathologies, complicating both the diagnosis and the treatment. 

ADRDs include frontotemporal degeneration, Lewy body dementia, vascular contributions to 

cognitive impairment and dementia, and mixed etiology dementias. See 

https://www.ninds.nih.gov/current-research/focus-disorders/alzheimers-related-dementias 

and https://www.nia.nih.gov/health/alzheimers/related-dementias for more information. 

Persons living with dementia (including AD/ADRD) (PLWD) refers to all those who are 

currently living with a diagnosis of AD/ADRD and those with cognitive impairment consistent 

with dementia who have not yet received a diagnosis, including those with intellectual 

disabilities. 

Care coordination is the deliberate organization of patient care activities between two or more 

participants (including the patient) involved in a patient's care to facilitate the appropriate 

delivery of health care services. Organizing care involves the marshalling of personnel and other 

resources needed to carry out all required patient care activities and is often managed by the 

exchange of information among participants responsible for different aspects of care.10 Care 

coordination for PLWD can range from establishing a dementia care diagnosis, through personcentered management of dementia and other conditions, to end-of-life, palliative care, and 

hospice. 

Care partner refers to a person with whom the PLWD has a reciprocal relationship who is 

involved in co-managing the demands of AD/ADRD through such activities as providing 

emotional support and participating in decision-making. Most often, these are family 

relationships. Care partners may or may not be involved in the provision of hands-on assistance 

with daily activities as a caregiver. The term caregiver can refer to family members, neighbors, 

friends, fictive kin, or anyone else providing unpaid health and function-related assistance to 

persons living with dementia. For the purposes of this report, the term care partner is used 

throughout for consistency, and its use means care partners and/or caregivers. 

Clinicians refers to state-licensed physicians, psychologists, nurses, advance practice providers, 

pharmacists, physical therapists, occupational therapists, social workers, and other skilled 

health care workers who are credentialed to care for individual patients. 

Direct care workers refers to paid caregivers who provide hands-on long-term care and 

personal assistance to persons who are living with disabilities, including nursing assistants and 

nursing aides who generally work in nursing homes, home health aides who assist people in 

10 Source: https://www.ahrq.gov/ncepcr/care/coordination/atlas/chapter2.html 

Appendix 2: Glossary Page 39 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

their homes or in community settings (including people who may be receiving skilled home 

health care), and personal care aides who work in private or group homes. 

Disparities are preventable significant differences in the burden of disease, injury, violence, or 

opportunities to achieve optimal health that are experienced by socially disadvantaged 

populations across dimensions such as race or ethnicity, gender, education, income, disability, 

geographic location (e.g., rural or urban), or sexual orientation. Health disparities are directly 

related to the historical and current unequal distribution of social, political, economic, and 

environmental resources, including access, use, and quality of care. 

Heterogeneity refers to variability in the trajectory, experience, and consequences of AD/ADRD 

based on disease type, age of onset, disease severity, presence of complex co-occurring 

conditions, familial relationship (e.g., spouse/partner, adult child, sibling, in-law), race and 

ethnicity, socioeconomic status, health disparities, gender identity, sexual orientation, and 

geography. 

Long-term services and supports (LTSS) encompass the broad range of paid and unpaid medical 

and personal care assistance that people may need to accommodate a short- or long-term 

disability. LTSS may be provided in nursing and other residential care facilities, in senior 

housing, or in the broad range of community settings, including individuals’ homes. 

Personalized outcomes refers to measures that reflect individual preferences and/or goals that 

can be used to tailor and individualize services and supports. 

Pre-clinical diagnosis refers to individuals who have measurable brain changes that indicate the 

earliest signs of Alzheimer’s disease (biomarkers), but who have not yet developed symptoms 

such as memory loss. 

Research gaps and opportunities refers to scientific areas that merit research attention, for 

which additional scientific investigation holds promise for propelling advances in policy, 

practice, and care that would improve the lives of persons who are affected by ADRD and their 

care partners. 

Social determinants of health (SDOH) are the conditions in which people are born, grow, live, 

work, and age shaped by the distribution of money, power, and resources at global, national, 

and local levels. 

Appendix 2: Glossary Page 40 
 

 

Virtual Summit on Dementia Care July - August 2020 

Appendix 3: Summit Agendas 

National Research Summit on Care, Services, and Supports for Persons Living with 

Dementia and Their Caregivers 

Summit Series Virtual Meeting 1 

Friday, July 10, 2020 

1:30 to 4:30 p.m. Eastern Time 

1:30 Welcome and Summit Series Purpose 

Speakers: Jennifer Wolff and David Reuben 

1:40 Setting the Stage – Perspectives 

Speakers: Richard Hodes, Lonni Schicker, Katie Brandt, and Arne Owens 

2:00 Progress Since 2017 Summit 

Speaker: Laura Gitlin 

Impact of Dementia (Theme 1) 

2:10 Introduction: María Aranda and Ian Kremer 

2:15 Research Presentation 1: Population trends of Alzheimer’s disease and related 

dementias 

Speaker: Rachel Whitmer 

2:25 Research Presentation 2: Disparities in health, services, and interventions for PWD and 

family caregivers: Evidence and future directions 

Speaker: Ladson Hinton 

2:35 Research Presentation 3: Economic impact of Alzheimer’s disease and value of delaying 

onset for individuals, caregivers, and society 

Speaker: Julie Zissimopoulos 

2:45 Theme Co-Chairs Present Gaps and Opportunities 

2:50 Panelist Perspectives on Gaps and Opportunities 

• Laura Trejo 

• Cynthia Huling Hummel 

3:00 Moderated Q&A and Discussion 

3:15 BREAK 

Appendix 3: Summit Agendas Page 41 
 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

Participation of Persons with Dementia and their Caregivers in Research (Theme 4) 

3:25 Introduction: Lori Frank and Jason Karlawish 

3:30 Research Presentation 1: Reporters, data sources, and outcomes 

Speaker: Lee Jennings 

3:40 Research Presentation 2: Nomenclature: Challenges, issues, and a plan 

Speaker: Ron Petersen 

3:50 Research Presentation 3: PLWD and caregiver research engagement 

Speaker: Tabassum Majid 

3:55 Theme Co-Chairs Present Gaps and Opportunities 

4:00 Panelist Perspectives on Gaps and Opportunities 

• Andrea Gilmore-Bykovskyi 

• Lonni Schicker 

4:10 Moderated Q&A and Discussion 

4:25 Closing Remarks 

Speakers: Jennifer Wolff and David Reuben 

4:30 Adjourn 

Summit Series Virtual Meeting 2 

Tuesday, July 21, 2020 

1 to 4:30 p.m. Eastern Time 

1:00 Welcome and Opening Remarks 

Speakers: Jennifer Wolff and David Reuben 

Services and Supports in Medical Care Settings for Persons Living with Dementia (Theme 3) 

1:05 Introduction: Susan Beane and Chris Callahan 

1:10 Research Presentation 1: Providing high-quality care in medical care settings 

Speaker: Josh Chodosh 

1:20 Research Presentation 2: Care of persons living with dementia and with multiple chronic 

conditions 

Speaker: Cynthia Boyd 

Appendix 3: Summit Agendas Page 42 
 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

1:30 Research Presentation 3: Financing the care of persons living with dementia 

Speaker: Norma Coe 

1:40 Theme Co-Chairs Present Gaps and Opportunities 

1:45 Panelist Perspectives on Gaps and Opportunities 

• Shari Ling 

• George Hennawi 

2:00 Moderated Q&A and Discussion 

2:15 BREAK 

Long-Term Services and Supports in Home, Community, and Residential Care Settings for 

Persons Living with Dementia and their Caregivers (Theme 2) 

2:25 Introduction: Sheryl Zimmerman and Robyn Stone 

2:30 Research Presentation 1: Evidence-based person-centered practices for PLWD and their 

caregivers: What do we know, where to next? 

Speaker: Kimberly Van Haitsma 

2:40 Research Presentation 2: Understanding the long-term care workforce in a new way 

Speaker: Joanne Spetz 

2:50 Research Presentation 3: Organization and financing of long-term supports and services 

for persons living with dementia 

Speaker: David Stevenson 

3:00 Theme Co-Chairs Present Gaps and Opportunities: 

3:05 Panelist Perspectives on Gaps and Opportunities 

• Alice Bonner 

• Laurie Scherrer 

3:15 Moderated Q&A and Discussion 

3:30 BREAK 

Integration: The Present and Future of Integrated Long-Term and Medical Care 

3:40 Introduction: Robyn Stone and Chris Callahan 

Appendix 3: Summit Agendas Page 43 
 

 

 

 

 

 

 

 

 

 

Virtual Summit on Dementia Care July - August 2020 

3:45 Research Presentation 1: Building the Case for Integrating LTSS and Medical Care and 

their Financing for Persons Living with Dementia and their Families 

Speaker: Kerry Branick 

3:55 Research Presentation 2: Signals on Successful Approaches to Integrating LTSS and 

Medical Care for Persons Living with Dementia 

Speaker: Bruce Leff 

4:05 Theme Co-Chairs Present Gaps and Opportunities 

4:10 Moderated Q&A and Discussion 

4:25 Closing Remarks 

Speakers: Jennifer Wolff and David Reuben 

4:30 Adjourn 

Summit Series Virtual Meeting 3 

Thursday, August 13, 2020 

1:30 to 4:45 p.m. Eastern Time 

1:30 Welcome and Opening Remarks 

Speakers: Jennifer Wolff and David Reuben 

Emerging Topics 

1:35 Presentation 1: Emotional functioning in persons living with dementia and their care 

partners 

Speaker: Joan Monin 

1:45 Presentation 2: Technological reserve in persons with dementia: The promises and 

pitfalls of smart systems for health, well-being, and independence 

Speaker: Jared Benge 

1:55 Presentation 3: Implications of identification at preclinical stages of dementia 

Speaker: Christine Cassel 

2:05 Panelist Perspectives on Gaps and Opportunities 

• Venoreen Browne-Boatswain 

• Michael R. Belleville 

2:15 Moderated Q&A and Discussion 

2:30 BREAK 

Appendix 3: Summit Agendas Page 44 
 

 

 

Virtual Summit on Dementia Care July - August 2020 

Intervention Research, Implementation, and Dissemination (Theme 5) 

2:45 Introduction: Malaz Boustani and Michael Monson 

2:50 Research Presentation 1: Developing and disseminating evidence-based care models 

Speaker: Jürgen Unützer 

3:00 Research Presentation 2: Current challenges in implementation science, and 

implications for improving the care of persons living with dementia 

Speaker: Luci Leykum 

3:10 Research Presentation 3: Learning health systems 

Speaker: Elizabeth McGlynn 

3:20 Theme Co-Chairs Present Gaps and Opportunities 

3:25 Discussant: Lisa Onken 

3:30 Moderated Q&A and Discussion 

BREAK 

Research Resources, Methods, and Data Infrastructure (Theme 6) 

3:40 Introduction: Vincent Mor and Joanne Pike 

3:45 Research Presentation 1: Identification of people living with dementia for population 

and health care research 

Speaker: Julie Bynum 

3:50 Research Presentation 2: System level research: Pragmatic clinical trials in dementia 

Speaker: Thomas Travison 

4:00 Research Presentation 3: Consent for research involving persons with dementia: Ethical 

considerations 

Speaker: David Wendler 

4:10 Theme Co-Chairs Present Gaps and Opportunities 

4:15 Panelist Perspectives on Gaps and Opportunities 

• Joe Chung 

• Maggi Miller 

• Craig Thomas 

4:25 Moderated Q&A and Discussion 

Appendix 3: Summit Agendas Page 45 
 

 

Virtual Summit on Dementia Care July - August 2020 

4:40 Closing Remarks 

Speakers: David Reuben and Jennifer Wolff 

4:45 Adjourn 

Appendix 3: Summit Agendas Page 46 
 

 

Virtual Summit on Dementia Care July - August 2020 

Appendix 4: List of Speakers 

Summit Steering Committee 

Co-Chairs 

• Jennifer Wolff, Johns Hopkins University 

• David Reuben, University of California, Los Angeles 

Committee Members 

• María Aranda, University of Southern California 

• Susan Beane, Healthfirst 

• Malaz Boustani, Indiana University School of Medicine 

• Katie Brandt, Massachusetts General Hospital, NAPA Advisory Council Co-Chair, and 

Care Partner 

• Chris Callahan, Indiana University School of Medicine 

• Elena Fazio, National Institute on Aging 

• Lori Frank, RAND Corporation 

• Jason Karlawish, University of Pennsylvania 

• Ian Kremer, LEAD Coalition 

• Helen Lamont, Office of the Assistant Secretary for Planning and Evaluation, U.S. 

Department of Health and Human Services, NAPA Advisory Council Federal Project 

Officer 

• Katie Maslow, Gerontological Society of America 

• Michael Monson, Centene Corporation 

• Vincent Mor, Brown University 

• Joanne Pike, Alzheimer’s Association 

• Lonni Schicker, Minnesota State University (Retired), Person Living with Dementia 

• Robyn Stone, LeadingAge 

• Sheryl Zimmerman, University of North Carolina 

Research Presenters, Panelists, and Other Speakers 

• Michael R. Belleville, Person Living with Dementia 

• Jared F. Benge, Baylor Scott & White Health 

• Alice Bonner, Brown University 

• Cynthia Boyd, Johns Hopkins University 

• Kerry Branick, Centers for Medicare & Medicaid Services 

• Venoreen Browne-Boatswain, Care Partner 

• Julie P.W. Bynum, University of Michigan 

• Christine K. Cassel, University of California, San Francisco 

• Joshua Chodosh, New York University 

Appendix 4: List of Speakers Page 47 
Virtual Summit on Dementia Care July - August 2020 

• Joe Chung, Kinto Care 

• Norma Coe, University of Pennsylvania 

• Andrea Gilmore-Bykovskyi, University of Wisconsin-Madison 

• Laura Gitlin, Drexel University 

• George Hennawi, MedStar Good Samaritan Hospital 

• Ladson Hinton, University of California, Davis 

• Richard Hodes, National Institute on Aging 

• Cynthia Huling Hummel, Person Living with Dementia 

• Lee Jennings, University of Oklahoma Health Sciences Center 

• Bruce Leff, Johns Hopkins University 

• Luci Leykum, The University of Texas at Austin 

• Shari Ling, Centers for Medicare & Medicaid Services 

• Tabassum Majid, University of Maryland, Baltimore County 

• Elizabeth A. McGlynn, Kaiser Permanente School of Medicine 

• Maggi C. Miller, University of South Carolina 

• Joan K. Monin, Yale University 

• Lisa Onken, National Institute on Aging 

• Arne Owens, Office of the Assistant Secretary for Planning and Evaluation, 

U.S. Department of Health and Human Services 

• Ronald C. Petersen, Mayo Clinic 

• Laurie Scherrer, Person Living with Dementia 

• Joanne Spetz, University of California, San Francisco 

• David Stevenson, Vanderbilt University 

• Craig W. Thomas, Centers for Disease Control and Prevention 

• Thomas G. Travison, Harvard Medical School 

• Laura Trejo, City of Los Angeles Department of Aging 

• Jürgen Unützer, University of Washington 

• Kimberly Van Haitsma, The Pennsylvania State University 

• David Wendler, National Institutes of Health Clinical Center 

• Rachel Whitmer, University of California, Davis 

• Julie Zissimopoulos, University of Southern California 

Appendix 4: List of Speakers Page 48