National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers: Agenda and Session Material

11/08/2017

Agenda and Session Co-chairs, Speakers and Panelists

This page provides the Agenda for the 2-day Research Summit on Dementia Care. In addition to times, session titles and speakers, links to session papers, speaker biographies, and presentation materials are being added as they become available.

Helpful Summit information:

 

Sessions:

DAY ONE

DAY TWO

 

Goal

The goal of this research summit is to identify what we know and what we need to know to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers. The Summit is focused on research that is needed to improve quality of care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers

 

Crosscutting Themes

  • Access
  • Diversity (gender, race, ethnicity, culture, language, literacy, sexual orientation, socioeconomic status, geographic location, and living situation-alone or with a caregiver)
  • Disparities
  • Etiologies and disease stages
  • Care settings (home, community, assisted living, nursing home, and medical/healthcare settings)
  • Employment, training, and workforce issues
  • Technology

 

Anticipated Outcomes

  • Research recommendations and priorities to inform federal agencies, foundations, and other private-sector organizations that fund research on dementia care, services, and supports
  • Identification of evidence-based programs, strategies, and approaches that can be used now to improve care, services, and supports
  • Identification of methodologies to involve individuals with dementia and families in shaping research and participating in studies
  • Research milestones to track and guide acceleration and advancement of evidence-informed care and services
  • White papers, briefs, and publications summarizing Summit research recommendations and outcomes; possible post-Summit activities to advance policy and practice implications

Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.


 

Day One - October 16, 2017

Registration
7:00am - 8:00am

 

Welcome and Introductory Remarks
8:00am - 8:30am

Summit Co-Chairs

Laura N. Gitlin, PhD, Johns Hopkins University [biography] [presentation]

Katie Maslow, MSW, Gerontological Society of America [biography] [presentation]

 

Sponsor Remarks

Advancing Research Toward Care and Support Solutions
     Harry Johns, Alzheimer's Association [biography]

The Imperative of Diverse Voices and Collaborative Decision Making
     Ian Kremer, JD, LEAD Coalition (Leaders Engaged on Alzheimer's Disease) [biography] [presentation]

Setting Care Goals for 2025
     George Vradenburg, UsAgainstAlzheimer's [biography] [presentation]

 

Plenary Lectures: Context for the Summit
8:30am-9:00am

View from the Advisory Council on Alzheimer's Research, Care, and Services
     Ronald C. Petersen, MD, PhD, Mayo Clinic College of Medicine [biography] [presentation]

Biomedical and Care Research in Dementia: Interdependent and Complementary
     Maria C. Carrillo, PhD, Alzheimer's Association [biography] [presentation]

 

Plenary Lectures: Demographic Framework
9:00am-10:00am

Demographics of Dementia and Dementia Caregiving: Key Changes in the Decades Ahead
     Ken Langa, MD, PhD, University of Michigan [biography] [presentation]

Deconstructing Race, Ethnicity, and Culture for ADRD Research
     Jennifer Manly, PhD, Columbia University [biography] [presentation]

Implications of Diversity in Dementia Care, Services, and Supports
     Maria Aranda, PhD, MSW, MPA, LCSW, University of Southern California [biography] [presentation]

 

BREAK
10:00am - 10:15am

 

Session I: Research on Care Needs and Supportive Approaches for Persons with Dementia
10:15am-12:30pm

Session Co-Chairs

Richard H. Fortinsky, PhD, University of Connecticut School of Medicine [biography]

Ann Kolanowski, PhD, RN, FGSA, FAAN, Colleges of Nursing and Medicine, Pennsylvania State University [biography]

Speakers

Causality Matters: Preventing and Mitigating Behavioral and Psychological Symptoms of Dementia
     Helen Kales, MD, PPA, University of Michigan [biography] [presentation]

Maintaining and Supporting Function in Persons with Dementia
     Barbara Resnick, PhD, RN, CRNP, FAAN, FAANP, School of Nursing, University of Maryland [biography] [presentation]

Slowing Cognitive Decline and Supporting Resilience in Patients with Dementia
     Davangere P. Devanand, MD, Columbia University Medical Center [biography] [presentation]

Home Is Where the Future Is: BrightFocus Foundation Consensus Panel on Dementia Care
     Constantine Lyketsos, MD, MHS, DFAPA, FAPM, FACNP, Johns Hopkins Medicine [biography] [presentation]

Dementia Care in Residential Long-Term Care
     Sheryl Zimmerman, PhD, University of North Carolina at Chapel Hill [biography] [presentation]

Technologies for Assessment and Interventions to Improve and Accelerate Dementia Care Research
     Jeffrey Kaye, MD, Oregon Health & Science University [biography] [presentation]

Brief Reports and Commentaries

Living Well with Dementia
     Melanie (Lonni) Schicker, EdD, MHSA, RN, Persons Living with Dementia Stakeholder Group [biography] [presentation]

Researching Rhythms of Daily Life: The Role of Sleep and Daily Activity in Entraining Circadian Patterns
     Nancy A. Hodgson, PhD, RN, FAAN, University of Pennsylvania School of Nursing [biography] [presentation]

Physical and Social Environments for Care and Services: Research Recommendations for the Design of Care Settings
     Margaret Calkins, PhD, EDAC, Mayer-Rothschild Foundation [biography] [presentation]

Living Alone with Dementia: Identification, Unmet Needs, and Safety Concerns
     Elizabeth Gould, MSW, National Alzheimer's and Dementia Resource Center, RTI International [biography] [presentation]

Caregiving and Intellectual and Developmental Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities
     Tamar Heller, PhD, University of Illinois at Chicago [biography] [presentation]

Moderated Audience Discussion

Supporting Session Papers

BACKGROUND PAPER: Research on Care Needs and Supportive Approaches for Persons with Dementia

This paper focuses on research related to care and support for people with dementia. [HTML Version] [PDF Version]

PRE-SUMMIT PAPER: Caregiving and Intellectual and Developmental Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities

This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer's Association. The purpose was threefold: (1) to assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities; (2) to translate the contributions of these findings to the greater dementia care agenda; and (3) to promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform. The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD. Considered were five major areas related to care and caregiving: (1) family caregiving interventions; (2) supportive care settings; (3) effects of diversity; (4) screening and early detection; and (5) bridging service networks. Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations. [PDF Version]

 

LUNCH
12:30pm - 1:30pm

 

Session II: Research on Supportive Approaches for Family and Other Caregivers
1:30pm-3:30pm

Session Co-Chairs

Linda Teri, PhD, University of Washington [biography]

Lisa Fredman, PhD, Boston University School of Public Health [biography]

Speakers

Supporting Family Caregivers Effectively: Lessons Learned from Research
     Linda Nichols, PhD, Memphis Veterans Affairs Medical Center [biography] [presentation]

Evolving Knowledge About the Health Effects of Caregiving to Persons with Dementia and Other Conditions
     Lisa Fredman, PhD, Boston University School of Public Health [biography] [presentation]

Dyadic Intervention: From Early Stage to End of Life
     Carol J. Whitlatch, PhD, Benjamin Rose Institute on Aging [biography] [presentation]

The Use of Technology in the Support of Family Caregivers
     Sara Czaja, PhD, University of Miami [biography] [presentation]

Innovating the Next Generation of Dementia and Alzheimer's Disease Care Interventions: Addressing the Needs of Persons Living with Dementia, Caregivers, and Care Providers
     Vincent Mor, PhD, Brown University [biography] [presentation]

Brief Reports and Commentaries

Personal Perspectives on Family Caregiving
     Sowande Tichawonna, Family Caregiver Stakeholder Group [biography] [presentation]

Dementia Family Caregiving: Recommendations from a Conference to Advance Interventions in Diverse Populations
     Oanh Meyer, PhD, MAS, University of California, Davis, School of Medicine [biography] [presentation]

Equity: A Powerful Force in the Future of Sexual and Gender Minority Dementia Caregiving
     Karen Fredriksen Goldsen, PhD, University of Washington [biography] [presentation]

Dementia Caregiving in the U.S. Research Recommendations
     Gail Gibson Hunt, National Alliance for Caregiving [biography] [presentation]

Family Caregiving's Impact on Women
     Mary E. Worstell, MPH, U.S. Department of Health and Human Services, Office of the Assistant Secretary for Health [biography] [presentation]

Moderated Audience Discussion

Supporting Session Papers

BACKGROUND PAPER: Research on Supportive Approaches for Family and Other Caregivers

This paper examines how caring for a person with dementia affects the caregiver and what is known about effective ways to support caregivers, including examples of effective interventions, common elements of these interventions, and areas where more research is most needed. [HTML Version] [PDF Version]

PRE-SUMMIT PAPER: Dementia Caregiving in the U.S.: Research Recommendations

The following recommendations draw from findings in the Dementia Caregiving in the U.S. (February 2017) report which analyzes the experiences of providing unpaid care in the United States to a relative or friend diagnosed with Alzheimer’s disease, dementia, or other mental confusion, with the goals of both understanding the experiences of people caring for someone with dementia and identifying approaches to enhance and support this unique caregiving experience. [PDF Version]

PRE-SUMMIT PAPER: Dementia Family Caregiving: Recommendations from the University of California Davis Conference, Alzheimer's Disease Diversity and Disparities in Family Caregiving: Progress and Future Challenges

The goal of this one-day conference was: (1) to present and discuss the current caregiving climate for individuals caring for family members with Alzheimer's disease and other dementias and how to foster resilience, particularly in diverse populations; (2) to present cutting-edge research, evidence based interventions, and novel cultural adaptations for diverse caregivers and their families; and (3) to articulate future directions in the field of disparities in caregiving. This Pre-Summit activity was an opportunity to hear scientific presentations from leading experts in the field of dementia caregiving in diverse communities as well as to have scholars, funding agencies, and associations network with one another. The conference also included a poster session featuring work on theory, research, practice, and training/education issues in dementia caregiving, particularly as it related to diversity and disparities. [PDF Version]

PRE-SUMMIT PAPER: Innovating the Next Generation of Dementia and Alzheimer's Disease Care Interventions: Addressing the Needs of Persons Living with Dementia, Caregivers, and Care Providers

The Division of Behavioral and Social Research (BSR) at the National Institute on Aging (NIA), National Institutes of Health (NIH), convened a meeting on July 31 and August 1, 2017, to obtain expert opinion on the state of research for evidence-based care interventions that target persons living with dementia and/or their caregivers, and to articulate a future research agenda. Presenters and discussants were asked to classify the various formal and informal care interventions in terms of the populations, outcomes targeted, and the settings in which they have been studied (e.g., at home, assisted living, nursing homes, physician's offices, community settings), and to present examples of specific interventions. Another meeting objective was to identify the barriers to adoption of evidence-based interventions and strategies to overcome such barriers. Invited experts presented a range of original research, including interventions in mouthcare, caregiver sleep health, dementia care mapping, emotional functioning, and mindfulness, and findings from systematic reviews to illuminate gaps, promising directions, and future needs for the next generation of Alzheimer's and dementia care interventions. They also described intervention development research models, innovative research designs, and methods for addressing scalability, diffusion, and translation. [PDF Version]

 

Session III: Involving Persons with Dementia and Caregivers as Members of the Research Team
3:30pm-5:00pm

Session Co-Chairs

Mark Snowden, MD, MPH, University of Washington [biography]

Lee Jennings, MD, MSHS, University of Oklahoma [biography]

Speakers

Principles and Practices for Engagement in Research
     Lori Frank, PhD, Patient-Centered Outcomes Research Institute (PCORI) [biography] [presentation]

Challenges and Solutions for Involving Persons with Dementia and Dementia Family Caregivers as Members of the Research Team
     Jason Karlawish, MD, University of Pennsylvania, Penn Memory Center [biography] [presentation]

European Perspectives and Experience in Involving Persons with Dementia and Dementia Family Caregivers as Members of the Research Team
     James Pickett, PhD, Alzheimer's Society (UK) [biography] [presentation]

Brief Reports and Commentaries

Person with Dementia Perspective on Participating as a Member of the Research Team
     Teresa Webb, RN, Persons Living with Dementia Stakeholder Group [biography] [presentation]

The Who, What, Why, When, and Where of Care Partners in Research
     Sharon Hall, Family Caregiver Stakeholder Group [biography] [presentation]

Moderated Audience Discussion

Supporting Session Papers

BACKGROUND PAPER: Including People with Dementia and Their Caregivers as Co-Researchers in Studies of Dementia Care and Services

This paper addresses several key challenges that researchers face in working with people with dementia and their caregivers as co-researchers in studies of dementia care and services, including setting the level of involvement that people with dementia and their caregivers will have in the research, determining how to identify and recruit people with dementia and their caregivers to serve as co-researchers, and establishing how to effectively engage people with dementia and their caregivers as co-researchers. [HTML Version] [PDF Version]

PRE-SUMMIT PAPER: Dementia Methods Pre-Summit Summary and Recommendations

The goal of the Dementia Methods Pre-Summit was to efficiently drive the field toward a methods research agenda, by focusing stakeholder attention on strengths and limitations of methods currently used in dementia intervention research. Pre-Summit participants were encouraged to think of this goal as a "roadmap" for specific action steps. The participants represented experts of many different types: researchers whose careers are devoted to the study of interventions and/or to the study of research methods; people experiencing dementia themselves and those experiencing it through a loved one; and federal health policy makers; health and aging policy advocacy organizations; and research funders. The opportunity that this meeting provided for joint conversation and collaborative agenda setting is unique. A key focus of this meeting was on patient engagement in research, consistent with the patient-centered comparative effectiveness research that PCORI funds. This report summarizes the findings and recommendations from this meeting. [PDF Version]

 

Day Two - October 17, 2017

Registration
7:00am - 7:55am

 

Introduction to Day
7:55am - 8:00am

Summit Co-Chairs

Laura N. Gitlin, PhD, Johns Hopkins University [biography]

Katie Maslow, MSW, Gerontological Society of America [biography]

 

Plenary Session: Nomenclature: Words Matter
8:00am-8:30am

Speakers

The Terminology Issues
     Ronald C. Petersen, MD, PhD, Mayo Clinic College of Medicine [biography] [presentation]

Effect of Stigma on Access to Care and Services
     Angela Taylor, Lewy Body Dementia Association [biography] [presentation]

Perspectives of a Family Affected by Dementia
     Edward K. Kaplan, PhD, Professor Emeritus, Brandeis University; Persons Living with Dementia Stakeholder Group [biography] [presentation]
     Janna Kaplan, MSc, Brandeis University; Family Caregiver Stakeholder Group [biography] [presentation]

 

Session IV: Involving Persons with Dementia as Study Participants
8:30am-9:45am

Session Co-Chairs

Darby Morhardt, PhD, LCSW, Northwestern University [biography]

David M. Bass, PhD, Benjamin Rose Institute on Aging [biography]

Speakers

Clinical Heterogeneity of Dementia and Impact on Research Participation
     Sandra Weintraub, PhD, Northwestern University [biography] [presentation]

Work with Us! We Want to Help: Perspectives of a Person with Dementia on Involvement as a Study Participant
     Cynthia Huling Hummel, BS, MDiv, DMin, Persons Living with Dementia Stakeholder Group [biography] [presentation]

Role of Research in Examining and Understanding the Illness Experience of Individuals with Dementia
     Katherine S. Judge, PhD, Cleveland State University [biography] [presentation]

Measuring Disease Impact on People Living with Dementia: PCORI Pre-Summit Summary [presentation]
     Darby Morhardt, PhD, LCSW, Northwestern University [biography]
     Lisa Gwyther, MSW, LCSW, Duke University [biography]

Moderated Audience Discussion

Supporting Session Papers

BACKGROUND PAPER: Challenges in Involving People with Dementia as Study Participants in Research on Care and Services

This background paper addresses key issues related to involving people with dementia as participants in research on care and services, including recruiting, research ethics, the processes of informed consent and assent/dissent to participate in research, and evaluating the capacity of people with dementia to participate in studies. Until the 1990s, research largely ignored the perspectives of people with dementia. This omission from the research was supported by commonly held views of people with dementia as incompetent and incapable of providing reliable reports, and a biomedical focus on neuropathology with limited attention to personal histories, social interactions, and social contexts. However, these views fail to account for the abilities and diversity of people with dementia. [HTML Version] [PDF Version]

PRE-SUMMIT PAPER: Dementia Methods Pre-Summit Summary and Recommendations

The goal of the Dementia Methods Pre-Summit was to efficiently drive the field toward a methods research agenda, by focusing stakeholder attention on strengths and limitations of methods currently used in dementia intervention research. Pre-Summit participants were encouraged to think of this goal as a "roadmap" for specific action steps. The participants represented experts of many different types: researchers whose careers are devoted to the study of interventions and/or to the study of research methods; people experiencing dementia themselves and those experiencing it through a loved one; and federal health policy makers; health and aging policy advocacy organizations; and research funders. The opportunity that this meeting provided for joint conversation and collaborative agenda setting is unique. A key focus of this meeting was on patient engagement in research, consistent with the patient-centered comparative effectiveness research that PCORI funds. This report summarizes the findings and recommendations from this meeting. [PDF Version]

 

Session V: Research on Models of Care for Persons Living with Dementia and Their Families Across the Disease Trajectory
9:45am-12:30pm

Session Co-Chairs

Vincent Mor, PhD, Brown University [biography]

David B. Reuben, MD, University of California, Los Angeles [biography]

Dementia-Specific Models of Care

Components of a Comprehensive Care Model for Dementia
     David M. Bass, PhD, Benjamin Rose Institute on Aging [biography] [presentation]

Health System-Based Models of Dementia Care: Characteristics, Challenges, and Opportunities
     Zaldy S. Tan, MD, MPH, University of California, Los Angeles [biography] [presentation]

Community-Based Models of Dementia Care: Characteristics, Challenges, and Opportunities
     Quincy Miles Samus, PhD, MS, Johns Hopkins School of Medicine [biography] [presentation]

General Models of Care that Include Persons with Dementia

Successful VA Innovations in Geriatric Care
     Thomas E. Edes, MD, MS, U.S. Department of Veterans Affairs [biography] [presentation]

Dementia Care Management within the Federal Financial Alignment Demonstration
     Debra L. Cherry, PhD, Alzheimer's Greater Los Angeles [biography] [presentation]

Consumer-Directed Care Models
     Julie Robison, PhD, University of Connecticut [biography] [presentation]

Service Provider and Payer Reactor Panel
     Shari M. Ling, MD, Centers for Medicare and Medicaid Services [biography]
     Steve Waring, DVM, PhD, Essentia Institute of Rural Health [biography]
     Nora Super, MPA, National Association of Area Agencies on Aging [biography]

Facilitators of Models of Care for Persons Living with Dementia and Their Families

Workforce Size, Composition, Retention, and Competence
     Gregg Warshaw, MD, University of North Carolina at Chapel Hill [biography] [presentation]

Quality Measures
     Gary Epstein-Lubow, MD, Brown University/Hebrew SeniorLife [biography]
     Louise Phillips, MD, Persons Living with Dementia Stakeholder Group [biography]
          with off-site contribution from Brenda Nicholson, MD, Persons Living with Dementia Stakeholder Group [biography] [presentation]

Scaling Up: Research to Promote Diffusion of Successful Models
     David B. Reuben, MD, University of California, Los Angeles [biography] [presentation]

Moderated Audience Discussion

Supporting Session Papers

BACKGROUND PAPER: Research on Care Coordination for People with Dementia and Family Caregivers

This background paper examines select care coordination models that have been used with older adults, with a focus on those for people with dementia; describes challenges to implementing care coordination and the factors that may be important to successful implementation; reviews evidence about the effectiveness of care coordination models; and identifies areas where further research is needed. [HTML Version] [PDF Version]

STAKEHOLDER GROUP PAPER: Research Recommendations: Top 6 Outcomes that Matter

The Stakeholder Group of Persons Living with Dementia includes 12 retired professionals from diverse backgrounds who are each committed to advocacy about dementia care, services and research. All members experience mild or moderate symptoms of a cognitive disorder. The group is co-chaired by two persons living with dementia and the leadership also includes a geriatric psychiatrist and a project coordinator experienced in leading groups of people in the early stages of a cognitive disorder. To prepare these research recommendations, monthly 90-minute meetings were conduced by videoconference, and each meeting included one or more guest senior research leaders. Between monthly meetings, a subgroup met to address logistical concerns regarding the preparation of research recommendations, responses to requests for input about specific research questions, plans for travel to participate in the Summit, and preparations to support persons living with dementia who attend the Summit. Time limitations and the personal experiences of the Group members resulted in an emphasis on research recommendations addressing early stages of illness. The Group produced recommendations categorized into the general areas of research on: new care practices to improve dementia treatment; access to care and services; strategies to promote participation in clinical trials; the experience of living with a cognitive disorder; best practices for working with family members, caregivers and proxy decision-makers; and, use of new terminology and language for public education. After a voting process, the Group decided on the following "Top 6 Outcomes that Matter." [PDF Version]

 

LUNCH
12:30pm - 1:30pm

 

Session VI: Thinking Outside the Box
1:30pm-4:45pm

Session Co-Chairs

Christopher Callahan, MD, Indiana University School of Medicine [biography]

Alan B. Stevens, PhD, Baylor Scott & White Health [biography]

Plenary Lectures: Thinking Outside the Box

Moving Forward Faster to Provide Care Together
     Christopher Callahan, MD, Indiana University School of Medicine [biography] [presentation]

Retail and the Consumer Lens: An Outside Perspective
     Raha Alavi, Nielsen Retail Services [biography] [presentation]

Translation and Implementation of Effective Care, Services, and Supports Keeping Research Relevant: Moving from RCT to Practice
      Linda Teri, PhD, University of Washington [biography] [presentation]

Adapting Effective Interventions to Accommodate Concerns About Delivery Time, Cost, and Available Staff
     Mary Mittelman, DrPH, New York University [biography] [presentation]

Evidence-Based Programs: Mapping Out the Future
     Leisa R. Easom, PhD, RN, Rosalynn Carter Institute for Caregiving [biography] [presentation]

Integrating Evidence-Based Dementia Care Programs into Existing Service and Reimbursement Systems
     Richard H. Fortinsky, PhD, University of Connecticut School of Medicine [biography] [presentation]

Innovative Research Methods and Outcomes

Research Methods for Dementia Care and Services
     Brian Mittman, PhD, Kaiser Permanente; U.S. Department of Veterans Affairs [biography] [presentation]

Stakeholder Perspectives on Research Outcomes that Matter
     Sarah Lenz Lock, JD, AARP [biography] [presentation]

New Directions in Measurement for Psychosocial Research on Dementia Care and Services: Report from Two Pre-Summit Meetings
     Sam Fazio, PhD, Alzheimer's Association [biography] [presentation]

Understanding What Matters Most to Inform Care and Services Research
     Debra Lappin, JD, Faegre Baker Daniels Consulting [biography] [presentation]

New Directions from Different Vantage Points

Moderator
     Laura N. Gitlin, PhD, Johns Hopkins University [biography] [presentation]

Discussants
     Mark Snowden, MD, MPH, University of Washington [biography]
     Alan B. Stevens, PhD, Baylor Scott & White Health [biography]
     Joseph E. Gaugler, PhD, University of Minnesota [biography]
     Alice Bonner, PhD, RN, FAAN, Massachusetts Executive Office of Elder Affairs [biography]
     Amy M. Kilbourne, PhD, MPH, Veterans Health Administration [biography]
     Lisa Onken, PhD, National Institute on Aging [biography]

Moderated Audience Discussion

Supporting Session Papers

BACKGROUND PAPER: Translation, Dissemination, Implementation, and Scaling Up of Effective Care, Services, and Supportive Approaches for Persons with Dementia and Their Caregivers

This background paper summarizes the research on the translation, dissemination, implementation, and scaling up of effective care, services, and supportive approaches for persons with dementia and their caregivers. [HTML Version] [PDF Version]

PRE-SUMMIT PAPER: Dementia Methods Pre-Summit Summary and Recommendations

The goal of the Dementia Methods Pre-Summit was to efficiently drive the field toward a methods research agenda, by focusing stakeholder attention on strengths and limitations of methods currently used in dementia intervention research. Pre-Summit participants were encouraged to think of this goal as a "roadmap" for specific action steps. The participants represented experts of many different types: researchers whose careers are devoted to the study of interventions and/or to the study of research methods; people experiencing dementia themselves and those experiencing it through a loved one; and federal health policy makers; health and aging policy advocacy organizations; and research funders. The opportunity that this meeting provided for joint conversation and collaborative agenda setting is unique. A key focus of this meeting was on patient engagement in research, consistent with the patient-centered comparative effectiveness research that PCORI funds. This report summarizes the findings and recommendations from this meeting. [PDF Version]

 

Wrap Up
4:45pm-5:00pm

Summit Co-Chairs

Laura N. Gitlin, PhD, Johns Hopkins University [biography] [presentation]

Katie Maslow, MSW, Gerontological Society of America [biography]

Speakers

Greg O'Brien, Persons Living with Dementia Stakeholder Group [biography]

Venoreen Browne-Boatswain, MEd, Family Caregiver Stakeholder Group [biography]

 


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