 |
Available Reports and Materials
Listed below is a collection of all material available regarding the Summit. This material is also be listed on other pages on this website.
SUMMIT ARCHIVE ONLINE
Day 1 Videocast Archive: https://videocast.nih.gov/summary.asp?Live=26257&bhcp=1
Day 2 Videocast Archive: https://videocast.nih.gov/summary.asp?Live=26261&bhcp=1
Material Sections:
GENERAL INFORMATION: Agenda, Biographies, Program, etc.
SESSION PAPERS & PRESENTATIONS
PLEASE NOTE: The material included here are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration, or the federal agencies and organizations involved in this Summit.
Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.
FINAL REPORT
This report to the Advisory Council on Alzheimer's Research, Care and Services presents the results of the first National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers (the Summit), held on the National Institutes of Health (NIH) campus on October 16-17, 2017. The Summit complements the National Institute on Aging's (NIA) Alzheimer's Disease Research Summits and the National Institute for Neurological Disease and Stroke (NINDS) Alzheimer's Disease Related Dementias Summits, and follows the same general structure. These conferences are coordinated planning efforts that respond to the National Plan to Address Alzheimer's Disease, first released in 2012 and now updated annually. Following the example of the earlier NIA and NINDS Summits, this Summit was intended to set national research recommendations that reflect critical scientific priorities for research on care and services for persons with dementia and their families. The Steering Committee and organizers of this Summit solicited input from nationally and internationally recognized experts and researchers, and other public and private sector stakeholders, to develop prioritized recommendations. The recommendations included in this report will help guide investments by a number of public and private stakeholders in the field of care, services, and supports, and will provide the structure for future summits. [HTML Version] [PDF Version] Originally dated April 27, 2018; small changes were made on May 16, 2018.
This paper is the recommendations section of the report National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers: Report to the National Advisory Council on Alzheimer's Research, Care, and Services. [HTML Version] [PDF Version] Originally dated April 27, 2018; small changes were made on May 16, 2018.
Final Report to the NAPA Advisory Council
This presentation was made to the NAPA Advisory Council on April 27, 2018 describing the final recommendations. [HTML Version] [PDF Version] [Video]
Additional presentations about the Care Summit were made at NAPA Advisory Council meetings leading up October 2017. All presentation materials are available at the NAPA Advisory Council on Alzheimer's Research, Care, and Services Meetings Page. The presentation above specifically discusses the Final Report.
GENERAL INFORMATION
This is a Printer Friendly version of the Summit agenda. [PDF Version]
Biographies of the Summit speakers. [PDF Version]
Viewers and attendees were asked to share with their twitter followers that they were participating in the Summit using the hashtag "Dementiacaresummit". [link to #Dementiacaresummit feed]
Full program given to in-person attendees. [PDF Version]
Summit to Focus on Dementia Care and Caregivers
Dr. Elena Fazio from the NIH/NIA Division of Behavioral and Social Research has a blog entitled "Summit to Focus on Dementia Care and Caregivers". The blog discussed the upcoming Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. [link to blog]
PRE-SUMMIT ACTIVITY PAPERS
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]
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]
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]
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]
Dementia Methods Pre-Summit Meeting
The goal of the Pre-Summit Meeting 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, and to provide recommendations to be addressed at the October 2017 Summit. In addition to other meeting material available at https://www.pcori.org/events/2017/dementia-methods-pre-summit, the following papers were disseminated to meeting attendees:
Engaging People with Dementia and Their Caregivers in Research [PDF Version]
Engaging Decision-makers [PDF Version]
Measuring Disease Impact: Collecting Information from People with Dementia and their Caregivers [PDF Version]
Study Design and Implementation: Testing Interventions for People with Dementia and their Families [PDF Version]
Study Design and Implementation: Testing Interventions for People with Dementia and their Families -- Methodologic Approaches to Dementia Research [PDF Version]
Determinants of Behavioral and Psychological Symptoms of Dementia: A Scoping Review of the Evidence
Background: Behavioral and psychological symptoms of dementia (BPSD) are prevalent in people with neurodegenerative diseases. Purpose: In this scoping review the Kales, Gitlin and Lykestos framework is used to answer the question: What high quality evidence exists for the patient, caregiver and environmental determinants of five specific BPSD: aggression, agitation, apathy, depression and psychosis? Method: An a priori review protocol was developed; 692 of 6013 articles retrieved in the search were deemed eligible for review. Gough's Weight of Evidence Framework and the Cochrane Collaboration's tool for assessing risk of bias were used. The findings from 56 high quality/low bias articles are summarized. Discussion:Each symptom had its own set of determinants, but many were common across several symptoms: neurodegeneration, type of dementia, severity of cognitive impairments, and declining functional abilities, and to a lesser extent, caregiver burden and communication. Conclusion: Research and policy implications are relevant to the National Plan to Address Alzheimer's Disease. [Nursing Outlook, PDF Version]
Home is Where the Future Is: The BrightFocus Foundation Concensus Panel on Dementia Care
Introduction: A national consensus panel was convened to develop recommendations on future directions for home-based dementia care (HBDC). Methods: The panel summarized advantages and challenges of shifting to HBDC as the nexus of care and developed consensus-based recommendations. Results: The panel developed five core recommendations: (1) HBDC should be considered the nexus of new dementia models, from diagnosis to end of life in dementia; (2) new payment models are needed to support HBDC and reward integration of care; (3) a diverse new workforce that spans the care continuum should be prepared urgently; (4) new technologies to promote communication, monitoring/safety, and symptoms management must be tested, integrated, and deployed; and (5) targeted dissemination efforts for HBDC must be employed. Discussion: HBDC represents a promising paradigm shift to improve care for those living with dementia and their family caregivers: these recommendations provide a framework to chart a course forward for HBDC. [Alzheimer's & Dementia 14 (2018) 104-114, PDF Version]
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]
POST-SUMMIT ACTIVITY PAPERS
On December 1, 2017, researchers from the Brown University School of Public Health and the Hebrew SeniorLife Institute for Aging Research convened a workshop at the National Institute on Aging to review the state of the science for pragmatic clinical trials of non-pharmacological interventions for persons with dementia and their caregivers. The goals of the workshop were to: (1) review the state of the evidence regarding the effect of interventions to improve care and outcomes for persons with dementia; (2) establish criteria for determining which interventions are ready for launch as pragmatic trials; and (3) consider the infrastructure necessary to conduct, translate, and disseminate such a program of research. [PDF Version]
Measurement Challenges in Research With Individuals With Cognitive Impairment
This State of the Science Commentary responds to the preliminary recommendation from the National Research Summit on Dementia Care, Services and Supports for Persons with Dementia and Their Caregivers to develop and identify a broad array of outcome measures (objective and subjective) that are meaningful to different stakeholders. Five significant measurement challenges that nurse scientists confront when conducting research with individuals with cognitive impairment are presented: (a) assessment of subjective memory complaints; (b) validity of self-report; (c) ecological validity of cognitive performance measures; (d) use of biomarkers (neuroimaging) for describing the biological dynamics of symptoms; and (e) effect of high variability in measurement on statistical significance. Methods for addressing these challenges are offered. [Res Gerontol Nurs. 2019; 12(1):7-15, PDF Version]
[Res Gerontol Nurs. 2019; 12(1):16-18, PDF Version]
The first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers was held on October 16-17, 2017, at the National Institutes of Health. In this paper, participants from the Summit Session on Research on Care Needs and Supportive Approaches for Persons with Dementia summarize the state of the science, identify gaps in knowledge, and offer recommendations to improve science and practice in long-term care. Recommendations cover 4 areas focused on persons living with dementia: (1) symptoms (behavioral and psychological symptoms of dementia, function, cognition, and sleep); (2) dementia care settings (physical and social environments, home, and residential care); (3) living with dementia (living well with dementia, living alone with dementia, and living with dementia and intellectual and developmental disabilities); and (4) technology as a cross-cutting theme. The participants identify 10 of the most pressing research issues based on the findings from their collective papers. Final Summit recommendations included those presented by session participants and will be used to advise federal agencies and other organizations that fund research. [J Am Med Dir Assoc. 2018 Dec; 19(12): 1047-1053, PDF Version]
RECOMMENDATIONS
This report to the Advisory Council on Alzheimer's Research, Care and Services presents the results of the first National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers (the Summit), held on the National Institutes of Health (NIH) campus on October 16-17, 2017. The Summit complements the National Institute on Aging's (NIA) Alzheimer's Disease Research Summits and the National Institute for Neurological Disease and Stroke (NINDS) Alzheimer's Disease Related Dementias Summits, and follows the same general structure. These conferences are coordinated planning efforts that respond to the National Plan to Address Alzheimer's Disease, first released in 2012 and now updated annually. Following the example of the earlier NIA and NINDS Summits, this Summit was intended to set national research recommendations that reflect critical scientific priorities for research on care and services for persons with dementia and their families. The Steering Committee and organizers of this Summit solicited input from nationally and internationally recognized experts and researchers, and other public and private sector stakeholders, to develop prioritized recommendations. The recommendations included in this report will help guide investments by a number of public and private stakeholders in the field of care, services, and supports, and will provide the structure for future summits. [HTML Version] [PDF Version] Originally dated April 27, 2018; small changes were made on May 16, 2018.
A careful review of the recommendations indicated that they fall into 11 categories, or 'buckets' as described in this presentation that was made to the NAPA Advisory Council on October 27, 2017. [HTML Version] [PDF Version] [Video]
NAPA ADVISORY COUNCIL PRESENTATION: Final Report to the NAPA Advisory Council
This presentation was made to the NAPA Advisory Council on April 27, 2018 describing the final recommendations. [HTML Version] [PDF Version] [Video]
Additional presentations about the Care Summit were made at NAPA Advisory Council meetings leading up October 2017. All presentation materials are available at the NAPA Advisory Council on Alzheimer's Research, Care, and Services Meetings Page. The presentations above specifically discuss the recommendations received during the Summit.
CROSS-CUTTING THEME PAPER: Diversity Recommendations
This paper is a summary of the research recommendations that were developed by the Diversity Cross-cutting Chair. [PDF Version]
CROSS-CUTTING THEME PAPER: Etiology Recommendations
This paper is a summary of the research recommendations that were developed by the Etiology Cross-cutting Chair. [PDF Version]
CROSS-CUTTING THEME PAPER: Technology Recommendations
This paper is a summary of the research recommendations that were developed by the Technology Cross-cutting Chair. [PDF Version]
CROSS-CUTTING THEME PAPER: Women's Issues Recommendations
This paper is a summary of the research recommendations that were developed by the Women's Issues Cross-cutting Chair. [PDF Version]
STAKEHOLDER GROUP PAPER: Family Caregiver Stakeholder Workgroup Research Recommendations
This report is a summary of the research recommendations that were developed as a result of six meetings with the members of the Family Caregiver Stakeholder workgroup. [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]
STAKEHOLDER GROUP PAPER: Final Recommendations on Outcomes that Matter
This report gives a summary of two conference calls the Stakeholder Group held, and a list of the recommendations put forth to the Summit. [PDF Version]
STAKEHOLDER GROUP PAPER: Provider Stakeholder Workgroup Recommendations
This paper outlines the Provider Stakeholder Group recommendations. [PDF Version]
STAKEHOLDER GROUP PAPER: Provider Stakeholder Workgroup Recommendations II
This paper provides accompanying comments for the Provider Stakeholder Group recommendations. [PDF Version]
STAKEHOLDER GROUP PAPER: Workforce Gaps in Dementia Education and Training
Workforce was identified by the Summit Steering Committee as one of the key stakeholder groups that should recommend research focus areas for educating and training the workforce. Informal and formal caregivers are an integral part of the dementia care workforce. More broadly, informal caregivers are defined as family members, neighbors, friends, and fictive kin who provide unpaid care, while formal caregivers, covering the spectrum from home health aides to health care professionals, have some training in the care of persons living with dementia and are paid for their services. This paper, written by the Workforce Development Workgroup (WDW), focuses on gaps in educating and training the workforce to address the goals of the Summit. The WDW is an interprofessional team of health professionals from academia, professional organizations, and the federal government with expertise in dementia workforce development. [PDF Version]
REFERENCE PAPERS
Caregiving for People with Non-Alzheimer's Dementias Issue Brief
In recent years, research on Alzheimer's disease has increased significantly, but there has been less focus on other types of dementias. Because less is known about these other dementias, under- and misdiagnosis is common, treatment protocols are lacking, and it is not clear how best to support people with these dementias and their caregivers. This paper examines what we know about caregiving as it relates to the three most common causes of dementia after Alzheimer's disease: frontotemporal dementia, Lewy body dementia, and vascular dementia. (July 2017) [PDF Version]
Examining Models of Dementia Care: Final Report
The purpose of this paper was to define care components of dementia care programs that can be used to assess a wide variety of dementia care providers, care settings, and stage of dementia. (September 2016) [HTML Version] [PDF Version]
The strain on family members and friends caring for people living with dementia can lead to adverse consequences for the individual and family, as well as the health care system itself. Caregiver support services can make a real difference in the daily lives of people with dementia and their family caregivers. Evidence-based programs hold promise to help caregiving families, but they are not widely available in communities. Without access to effective and practical care strategies, family caregivers do not benefit optimally from programs that help them manage and cope with the challenges they face. Advancing proven programs in community-based organizations, health care systems, and other real-world settings should be a priority to help families in need. (Insight on the Issues, No. 127, September 2017) [PDF Version]
People with Alzheimer's disease and other dementias (PWD) live in various settings that affect the quality of their lives and their health and well-being. This issue brief provides an overview of where PWD live and reviews use of services, quality of care, hospital and emergency department use, costs of care for PWD, and end-of-life care in various living arrangements. The issue brief concludes with some possible research agendas. (October 2017) [PDF Version]
The Use of Assistive Technology to Reduce Caregiver Burden
The Assistive Technology Act of 1998 defines assistive technology as any item, piece of equipment, or product system that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities. The most frequently cited goals for assistive technology for persons with dementia living in the community include maintaining independence, helping to ensure safety, and reducing caregiver burden, which, it is hoped, will delay or prevent costly institutionalization. No product, however, will be effective and beneficial for everyone. Given the lack of research on the effectiveness of most commercially available products, caregivers need to assess whether an individual can use it and benefit from it and introduce the product on a trial basis. Assessment to ensure that an assistive technology product matches a person's deficits, abilities, and preferences must be ongoing because dementia is characterized by progressive decline. (May 2017) [PDF Version]
SESSION PAPERS/PRESENTATIONS
PRESENTATION: Introductory Remarks [PDF Version]
PRESENTATION: Summit Goals, Topics and Cross-Cutting Themes [PDF Version]
PRESENTATION: The Imperative of Diverse Voices and Collaborative Decision Making [PDF Version]
PRESENTATION: Setting Care Goals for 2025 [PDF Version]
PRESENTATION: View from the Advisory Council on Alzheimer's Research, Care, and Services [PDF Version]
PRESENTATION: Biomedical and Care Research in Dementia: Interdependent and Complementary [PDF Version]
PRESENTATION: Demographics of Dementia and Dementia Caregiving: Key Changes in the Decades Ahead [PDF Version]
PRESENTATION: Deconstructing Race, Ethnicity, and Culture for ADRD Research [PDF Version]
PRESENTATION: Implications of Diversity in Dementia Care, Services, and Supports [PDF Version]
PRESENTATION: Causality Matters: Preventing and Mitigating Behavioral and Psychological Symptoms of Dementia [PDF Version]
PRESENTATION: Maintaining and Supporting Function in Persons with Dementia [PDF Version]
PRESENTATION: Slowing Cognitive Decline and Supporting Resilience in Patients with Dementia [PDF Version]
PRESENTATION: Home Is Where the Future Is: BrightFocus Foundation Consensus Panel on Dementia Care [PDF Version]
PRESENTATION: Dementia Care in Residential Long-Term Care [PDF Version]
PRESENTATION: Technologies for Assessment and Interventions to Improve and Accelerate Dementia Care Research [PDF Version]
PRESENTATION: Living Well with Dementia [PDF Version]
PRESENTATION: Researching Rhythms of Daily Life: The Role of Sleep and Daily Activity in Entraining Circadian Patterns [PDF Version]
PRESENTATION: Physical and Social Environments for Care and Services: Research Recommendations for the Design of Care Settings [PDF Version]
PRESENTATION: Living Alone with Dementia: Identification, Unmet Needs, and Safety Concerns [PDF Version]
PRESENTATION: Caregiving and Intellectual and Developmental Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities [PDF Version]
PRESENTATION: Supporting Family Caregivers Effectively: Lessons Learned from Research [PDF Version]
PRESENTATION: Evolving Knowledge About the Health Effects of Caregiving to Persons with Dementia and Other Conditions [PDF Version]
PRESENTATION: Dyadic Intervention: From Early Stage to End of Life [PDF Version]
PRESENTATION: The Use of Technology in the Support of Family Caregivers [PDF Version]
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 [PDF Version]
PRESENTATION: Personal Perspectives on Family Caregiving [PDF Version]
PRESENTATION: Dementia Family Caregiving: Recommendations from a Conference to Advance Interventions in Diverse Populations [PDF Version]
PRESENTATION: Equity: A Powerful Force in the Future of Sexual and Gender Minority Dementia Caregiving [PDF Version]
PRESENTATION: Dementia Caregiving in the U.S. Research Recommendations [PDF Version]
PRESENTATION: Family Caregiving's Impact on Women [PDF Version]
PRESENTATION: Principles and Practices for Engagement in Research [PDF Version]
PRESENTATION: Challenges and Solutions for Involving Persons with Dementia and Dementia Family Caregivers as Members of the Research Team [PDF Version]
PRESENTATION: European Perspectives and Experience in Involving Persons with Dementia and Dementia Family Caregivers as Members of the Research Team [PDF Version]
PRESENTATION: Person with Dementia Perspective on Participating as a Member of the Research Team [PDF Version]
PRESENTATION: The Who, What, Why, When, and Where of Care Partners in Research [PDF Version]
PRESENTATION: The Terminology Issues [PDF Version]
PRESENTATION: Effect of Stigma on Access to Care and Services [PDF Version]
PRESENTATION: Perspectives of a Family Affected by Dementia [PDF Version]
PRESENTATION: Perspectives of a Family Affected by Dementia [PDF Version]
PRESENTATION: Clinical Heterogeneity of Dementia and Impact on Research Participation [PDF Version]
PRESENTATION: Work with Us! We Want to Help: Perspectives of a Person with Dementia on Involvement as a Study Participant [PDF Version]
PRESENTATION: Role of Research in Examining and Understanding the Illness Experience of Individuals with Dementia [PDF Version]
PRESENTATION: Measuring Disease Impact on People Living with Dementia: PCORI Pre-Summit Summary [PDF Version]
PRESENTATION: Components of a Comprehensive Care Model for Dementia [PDF Version]
PRESENTATION: Health System-Based Models of Dementia Care: Characteristics, Challenges, and Opportunities [PDF Version]
PRESENTATION: Community-Based Models of Dementia Care: Characteristics, Challenges, and Opportunities [PDF Version]
PRESENTATION: Successful VA Innovations in Geriatric Care [PDF Version]
PRESENTATION: Dementia Care Management within the Federal Financial Alignment Demonstration [PDF Version]
PRESENTATION: Consumer-Directed Care Models [PDF Version]
PRESENTATION: Workforce Size, Composition, Retention, and Competence [PDF Version]
PRESENTATION: Quality Measures [PDF Version]
PRESENTATION: Scaling Up: Research to Promote Diffusion of Successful Models [PDF Version]
PRESENTATION: Moving Forward Faster to Provide Care Together [PDF Version]
PRESENTATION: Retail and the Consumer Lens: An Outside Perspective [PDF Version]
PRESENTATION: Translation and Implementation of Effective Care, Services, and Supports Keeping Research Relevant: Moving from RCT to Practice [PDF Version]
PRESENTATION: Adapting Effective Interventions to Accommodate Concerns About Delivery Time, Cost, and Available Staff [PDF Version]
PRESENTATION: Evidence-Based Programs: Mapping Out the Future [PDF Version]
PRESENTATION: Integrating Evidence-Based Dementia Care Programs into Existing Service and Reimbursement Systems [PDF Version]
PRESENTATION: Research Methods for Dementia Care and Services [PDF Version]
PRESENTATION: Stakeholder Perspectives on Research Outcomes that Matter [PDF Version]
PRESENTATION: New Directions in Measurement for Psychosocial Research on Dementia Care and Services: Report from Two Pre-Summit Meetings [PDF Version]
PRESENTATION: Understanding What Matters Most to Inform Care and Services Research [PDF Version]
PRESENTATION: New Directions from Different Vantage Points [PDF Version]
PRESENTATION: Wrap Up [PDF Version]
SESSION I BACKGROUND: 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]
SESSION II BACKGROUND: 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]
SESSION III BACKGROUND: 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]
SESSION IV BACKGROUND: 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]
SESSION V BACKGROUND: 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]
SESSION VI BACKGROUND: 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]
SESSION RECOMMENDATIONS: Summit Recommendations from the Plenary Session: Nomenclature, Words Matter
This paper is a summary of the research recommendations that were developed by the Chair of the Plenary Session: Nomenclature, Words Matter. [PDF Version]
SESSION RECOMMENDATIONS: Summit Recommendations from the Summit and Session Chairs: Day 3 Review Session
This paper is a summary of the Recommendations Review Session. This Session was held on October 18 (Day 3), and was attended by the Summit Co-Chairs and each of the Session Chairs. [PDF Version]
STAKEHOLDER GROUP PAPERS
Family Caregivers Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the Family Caregivers Stakeholder Group. [PDF Version]
Family Caregiver Stakeholder Workgroup Research Recommendations
This report is a summary of the research recommendations that were developed as a result of six meetings with the members of the Family Caregiver Stakeholder workgroup. [PDF Version]
Feedback from Health Insurance Companies Regarding Evidence-Based Research for Dementia Care
This paper summarizes feedback from the health insurance community; 10 health insurance companies were contacted and asked to participate in a short survey, 7 agreed to participate. The participating companies include both regional (from several regions of the country) and national health plans. Some offer commercial insurance, and some offer Medicaid products. All offer Medicare Advantage products. At least one of each of the carriers' Medicare Advantage products is a fully integrated Medicare and Medicaid plan, meaning it covers the full portfolio of Medicare and Medicaid covered services available to members in the state in which the product is offered. As a result, each of the carriers has significant experience serving individuals with dementia and their caregivers. [PDF Version]
Final Recommendations on Outcomes that Matter
This report gives a summary of two conference calls the Stakeholder Group held, and a list of the recommendations put forth to the Summit. [PDF Version]
Persons Living with Dementia Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the Persons Living with Dementia Stakeholder Group. [PDF Version]
Provider Stakeholder Workgroup Recommendations
This paper outlines the Provider Stakeholder Group recommendations. [PDF Version]
Provider Stakeholder Workgroup Recommendations II
This paper provides accompanying comments for the Provider Stakeholder Group recommendations. [PDF Version]
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]
Service Providers Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the Service Providers Stakeholder Group. [PDF Version]
State Programs Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the State Programs Stakeholder Group. [PDF Version]
Workforce Development Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the Workforce Development Stakeholder Group. [PDF Version]
Workforce Gaps in Dementia Education and Training
Workforce was identified by the Summit Steering Committee as one of the key stakeholder groups that should recommend research focus areas for educating and training the workforce. Informal and formal caregivers are an integral part of the dementia care workforce. More broadly, informal caregivers are defined as family members, neighbors, friends, and fictive kin who provide unpaid care, while formal caregivers, covering the spectrum from home health aides to health care professionals, have some training in the care of persons living with dementia and are paid for their services. This paper, written by the Workforce Development Workgroup (WDW), focuses on gaps in educating and training the workforce to address the goals of the Summit. The WDW is an interprofessional team of health professionals from academia, professional organizations, and the federal government with expertise in dementia workforce development. [PDF Version]
Top Six Research Outcomes: Family Caregiver Stakeholder Workgroup
This paper is a summary of a set of research outcomes developed by the Family Caregiver Stakeholder workgroup, composed of 14 members and 3 co-chairs. [PDF Version]
Summit Home Page