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National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers: Pre-Summit Activities

Pre-Summit Activities

 

Scientific meetings are being conducted prior to the Summit to:

  • Provide foundational knowledge
  • Offer specific recommendations to be presented and/or discussed at Summit
  • Provide working documents (white papers)
  • Leverage and link existing scientific activity relevant to Summit

Papers for these meetings will be included on this page and on the Agenda page for sessions where they will be discussed.

 

Activities:

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.

 

Psychosocial Outcome Measures in Dementia Care

Alzheimer's Association

CO-CHAIRS:
       Sam Fazio, PhD, Alzheimer's Association
       Beth Kallmyer, MSW, Alzheimer's Association

PRESENTATION: New Directions in Measurement for Psychosocial Research on Dementia Care and Services: Report from Two Pre-Summit Meetings
No formal paper was done for this Pre-Summit activity. Outcomes were discussed in the Summit Presentation given by Dr. Fazio. [PDF Version]

 

Accelerating Development, Testing and Dissemination of Home-Based Dementia Care Interventions

BrightFocus Foundation

CO-CHAIRS:
       Constantine Lyketsos, MD, MHS, DFAPA, FAPM, FACNP, Johns Hopkins School of Medicine
       Quincy Miles Samus, PhD, MS, Johns Hopkins School of Medicine

PRE-SUMMIT PAPER: 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]

 

Systematic Review of Determinants of Behavioral Symptoms

Council for the Advancement of Nursing Science, American Academy of Nursing

CHAIR:
       Ann Kolanowski, PhD, RN, FGSA, FAAN, Pennsylvania State University

PRE-SUMMIT PAPER: 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]

 

Dementia Caregiving in the United States: A Secondary Data Analysis of the Caregiving in the U.S. 2015 Report

National Alliance on Caregiving and Alzheimer's Association

CO-CHAIRS:
       Gail Gibson Hunt, National Alliance for Caregiving
       Grace Whiting, JD, National Alliance for Caregiving

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]

 

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

National Institute on Aging

CO-CHAIRS:
       John Haaga, PhD, National Institute on Aging, Division of Behavioral and Social Research
       Elena Fazio, PhD, National Institute on Aging, Division of Behavioral and Social Research
       Lisa Onken, PhD, National Institute on Aging, Division of Behavioral and Social Research

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]

 

Caregiving and Intellectual/Developmental Disabilities: Caregivers of Persons with Intellectual and Developmental Disabilities and Dementia

National Task Group on Intellectual Disabilities and Dementia Practices, Rehabilitation Research and Training Center in Developmental Disabilities and Health, University of Illinois at Chicago, and the Alzheimer's Association

CO-CHAIRS:
       Matthew Janicki, PhD, University of Illinois at Chicago
       Tamar Heller, PhD, University of Illinois at Chicago

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]

 

Methodological Considerations in Research on Dementia Care and Services

Patient-Centered Outcomes Research Institute

CHAIR:
       Lori Frank, PhD, Patient-Centered Outcomes Research Institute

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]

PRE-SUMMIT MEETING MATERIAL: 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]

 

Diversity and Alzheimer's Disease Caregiving

University of California, Davis

CO-CHAIRS:
       Ladson Hinton, MD, University of California, Davis
       Dr. Charles DeCarli
       Oanh Meyer, PhD, MAS, University of California, Davis

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]

 

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