Overview of the report to the National Advisory Council on Alzheimer’s research, care and services

In October 2018, the U.S. Department of Health and Human Services (DHH) and the Foundation for the National Institutes of Health (through private sector support) held its first National Research Summit on Care, Services and Supports for Persons with Dementia and their Caregivers (the Summit). The report to the Advisory Council on Alzheimer’s Research, Care and Services presents the results of the Summit.

About the Summit
The Summit was inspired by the National Institute on Aging's (NIA) Alzheimer's disease research summits and the National Institute for Neurological Disease and Stroke’s (NINDS) Alzheimer’s disease-related dementias summits. These conferences are coordinated planning efforts that respond to DHH’s National Plan to Address Alzheimer's Disease, first released in 2012 and now updated annually.

Introduction
My father is living with dementia, so the introduction to the Summit report was compelling.

“Persons living with dementia and their caregivers confront significant emotional, physical and financial stress. As dementia progresses, often over many years, individuals with the condition experience physical, cognitive and emotional changes that affect the quality of their daily life and their ability to remain engaged with meaning and purpose. The lived experience of dementia, adaptive processes of individuals, and perceived and structural stigma are important aspects of the disease process. Caregivers provide the majority of care for people with dementia in the community. These individuals often do not identify themselves as such. They may be a spouse, child, parent or friend helping a person whom they care about. However, the intensive support that is typically required for a person with dementia as the condition progresses can impact the caregiver's emotional and physical health, well-being and ability to work. Caregivers often report symptoms of depression, anxiety and financial strain, and they have poorer health outcomes than their peers who do not provide such care.”

Key sessions
There were six primary sessions at the Summit that formed the basis of its recommendations.

1. Research on care needs and supportive approaches for persons with dementia: This session explored research related to care and support for persons with dementia, including mitigating behavioral symptoms, understanding care in varied settings and caring for those living alone with the condition.

2. Research on supportive approaches for family and other caregivers: This session focused on how caring for a person with dementia affects the caregiver and what we know about effective ways to support caregivers, including examples of effective interventions, common elements of these interventions, and areas where more research is necessary.

3. Involving persons with dementia and caregivers as members of the research team: This session examined important reasons for including persons with dementia and caregivers as members of the research team in studies of dementia care, services and research, along with challenges researchers may face in doing so. These challenges include deciding in which parts of the research process they should participate, determining how to identify and recruit people with dementia and their caregivers to serve as co-researchers, and establishing how to effectively engage them as co-researchers.

4. Involving persons with dementia as study participants: This session addressed key issues related to involving persons with dementia as participants in research on care and services, including evaluating their capacity to respond to particular research questions, recruiting participants, and understanding the processes of informed consent and assent/dissent to participate in research.

5. Research on models of care for persons living with dementia and their families across the disease trajectory: This session examined comprehensive models of dementia care, factors that may be important to successful implementation, evidence about the effectiveness of various models and areas where further research is necessary.

6. Thinking outside the box: Moderators intended this session to encourage the field to reconsider how it researches dementia care, services and supports; evaluate the strengths and limitations of the methods currently used in this research; and think of new ways to do research that would show clearer, faster results.

Recommendations
The Summit produced 694 recommendations, which they organized into 12 major themes:

1. Heterogeneity of persons living with dementia and their caregivers
2. Research methods to develop more effective dementia care, services and supports
3. Caregiver relationships, roles and networks
4. Clinical approaches and the lived experience of dementia
5. Engaging persons living with dementia and caregivers in research
6. Dementia-related terminology, nomenclature and stigma: words matter
7. Comprehensive models for dementia care, services and supports
8. Strategies for scaling and disseminating existing evidence, drawing upon implementation science
9. Living places, physical and social environments, and processes of care for persons with dementia, including those who live alone
10. Financial burden and out-of-pocket costs to persons living with dementia and their caregivers
11. Ensuring an adequate and qualified workforce to support persons with dementia and their caregivers
12. Technology to support persons with dementia and their caregivers

I’ll provide a brief overview of the recommendations for each of the 12 themes, but I do encourage you to read the report in more detail. Additionally, the Summit recommended further pursuing the following areas:

  • Care and services for early-stage dementia
  • Care and services for late-stage dementia and end-of-life
  • Defining technology and better understanding its different uses for care of persons with dementia
  • Providing services to those who lack access to the health care and/or long-term care systems

Overview of the recommendations related to each Summit theme:

1. Heterogeneity of persons living with dementia and their caregivers

  • Develop accurate, up-to-date descriptive information about the characteristics, care needs and services used by persons living with dementia and their caregivers.
  • Conduct research to increase knowledge about the differences in dementia trajectories.
  • Analyze available descriptive information to increase understanding about disparities among persons living with dementia and their caregivers.
  • Disseminate information to all relevant stakeholders about differences and disparities among persons living with dementia and caregivers.

2. Research methods to develop more effective dementia care, services and supports

  • Use innovative research designs to increase the generalizability of research findings and speed up dissemination of effective dementia programs and services to real-world settings.
  • Adopt or develop research methods to study complex, multi-component programs and services intended to accommodate the many factors that affect care and service needs of persons living with dementia and their caregivers.
  • Increase the collection of self-reported data from persons living with dementia. Develop standards to determine which individuals can self-report about which outcomes and at which stages of dementia.
  • Involve end users in identifying dementia research priorities and relevant research outcomes.
  • Develop research measures that are important for studying dementia care, services and supports.
  • Develop standards for the evidence needed to determine which programs and services are ready for widespread implementation and dissemination.
  • Require research reporting that supports accurate replication of effective dementia programs and services in community and other care settings.

3. Caregiver relationships, roles and networks

  • Identify types of dementia caregivers, their needs and how they self-identify. Study the caregiving course to understand caregivers’ roles, needs, preferences, and positive and negative consequences.
  • Understand how decisions are made in caregivers and across dementia trajectories, including decisions about care, use of care plans, living arrangements, and seeking support and social services.
  • Identify the impact of dementia stage and severity on caregiver well-being, care challenges and supportive needs, and how heterogeneity of caregiver experience may affect receipt of and participation in programs.
  • Review established research on caregiver programs across dementia stages to determine what additional research or evidence is necessary to incorporate these evidence-based programs as a covered benefit

4. Clinical approaches and the lived experience of dementia

  • Identify determinants of behavioral and psychological symptoms, ascertain how persons living with dementia experience these symptoms, and determine long-term effects of evidence-based programs.
  • Conduct studies that combine pharmacological and non-pharmacological strategies to reduce dementia-related symptoms, including behavioral symptoms and functional and cognitive decline, and determine whether reducing symptoms can slow disease progression.
  • Obtain consensus as to the definitions of different cognitive strategies and understand the impacts of cognitive training.
  • Understand what outcomes are important to persons living with dementia and develop programs and services to derive consensus as to what constitutes person-centered care. Improve measures of quality of care and quality of life.
  • Understand adaptive and coping mechanisms used by persons living alone with dementia.

5. Engaging persons living with dementia and caregivers in research

  • Engage persons living with dementia and their caregivers as part of research teams studying dementia care, services and supports.
  • Develop and evaluate promising practices for increasing engagement of persons living with dementia and their caregivers as part of research teams.
  • Evaluate the impact of research engagement of persons living with dementia and their caregivers on the validity, value and credibility of the research findings.
  • Encourage the use of engaged research models in studies of dementia care, services and supports.

6. Dementia-related terminology, nomenclature and stigma: words matter

  • Analyze existing dementia-related terminology to identify confusing and stigmatizing terms. Initiate a process to select or develop terminology that will reduce stigma and support effective communication among individuals and groups.
  • Examine current awareness of and perspectives on frequently used dementia-related terms.
  • Study planned changes to the definition of Alzheimer’s disease (often referred to as “nomenclature” in this context) and evaluate the need for information about the changes for affected individuals and the public.
  • Disseminate new and revised dementia-related terminology, monitor uptake, and evaluate impacts on communication among individuals and groups, negative stereotypes and stigma.

7. Comprehensive models for dementia care, services and supports

  • Identify the core components of comprehensive models of care for persons living with dementia.
  • Identify core outcomes for measuring the effectiveness of comprehensive models of care for persons living with dementia and their caregivers.
  • Evaluate and compare comprehensive models of care and develop new models for subgroups of persons living with dementia that are not effectively served by existing models.
  • Identify and evaluate features of comprehensive models of care for persons living with dementia that may affect their real-world feasibility and acceptability in particular communities and geographic locations.
  • Examine dementia-friendly community models and evaluate their impact on persons living with dementia, their caregivers and their communities.
  • Disseminate research findings on comprehensive models of care and dementia-friendly community models to potential users, including persons living with dementia and their caregivers; and medical, residential and community-based providers, health care systems and payers.

8. Strategies for scaling and disseminating existing evidence, drawing upon implementation science

  • To make evidence-based programs and services for persons living with dementia and their caregivers more widely available across the country, researchers and program developers should begin planning for dissemination and sustainability early in the process of program development.
  • Conduct research to increase understanding about organizational readiness and capacity to implement and sustain evidence-based programs and services for persons living with dementia.
  • Study approaches to optimize working relationships between health care and community-based organizations that are critical to providing the coordinated medical care and social services necessary for persons living with dementia and their caregivers.
  • Examine dementia-related costs to all payers, the division of costs among payers and cost shifting.
  • Identify payment models and financial incentives to support dissemination and sustainability of evidence-based programs and services for persons living with dementia.
  • Develop and evaluate approaches to increase willingness to use, provide and/or pay for evidence-based programs and services among persons living with dementia, their caregivers and provider organizations.
  • Identify methods that individual communities can use to begin planning for the array of care, services and supports required to meet the needs of residents living with dementia and their caregivers.

9. Living places, physical and social environments, and processes of care for persons with dementia, including those who live alone

  • Develop up-to-date, descriptive information about the types of places where persons with dementia live; the number, proportion and characteristics of persons with dementia who live in each type of place; and their needs for and use of care, services and supports.
  • Conduct studies to increase understanding about transitions of persons with dementia from one type of living place to another or one level of care to another in multi-level facilities.
  • Develop and evaluate approaches to improve physical and social environments and processes of dementia care that will be useful across various types of living places, rather than focusing on just one type of living place.
  • Conduct research to increase understanding about how physical and social environments and processes of care can help balance autonomy, independence and choice versus safety and protection from risk for persons with dementia in all types of living places, including persons with dementia who live alone.
  • Disseminate up-to-date descriptive information to relevant groups about where persons with dementia live.

10. Financial burden and out-of-pocket costs to persons living with dementia and their caregivers

  • Develop comprehensive, descriptive information about dementia-related out-of-pocket costs to persons living with dementia and their caregivers.
  • Analyze the relationship of dementia-related out-of-pocket costs to objective and perceived financial burden and examine other factors that may affect that relationship.
  • Develop information about the impact of dementia-related out-of-pocket costs and financial burden on persons living with dementia and their caregivers. Identify approaches to address negative effects.
  • Develop and evaluate information and educational materials to improve financial decisions and reduce dementia-related out-of-pocket costs and financial burden.

11. Ensure an adequate and qualified workforce to support persons with dementia and their caregivers

  • Research the impacts of the ever-increasing aging population on the workforce infrastructure and numbers, particularly across regions and workforce type, and develop a solid evidence base for issues around recruitment and retention of a dementia care workforce.
  • Examine and include the interdisciplinary team in all phases of research development and implementation, and account for the real-world nature of services to persons living with dementia and their caregivers, such that varied professional and non-professional groups are targeted.
  • Define “effective training” for the workforce, including determining what training will increase knowledge and skills for dementia care.
  • Determine how to refine existing workforce models to improve the efficiency and cost-effectiveness of dementia care. Study impediments to its implementation in the existing care system and develop a better understanding of how these models may affect current infrastructure challenges.

12. Technology to support persons with dementia and their caregivers

  • Develop and evaluate technologies specifically with and for persons living with dementia and their caregivers at various stages of the person’s dementia and across various settings. Expand the currently available array of technologies and incorporate novel approaches to increase reach.
  • Develop a solid evidence base regarding the efficacy and effectiveness of technology-based solutions for persons living with dementia across various functional categories of use. Study how technology can assist caregivers to better manage both the care needs of those they care for and their own needs.
  • Research which types of technology applications are optimal to support various functions for various user groups. Determine the impact of technology use on providing high-quality care to persons living with dementia and their caregivers and understand how to best integrate these applications within existing care models.
  • Determine whether heterogeneous populations of persons living with dementia and their caregivers are able to access and utilize technology applications. Determine what technology is unavailable and why.

In closing
I encourage you to review the full Summit report as well as the 2017 National Plan.

The stated goals of the Summit were “to identify what we know and what we need to know in order to accelerate the development, evaluation, translation, implementation and scaling up of comprehensive care, services and supports for persons with dementia, their families and other caregivers.” Understanding these will help us all to intentionally be a larger part of the improvement of quality of care and outcomes across care settings, including quality of life and the experience of persons with dementia and their caregivers.

Please also visit the Office of The Assistant Secretary for Planning and Evaluation’s National Alzheimer’s Project Act and the Advisory Council on Alzheimer's Research, Care, and Services’ meeting minutes and resources.

Rebecca Adelman, PLLC, Esq. – Adelman is an entrepreneur and founding shareholder of Hagwood Adelman Tipton PC and practices in the firm’s Memphis, Tennessee, office. For nearly 30 years, Rebecca has concentrated her practice in insurance defense litigation representing national insurance carriers and self-insureds with a concentration in health care law. She also has an active business and employment practice. Please feel free to contact her at radelman@hatlawfirm.com, visit www.rebeccaadelman.com or follow her on Instagram @rebecca_adelman.

Rebecca Adelman