Reducing the Impact of Dementia in America A Decadal Survey of the Behavioral and Social Sciences (2021) / Chapter Skim
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Like other hardships, the experience of living with dementia can bring unexpected moments of intimacy, growth, and compassion, but these diseases also affect people's capacity to work and carry out other activities and alter their relationships with loved ones, friends, and coworkers. Those who live with and care for individuals experiencing these diseases face challenges that include physical and emotional stress, difficult changes and losses in their relationships with life partners, loss of income, and interrupted connections to other activities and friends.
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We examined evidence on the impacts of dementia from multiple perspectives and identified research directions for each. RISK AND PREVENTIVE FACTORS FOR DEMENTIA AND HOW THEY RELATE TO THE SOCIAL AND ECONOMIC CONDITIONS THAT AFFECT HEALTH CARE AND HEALTH OUTCOMES A large proportion of dementia could be prevented, but rigorous causal evidence with enough precision to guide evidence translation and the development of interventions is limited for nearly every domain of prevention, 1 A decadal survey is a method for engaging members of a scholarly community to identify lines of research with the greatest potential to be of use over a 10-year period in pursuit of a particular goal.
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including behavioral changes, socioeconomic conditions, and structural and interpersonal racism and discrimination. For example, robust evidence suggests that people who take such common-sense measures as eating a healthy diet, exercising regularly, maintaining a healthy weight, and reducing cardiovascular risk have a lower risk of dementia.
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Related is the need for improved measures that can be used in assessing outcomes relevant to persons living with dementia and their caregivers throughout the course of the disease. High-priority research in this area would address • improved screening and diagnosis to identify persons living with dementia, including guidance for clinicians that also addresses issues related to disclosure; • the development of guidance to support ethical and responsible decision making by and for people living with dementia; • the development and validation of outcome measures that reflect the perspectives of people living with dementia, their family care givers,2 and communities; and 2 The committee uses the terms "family caregivers" and "caregivers" to refer to those who provide any level of care, usually unpaid, to a person with dementia primarily because of their prior personal relationship with that person.
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High-priority research in this area would address • identification of the highest-priority needs for resources and sup port for family caregivers, particularly assessment of how caregiv ers' needs vary across race and ethnicity, and community; • means of identifying the assets that family caregivers bring to this role, as well as their needs for supplemental skills and training and other resources to enhance their capacity to provide care while maintaining the safety and well-being of both care recipients and caregivers; • continued development and evaluation of interventions to support and enhance family caregiving and address the practical and logis tical challenges; and • continued progress in data collection and research methods. HOW COMMUNITY CHARACTERISTICS AFFECT DEMENTIA RISK AND QUALITY OF LIFE FOR PEOPLE LIVING WITH DEMENTIA AND THEIR FAMILIES There is strong evidence that community factors shape the exposures and behaviors that influence dementia risk, the way people interpret the meaning of the experience of living with the disease, their expectations for social interactions, and the availability of needed resources.
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THE HEALTH CARE SYSTEM AND THE INSTITUTIONS THAT PROVIDE RESIDENTIAL LONG-TERM CARE AND HOSPICE AND PALLIATIVE CARE People living with dementia interact with many different institutions that provide health care and social support as their dementia symptoms become more severe and they lose their ability to function independently. Many spend time living in long-term care facilities and ultimately receive such care as hospice resources at the end of life.
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SUMMARY 7 – documentation of the diagnosis and care management received by persons living with dementia, – clarification of disease trajectories, – identification of effective methods for providing compre hensive dementia-related services, – development and evaluation of standardized systems of coordinated care for comprehensively managing multiple comorbidities for persons with dementia, and – identification of effective approaches for integrating care services across health care delivery and community-based organizations; • how to strengthen the quality and structure of long-term and end of-life care provided to people living with dementia, including – identification of future long-term and end-of-life needs and available care, – description and monitoring of factors that contribute to problems with nursing home quality, – development and evaluation of alternatives to traditional nursing home facilities including home care options and innovative facility designs, and – improved understanding of how and when persons living with dementia use palliative and hospice care options and of variations in the end-of-life care available across regions and populations; and • how to strengthen the arrangements through which most dementia care is funded (traditional Medicare, Medicare Advantage, alterna tive payment models, Medicaid) , including – comparison of the effects of different financing structures on the quality of care and clinical outcomes, – examination of ways to modify incentives in reimburse ment models to optimize care and reduce unnecessary hos pitalizations and other negative outcomes, and – development and testing of approaches to integrated financing of medical and social services.
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THE ECONOMIC COSTS OF DEMENTIA TO INDIVIDUALS AND SOCIETY Understanding the full extent of the economic impacts of dementia and how they can be reduced will be key to mitigating the overall impact of the disease on individuals and society. Both reducing unnecessary costs and increasing value -- that is, achieving significant improvements in health, quality of life, and other outcomes that justify the associated costs -- will bring economic benefit.
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TEN-YEAR RESEARCH PRIORITIES Collectively, the priority research outlined above constitutes a substantial body of work that will provide the basis for powerful benefits to people living with dementia, their families and communities, and society. Recognizing that resources are finite, however, the committee identified the highest priorities from that set of research challenges to help ensure that the research undertaken in the next 10 years will contribute more than the sum of its parts.
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In addition to these broad priorities, the committee offers guidelines for the design of an effective portfolio of research. CONCLUSION 9-2: A 10-year research agenda will be optimally effec tive if it • is coordinated to ensure that the various research topics identified in this report are addressed sufficiently without redundancy and competing initiatives; • consistently takes into account fundamental socioeconomic factors that influence who develops dementia, access to high-quality care, and outcomes; • includes pragmatic, implementation, and dissemination research needed to ensure that findings can be implemented effectively in clinical and community settings; and • addresses potential policy implications that are articulated begin ning in the planning stages and assessed during the course of the investigations.
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The report lays out a broad research roadmap for the behavioral and social sciences over the next decade. It notes promising intervention programs that require additional confirmatory evidence.
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