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E-grāmata: Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences

  • Formāts: 360 pages
  • Izdošanas datums: 29-Sep-2021
  • Izdevniecība: National Academies Press
  • Valoda: eng
  • ISBN-13: 9780309498012
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  • Formāts: 360 pages
  • Izdošanas datums: 29-Sep-2021
  • Izdevniecība: National Academies Press
  • Valoda: eng
  • ISBN-13: 9780309498012

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As the largest generation in U.S. history - the population born in the two decades immediately following World War II - enters the age of risk for cognitive impairment, growing numbers of people will experience dementia (including Alzheimer's disease and related dementias). By one estimate, nearly 14 million people in the United States will be living with dementia by 2060. 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. From a societal perspective, these diseases place substantial demands on communities and on the institutions and government entities that support people living with dementia and their families, including the health care system, the providers of direct care, and others.



Nevertheless, research in the social and behavioral sciences points to possibilities for preventing or slowing the development of dementia and for substantially reducing its social and economic impacts. At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America's diverse population. Reducing the Impact of Dementia in America calls for research that addresses the causes and solutions for disparities in both developing dementia and receiving adequate treatment and support. It calls for research that sets goals meaningful not just for scientists but for people living with dementia and those who support them as well.



By 2030, an estimated 8.5 million Americans will have Alzheimer's disease and many more will have other forms of dementia. Through identifying priorities social and behavioral science research and recommending ways in which they can be pursued in a coordinated fashion, Reducing the Impact of Dementia in America will help produce research that improves the lives of all those affected by dementia.

Table of Contents



Front Matter Summary 1 Introduction 2 Prevention and Protective Factors 3 Improving Outcomes for Individuals Living with Dementia 4 Caregivers: Diversity in Demographics, Capacities, and Needs 5 The Role of the Community 6 Health Care, Long-Term Care, and End-of-Life Care 7 Economic Costs of Dementia 8 Strengthening Data Collection and Research Methodology 9 Ten-Year Research Priorities Appendix A: Biographical Sketches of Committee and Advisory Panel Members Appendix B: The Paid Health Care Workforce Appendix C: Synthesis of Reviews of Nonpharmacologic Interventions Appendix D: Complete Research Agenda
Summary 1(12)
1 Introduction
13(26)
About This Study
16(1)
Study Charge
17(1)
Purpose of a Decadal Survey
18(1)
Applying the Social and Behavioral Sciences to the Study of Dementia
19(2)
Context for Research on the Impacts of Dementia
21(1)
A Large and Growing Problem
22(1)
Disparities in Rates of Dementia and in Care and Resources
22(2)
COVID-19 and Dementia
24(1)
Study Approach and Scope
25(1)
Study Scope
26(1)
Information Gathering
27(2)
Guiding Themes
29(2)
Report Structure
31(1)
References
31(8)
2 Prevention and Protective Factors
39(5)
Interpreting the Evidence
41(1)
Influences on Cognitive Health in Individuals
42(1)
Evidence About Risk and Protection for Cognitive Health
43(1)
2017 National Academies Report
44(29)
Lancet Commission Report
46(1)
Potentially Important Risk Factors That Have Received Less Attention
47(1)
Use of Emerging Evidence to Promote Public Health
48(2)
Socioeconomic Risk
50(3)
Socioeconomic Factors
53(1)
Education
54(1)
Occupation
55(1)
Financial Resources
56(1)
Racial/Ethnic Disparities in Dementia Risk
56(4)
Research Directions
60(5)
References
65(8)
3 Improving Outcomes for Individuals Living with Dementia
73(36)
Perspectives on Living with Dementia
74(1)
Problems in Obtaining an Accurate and Timely Dementia Diagnosis
74(1)
Problems in Obtaining Supports and Services
75(1)
Challenges in Communicating with Doctors and Other Health Care Professionals
76(1)
Fear and Loss
77(1)
Research on Key Aspects of Living with Dementia
77(1)
Diagnosing Dementia
78(1)
Challenges in Arriving at a Diagnosis
79(4)
Questions About Communicating a Dementia Diagnosis
83(1)
Promoting Autonomy and Protecting from Harm
83(2)
Financial Decisions and Potential for Abuse
85(3)
Sexual Behavior, Risk, and Dementia
88(1)
Resources for Assessing and Supporting Decisions
89(2)
Interventions to Alleviate the Impact of Dementia
91(1)
Goals for the Care of Persons Living with Dementia
92(3)
Approaches for Addressing Key Dementia Symptoms
95(3)
Research Directions
98(3)
References
101(8)
4 Caregivers: Diversity in Demographics, Capacities, and Needs
109(28)
Reliance on Family Caregivers
110(4)
Family Caregivers' Perspectives
114(2)
Research on Family Caregiving
116(1)
The Caregiving Experience
116(3)
Caregiver Capacity and Screening
119(2)
Supports for Family Caregivers
121(1)
Intervention Research
122(2)
Focus on Three Key Issues: Care Transitions, Use of Assistive Technology, and Approaches for Addressing Behavioral and Psychological Symptoms
124(1)
Care Transitions
124(2)
Use of Technology to Support Caregiving
126(2)
Approaches for Addressing Behavioral and Psychological Symptoms of Dementia
128(1)
Research Directions
129(3)
References
132(5)
5 The Role of the Community
137(34)
Disparities That Affect the Impact of Dementia
138(3)
Links Between Community Characteristics and Cognitive Health
141(3)
The Role of Race and Ethnicity
144(1)
Looking Through a Community Lens
145(2)
Opportunities to Support Communities
147(1)
Types of Resources
148(2)
A Patchwork of Resources and Supports
150(3)
Building Community Responsiveness and Resilience
153(1)
Housing for People Living with Dementia
154(1)
Dementia Friendly Communities
155(2)
Caregiver Support: Washington State
157(1)
Aging in Place Challenge Program: Canada
157(1)
The Village Movement: Beacon Hill, Boston, Massachusetts
158(1)
Research Directions
158(3)
References
161(10)
6 Health Care, Long-Term Care, and End-of-Life Care
171(38)
The Health Care System
172(1)
Quality of Primary Care
172(2)
Fragmentation of Care Delivery
174(1)
Comprehensive Dementia Care
174(1)
A Model of Comprehensive Care at the Population Level
175(3)
Knowledge Gaps
178(1)
Long-Term and End-of-Life Care
179(1)
Assisted Living and Memory Units
180(1)
Nursing Homes
180(2)
Alternatives to Nursing Homes
182(2)
Palliative and Hospice Care
184(1)
Paying for Care: Medicare and Medicaid
185(1)
Coverage
186(2)
The Federal Role in Innovation
188(1)
Managed Care
189(1)
How Managed Care Works
190(1)
Medicare Advantage and Dementia Care
190(4)
Research Directions
194(6)
References
200(9)
7 Economic Costs of Dementia
209(14)
Magnitude of Economic Costs
210(2)
Drivers of Costs
212(2)
The Economics of Innovation
214(1)
Applying Behavioral Economics
215(1)
A Word About the Costs of Aducanumab
216(2)
Research Directions
218(1)
References
219(4)
8 Strengthening Data Collection and Research Methodology
223(40)
Challenges of Quantitative Research on Dementia
224(1)
Four Opportunities for Improvements in Methodology
225(1)
Data Sources
226(1)
Developing New Data Sources and Adding Items to Existing Sources
227(2)
Linking Existing Data Sources in New Ways
229(3)
Improving Recruitment
232(1)
Measurement
233(1)
Measuring Exposures
234(1)
Identifying Valid Early Predictors of Cognitive Outcomes
235(2)
Study Design
237(1)
Broadening the Repertoire of Tools
237(2)
Creating Opportunities for Quasi-Experimental Discovery, Including Leveraging Instrumental Variables Analyses
239(1)
Enhancing Analyses of Randomized Controlled Trials
239(1)
Moving from Evidence to Implementation
240(2)
Conducting Pragmatic Clinical Trials Embedded in Health Systems
242(2)
Evaluating Complex, Dynamic Interventions
244(1)
Simulations, Microsimulations, Agent-Based Models, and Complex Systems Models
245(1)
Formalizing Study Design Approaches
245(2)
Evidence Integration
247(1)
Methods for Assessing Heterogeneity and Generalizing Results
248(1)
Tools for Systematically Combining Evidence
248(1)
Tools for Quantifying Impacts of Policies, Interventions, or Therapies
249(3)
Investment in Human Capital and Research Capacity
252(1)
Research Directions
253(3)
References
256(7)
9 Ten-Year Research Priorities
263(12)
Research Agenda
267(3)
Call to Action
270(5)
APPENDIXES
A Biographical Sketches of Committee and Advisory Panel Members
275(10)
B The Paid Health Care Workforce
285(8)
C Synthesis of Reviews of Nonpharmacologic Interventions
293(28)
D Complete Research Agenda
321