Family Caregiving in the New Normal

1st Edition - May 8, 2015
Editors: Joseph E. Gaugler, Robert L. Kane
Language: English
Paperback ISBN:
9 7 8 - 0 - 1 2 - 4 1 7 0 4 6 - 9
eBook ISBN:
9 7 8 - 0 - 1 2 - 4 1 7 1 2 9 - 9

Family Caregiving in the New Normal discusses how the drastic economic changes that have occurred over the past few years have precipitated a new conversation on how family ca… Read more

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Family Caregiving in the New Normal discusses how the drastic economic changes that have occurred over the past few years have precipitated a new conversation on how family care for older adults will evolve in the future.

This text summarizes the challenges and potential solutions scientists, policy makers, and clinical providers must address as they grapple with these changes, with a primary focus given to the elements that may impact how family caregiving is organized and addressed in subsequent decades, including sociodemographic trends like divorce, increased participation of women in the workforce, geographic mobility, fewer children in post-baby boom families, chronic illness trends, economic stressors, and the current policy environment.

A section on the support of caregivers includes technology-based solutions that examine existing models, personal health records, and mobile applications, big data issues, decision-making support, person-centered approaches, crowd-sourced caregiving such as blogs and personal websites that have galvanized caregivers, and new methods to combine paid and unpaid forms of care.

List of Contributors
Foreword
Chapter 1. Introduction: Family Caregiving in the New Normal
- The Personal Dimension: Robert L. Kane, MD
- The Personal Dimension: Joseph E. Gaugler, PhD
- What Does Caregiving in the United States Look Like?
- Overview of Family Caregiving in the New Normal
- Conclusion
- References
Section I: Personal Perspectives: Caregiving in the New Normal
- Chapter 2. Caregiving Roles Reversed: Becoming My Mother’s Mother
- Chapter 3. Complexity and Opportunities in Caregiving: A Story of Holding On and Letting Go
- Chapter 4. Caregiver Woes in the Medicare System: A Tale of Two Patients
  - My Mother’s Stroke and the CPAP Saga
  - Mr. Bernard and Power Mobility
  - References
- Chapter 5. The Caregiving Crucible: Crisis and Opportunity
  - Introduction
  - Career Choices—Costs and Opportunities
  - Family Choices: Costs and Opportunities
  - References
Section II: Threats to Family Caregiving in the United States
- Chapter 6. Factors Affecting the Future of Family Caregiving in the United States
  - Demand for Family Caregivers
  - Supply of Family Caregiving
  - Conclusion
  - References
  - Further Reading
- Chapter 7. Chronic Illness Trends and the Challenges to Family Caregivers: Organizational and Health System Barriers
  - The Broader Context of Demographic, Chronic Illness, and Disability Trends
  - The Family Caregiver Workforce: Size, Composition, and Scope of the Job
  - Challenges
  - Complex Care Management Demands (Challenging Medication Schedules, Decisions, and Costs) Related to Chronic Illness
  - Activities That Pertain to Coordinating Care
  - Expanded Emphasis on “Patient-Centered” Care in the Absence of a Guiding Framework
  - Scarcity of Health Professionals with Geriatric Expertise
  - Future Trends
  - References
  - Further Reading
- Chapter 8. Informal Care and Economic Stressors
  - Introduction
  - Conclusion
  - References
Section III: Policy Considerations and Family Caregiving
- Chapter 9. The Policy and Political Environment of Family Caregiving: A Glass Half Full
  - Introduction
  - Family Caregiver Policy 1990–2013: Wins and Losses
  - Policy-Maker Concerns That Impede Progress
  - What Could Help to Fill the Glass in the Future
  - References
  - Further Reading
- Chapter 10. Help for Family Caregivers Available from Government Programs and Policies
  - Direct Support for Family Caregivers
  - Conclusion
  - References
  - Further Reading
Section IV: A New Vision for Supporting Caregivers in the Future
- Chapter 11. Translational Research on Caregiving: Missing Links in the Translation Process
  - Translational Research Defined
  - The Need for Translational Research on Caregiving
  - Are Social and Behavioral Caregiver Intervention Programs Ready for Translation to Communities?
  - Characteristics of More-Promising Caregiving Interventions
  - Translating Caregiver Intervention Programs
  - Barriers to Dissemination and Implementation
  - The RCT Conundrum
  - Overcoming the Barriers: The Missing Link
  - Pragmatic or Practical Clinical Trials
  - Community-Based Participatory Research
  - Adaptive Approaches
  - Formative, Mixed-Method Approaches
  - Conclusions
  - References
- Chapter 12. Information Technology to Support Aging: Implications for Caregiving
  - Introduction
  - Telehealth in the Home
  - Smart Homes
  - Personal Health Records
  - Big Data
  - Robotic Applications
  - Conclusion
  - References
- Chapter 13. Supporting Caregivers of Older Adults in Making Decisions: Current Tools and Future Directions
  - Introduction
  - Literature Review
  - Types of Decisions Caregivers Make and Associated Tools
  - Summary
  - References
- Chapter 14. Person-Centered Approaches to Caregiving
  - Effects on Caregivers
  - Institutional Effects
  - Links to Care Management
  - Challenges to Patient-Centered Care
  - Family-Centered Care
  - Provider Role
  - Caregiver Experience
  - Role of Technology
  - Information Organization to Support Person-Centered Care
  - The Changing Healthcare Environment
  - References
  - Further Reading
- Chapter 15. The Impact of the Internet and Social Media on Caregiving
  - The Growth of Social Media and Social Networking
  - The Impact of the Internet on Healthcare Decisions
  - Improving Caregiving Through Social Media
  - Quality Control and Ratings of Services in Social Media
  - What Does the Future Hold for Caregivers and families?
  - Conclusion
  - References
  - Further Reading
- Chapter 16. The Escalating Complexity of Family Caregiving: Meeting the Challenge
  - The Reality of Today’s Family Care
  - Long-Term Care and the Future Care Gap
  - Family Caregivers Provide Complex Medical/Nursing Tasks with Little Training or Support from Professionals
  - More Workers Have Elder care Responsibilities
  - Meeting the Challenge
  - References
- Chapter 17. Caregivers as Therapeutic Agents in Dementia Care: The Context of Caregiving and the Evidence Base for Interventions
  - Introduction
  - Context of Dementia Caregiving
  - Framework for Understanding Dementia Caregiving and Intervention Targets
  - Historical Evolution of Caregiver Intervention Studies
  - State of the Science of Caregiver Intervention Studies
  - Glass Half Full
  - Glass Half Empty
  - Future Directions for Caregiver Intervention Research
  - Conclusions
  - Acknowledgments
  - References
  - Further Reading
Conclusion
- Chapter 18. A Perfect Storm? The Future of Family Caregiving
  - Challenging Trends for Family Caregiving
  - Navigating the Storm
  - Final Thoughts
  - References
Index

Joseph E. Gaugler

Joseph E. Gaugler, PhD is a Professor in the School of Nursing and Center on Aging at The University of Minnesota.". Dr. Gaugler's research examines the sources and effectiveness of long-term care for chronically disabled older adults. A developmental psychologist with an interdisciplinary research focus, Dr. Gaugler's interests include Alzheimer's disease and long-term care, the longitudinal ramifications of family care for disabled adults, and the effectiveness of community-based and psychosocial services for chronically ill adults and their caregiving families. Underpinning these substantive areas, Dr. Gaugler also has interests in longitudinal and mixed methods.

Dr. Gaugler currently serves as Editor-in-Chief for the Journal of Applied Gerontology and on the editorial boards of Journals of Gerontology: Psychological Sciences, Journals of Gerontology: Social Sciences, and Psychology and Aging. He was awarded the 2003 Springer Early Career Achievement Award in Adult Development and Aging Research, the 2011 M. Powell Lawton Distinguished Contribution Award for Applied Gerontology from the American Psychological Association (Division 20: Adult Development and Aging), the 2011 Dean's Award from the University of Minnesota School of Nursing, and the 2015 Gordon Streib Distinguished Academic Gerontologist Award from the Southern Gerontological Society. He is a Fellow of the Gerontological Society of America and the American Psychological Association.

Affiliations and expertise

Professor, School of Nursing and Center on Aging, University of Minnesota, Minneapolis, MN, USA

Robert L. Kane

Robert L. Kane, MD, holds an endowed chair in Long-term Care and Aging at the University of Minnesota School of Public Health, where he was formerly the Dean. He directs the University of Minnesota's Center on Aging, the Minnesota Area Geriatric Education Center, the Clinical Outcomes Research Center, and an AHRQ-funded Evidence-based Practice Center. He has conducted numerous research studies on both the clinical care and the organization of care for older persons, especially those needing long-term care. He is the author or editor of 34 books and more than 500 journal articles and book chapters on geriatrics and health services research. He has analyzed long-term systems both in this country and abroad. Recent books include The Heart of Long-term Care, Assessing Older Persons, the 7th edition of Essentials of Clinical Geriatrics, Conducting Health Care Outcomes Research, and Meeting the Challenge of Chronic Illness. He and his sister, Joan West, have written an account of the struggles to get adequate long-term care for their mother, It Shouldn’t Be This Way. That experience led to his founding a national organization dedicated to improving long-term care, Professionals with Personal Experience with Chronic Care (PPECC), which has over 800 members. He recently wrote a book specifically to help caregivers of older persons, The Good Caregiver. He is a graduate of Harvard Medical School.

His current research addresses both acute and long-term care for older persons, with special attention to the role of managed care, chronic disease, and disability, as well as systematic reviews of the literature on various topics. Dr. Kane has consulted to a number of national and international agencies, including the World Health Organization's Expert Committee on Aging. He has received the President’s Award from the American Society on Aging and the Polisher Award from the Gerontological Society of America, the Enrico Greppi Prize from the Italian Society of Gerontology and Geriatrics, and the British Geriatrics Society Medal for the Relief of Suffering amongst the Aged. He was elected to the University of Minnesota’s Academic Health Center’s Academy for Excellence in Health Research.

Affiliations and expertise

University of Minnesota, Minneapolis, MN, USA

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