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What Is The “New” Normal in Family Caregiving?

By: , Posted on: July 30, 2015

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Family caregiving is becoming a topic of national conversation, and it’s become a part our lives, our communities, and our cultures. Below is an interview with the editors Joseph E. Gaugler and Robert L. Kane, editors of a new book called Family Caregiving in the New Normal. They have expended their role as academic scholars to address this social reality with the scientific skill expected of two of the leading scholars in aging and caregiving, and have assembled an outstanding group of authors, who offer insights into each topic.

What prompted you to write this book?

In talking with the many family caregivers who have participated in our research studies or have engaged us in our various community outreach and education efforts, a driving question is often “what can I expect?”  This led us to reflect on the question of: What can we as a society expect when it comes to family caregiving?  What are the challenges and possible solutions?  These initial questions then evolved into Family Caregiving in the New Normal.

How can family caregiving be sustained in the future?

The fact that family caregiving is receiving increased attention, due in part to the advocacy and consciousness-raising done by many families themselves, has helped place some of the key issues on the table, so to speak.  There are likely a number of recent developments that can help to better sustain family caregivers as the principal source of long-term care in the U.S., such as emerging technologies and assistive devices for older persons in need; policy advances such as the Caregiver Advise, Record, and Enable (CARE) Act; the increased emphasis on translation and implementation of evidence-based family caregiving services and supports in community settings and organizations throughout the U.S.,; and the potential of social media to harness community-based, grassroots advocacy efforts. As key payers and funders begin to realize the key role that family caregiving plays in the management of chronic disease over time, and that effective engagement of families can potentially reduce costs related to chronic impairments in older persons, then family caregiving can be sustained effectively.  Clearly, such an objective will not occur without effective coordination and integration across families, researchers, policymakers, and payers.

The first section of this book offers views on family caregiving through a personal lens. Why did you choose to incorporate personal stories and how/why did you choose these particular narratives?

Each year since 2009 we have held a community education and engagement conference at the University of Minnesota called “Caring for a Person with Memory Loss”.  It is designed to provide hands-on tools and resources for families and direct care professionals who help individuals with memory loss. It was originally promoted via word of mouth in 2008, and 90 people showed up.  Since then, the conference has routinely had anywhere from 200-350 people attend. When I hear the countless stories and challenges, it makes me wonder whether the scholarly research I have conducted resonates with these families as effectively as it should, but I (Dr. Gaugler) can also say that taking these families’ and care professionals’ experiences to heart has greatly enhanced the research and scholarship that I do in family caregiving.  In some ways, we wanted to capture such epiphanies in the structure of Family Caregiving in the New Normal: that policy, clinical interventions, services, and science cannot function effectively if the voices of families are not made central to such efforts.  So, each chapter reflects on and addresses some of the issues raised by the four introductory chapters that provide more personal perspectives.

What do you hope that the book will accomplish for caregivers? For policymakers?

We hope the book demonstrates to family caregivers that their experiences, and learning from them, are critical as we attempt to address the various challenges we see to the status quo of family caregiving in the U.S.  For policymakers, we hope that Family Caregiving in the New Normal becomes a clarion call, not only to the rapidly converging sociodemographic, economic, health, and policy trends that will change how family caregiving is provided, but also some ideas that could serve as the basis for compelling local, state, and federal policies that can address the challenge.

What goals should we be making as a society to improve the care for family caregivers and why is this issue often overlooked in the U.S.?

Family caregiving is often overlooked, perhaps in part, because of the assumption that families are always “there” and always “should be there” to provide help to older persons in need. However, as we have discussed at length earlier in the book, this is a faulty assumption. We describe in Family Caregiving in the New Normal several possible solutions as to how we as a society could enhance family caregiving in the U.S.  One area is the embrace of technological solutions (both lo- and hi-tech) that can facilitate independence on the part of an older person as well as offer family caregivers additional support.  The incorporation of easy-to-use decision-making tools that can help families navigate the often disruptive health transitions that occur during the course of a relative’s chronic disease could also provide beneficial.  Harnessing the power of social media that create resources, tools, and data that are driven from the “bottom up” (as opposed to traditional top-down hierarchies in healthcare) may also force healthcare and other institutions to better acknowledge the needs of family caregivers.  We note that progressive healthcare systems such as the Mayo Clinic have already begun to adopt such strategies to optimize their healthcare.

What three things would you say to policymakers right now?

Perhaps Susan Reinhard and Lynn Friss Feinberg of the American Association of Retired Persons and contributors to Family Caregiving in the New Normal state it best in their chapter.  They recommend that: 1) Accrediting organizations such as the Joint Commission should prioritize family caregiver needs and address them to achieve quality of care and quality of life for patients; 2) Assessment tools, if they are to be integrated into service delivery models, should capture what family caregivers actually do (e.g., complex care tasks and management) rather than rely on traditional measures such as help with activities of daily living; and 3) Family caregivers are at the center of care coordination in chronic disease contexts, and new financing and delivery models such as patient-centered medical homes should better integrate families into these approaches. As we have discussed earlier, it is critical that the case for cost savings in instnaces when families are better integrated into chronic disease care models is made effectively, because doing so will enhance the sustainability, replication, and implementation of such initiatives.

Thank you for taking the time to answer our questions about this fantastic new project. Lastly, who would you say is the target audience of Family Caregiving in the New Normal?

The target audience is really anyone who works with or has an interest in family caregiving in the United States.  This would include clinical care providers, researchers, policymakers at all levels, healthcare systems, and employers who are interested in learning more about what the future holds for family caregiving and how we can address such challenges.

About the Authors:

joseph gaugler robert kane

Joseph E. Gaugler, PhD is a Professor in the School of Nursing and Center on Aging at The University of Minnesota. 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. Dr. Gaugler currently serves as Editor-in-Chief for the Journal of Applied Gerontology and on the editorial boards of several journals. He is a recipient of numerous awards and is a Fellow of the Gerontological Society of America and the American Psychological Association. Read full bio here.

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. Read full bio here.

About the Book:

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.

family caregiving in the new normal

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.

If you are interested in learning more, Family Caregiving in the New Normal is available on the Elsevier Store.  Apply discount code “STC215″ at checkout and save up to 30% off the list price.

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