New AARP Report on Caregiving: Expert Sources Available

Two acclaimed experts are available to comment on it ~

Donna Thomson and Zachary White, Ph.D., are experts on family caregiving and co-authors of The Unexpected Journey of Caring:  The Transformation from Loved One to Caregiver

 
The 2019 update of the AARP “ Valuing the Invaluable” reveals the state of family caregiving in the U.S. today. Released on November 14, the report details the prevalence of family caregiving for a loved with an illness or disability, noted the changes since it’s last report in 2015, and reveals the challenges that we, as a society, must address.
 
For Donna Thomson and Zachary White, Ph.D., the report was a mix of good news, bad news, and some surprising news. They are the authors of THE UNEXPECTED JOURNEY OF CARING: THE TRANSFORMATION FROM LOVED ONE TO CAREGIVER (Rowman & Littlefield, Foreword by Judy Woodruff, Hardcover, June 2019) and two seasoned caregivers. Thomson is a long-time caregiver both for her son with severe cerebral palsy and for her elderly mother. In addition to having been a primary caregiver for his terminally ill mother, White is also an academic who studies caregiving.
 
Thomson and White are available to discuss the findings from the “Valuing the Invaluable.” Here is just some of what they have to say:
 
    • American families are dedicated, hard-working, and anything but selfish. With over 41 million family caregivers in the U.S. providing an estimated 34 billion hours of care valued at approximately $470 billion annually, we know that Americans families will step up when a member is in need. In a society that often feels alienating and atomizing, caregivers remind us that we know the value of connecting with and caring for others.      
  • Caregivers face steep out-of-pocket costs and it’s going to get worse. This can be financially devastating to families and it’s one reason why we must shift from thinking about caregiving as a personal experience to a social and political issue. Just as medical bankruptcy inspired the movement for healthcare reform, we must make the financial hardship of caregivers better known and demand our elected officials take action.
  • It’s going to get worse and we are not prepared for the coming shifts. Rising demand and shrinking families will increasingly strain family caregivers and those they care for. In 2010, there were 7.1 potential family caregivers for every person age 80+. By 2030, there may be only 4.1 potential caregivers for every person 80+. While there are public programs to help caregivers they are not nearly robust enough to accommodate the coming demands. With the shifting political winds in the US, including the widespread support for populist candidates and movements, the time is now to build a grassroots movements for caregiver support. The research also shows that 1 in 4 millenials are providing caregiving duties. This is a generation demanding change and—just at they are calling for student debt relief to make their futures more secure—they must begin to advocate for support for themselves as caregivers.
  • America’s caregivers are also its quiet innovators. The profiles of caregivers included in the report make clear how innovative and creative they are in solving problems and meeting daily challenges. Many of them cobble together their own customized systems made up of multi-sector public and private resources and find help within their communities and families. It’s time to stop thinking of caregivers as saints, and start recognizing them for a group of highly resourceful and creative people who are motivated by their love for others.
  • Nurse, housecleaner, therapist, bookkeeper, chauffeur: The report details just how many “professional” tasks caregivers manage. In a single day an average caregiver may administer a feeding tube, clean a bathroom, apply for an aid program, and drive a loved one to a doctor’s appointment. This labor is done for free and 60 percent of all caregivers also hold down a job. Caregivers know that their unofficial job involves juggling many roles, but it’s time that this reality becomes better understood by the general public, government, and—especially—by medical professionals, who frequently overlook the full spectrum of demands on caregivers.
Donna Thomson is the author of  The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving. She is a consultant and speaker on issues relating to family caregiving, disability and aging. Donna is a patient and family advisor on health research and policy and she teaches family caregivers in Canada how to advocate for care in hospital and in the community. She blogs regularly at The Caregivers Living Room (www.donnathomson.com).
 
Zachary White, PhD, is an award winning university professor who teaches undergraduate and graduate courses addressing topics such as provider-patient communication, caregiver communication, the patient experience, health and illness narratives, digital health literacy, social support and disclosure, and sense making amidst life transitions. As the founder of the caregiver blog and resource “The Unprepared  Caregiver” (www.unpreparedcaregiver.com), his original writing voice mixes first-hand experiences, communication expertise, and cultural analysis featuring a care-centered point of view.
 
PRAISE
“Caregivers often sacrifice their own health and relationships to take care of loved ones, which is a big problem in the United States, where nearly 45 million Americans provide unpaid care to an adult or child with medical problems or chronic conditions. The authors, caregiving bloggers, recommend online forums and Facebook groups as wonderful sources of support at 3 a.m., and note that libraries offer book groups, talks, and film screenings. They authors share their own stories: one quit her job and left her husband and daughter to move in with her mom, who had early-onset Alzheimer’s. Another found her son’s care needs increase after his severe cerebral palsy caused his right hip to dislocate. This guide is best when it provides statistics (10,000 Americans turn 65 every day, and 70 percent of them will need long-term care for an average of three years) and advice (what tasks could someone else do?). PBS NewsHour anchor Judy Woodruff, whose older son needs help with “almost all activities of daily living,” provides a foreword recognizing the nation’s “silent army” of caregivers.”— Booklist

“… The book authentically prepares caregivers for the quest of normalcy and life balance while addressing a myriad of challenges …  Directions for building community sharing provide meaning, hope, and promise to successfully navigate the often invisible lives of caregivers.”— Choice

 

“ … (G)entle guidance to help readers who are becoming caregivers … The authors write honestly about the feelings of loss during this transition, including grief over a future that will not happen. They explore the feeling of disorientation during the initial months of caregiving while recognizing how the caregiver’s relationships with one’s own family and friends can be affected, manifesting commonly in intolerance or disappointment … Any caregiver will find an abundance of assistance here.”— Publishers Weekly

“Nobody grows up planning to be a caregiver, but many of us will become one and sometimes when we least expect it. Donna Thomson and Zachary White bring powerful insights to help us understand what it means to be a caregiver and how to truly support those of us who will travel this unexpected journey.”— Samir K. Sinha, Director of Geriatrics, Sinai Health System and University Health Network, Toronto and Health Policy Research Director, National Institute on Ageing Canada

“One is never prepared to be a caregiver for a terminally ill spouse. The physical and emotional consequences of the role are devastating. Thomson and White expertly describe the effects of being a caregiver, including effects one might not be aware of, and the transformation that takes place in our lives because of our caregiving role.”— Pamela D. Larsen, PhD, RN, University of Wyoming, editor of Lubkins Chronic Illness: Impact and Intervention, 10th Edition

“… In  The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver, Donna Thomson and Zachary White remind us that living as a caregiver is a state of both being and becoming. This book made me think about the importance of providing opportunities for parents of children with disability to share their experiences with caregiving, and to understand what it means for them to be a caregiver…”— Jan Willem Gorter, Director of CanChild Research Center, McMaster University

“ … They describe the inexorable transformation into ‘caregiver’ in a story EVERYONE should read. This book details the psyche of caregiving—how it can change you forever; as well as the physical and daily duties of such ‘work’ in easily understood terms. Best of all, it gives caregivers ideas on navigating the inevitable roadblocks and surviving this under-recognized segment of American society – 45 million family caregiving heroes!”— Lawrence Bocchiere, President Emeritus/COB, The Well Spouse® Association

“Everyone who spends months and years caring for someone who isn’t getting better will find that Donna Thomson and Zachary White have given voice to their inner feelings and thoughts. They will find comfort and counsel in the authors’ wise observations.” — Rajiv Mehta, Founder and CEO of Atlas Caregiving

“… In this most refreshing and authentic book, no road maps are prescribed. Instead a compass is offered, lovingly brought together from Donna Thomson’s lived experience as a mother, carer and advocate and Zachary White’s experience as an authentic and reflective civic practitioner. Every page is embossed with hard won nuggets of wisdom from each of their domains and the interface between their experiences. If you are searching for genuine companions on the journey towards the Good Life, look no further.” —Cormac Russell, Faculty ABCD Institute, Director of Asset-based Community Development in Europe


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