An estimated 44 million people provide full-time or part-time care for the elderly, disabled veterans, new mothers, the injured, the sick, etc. — a problem that eventually impacts everyone in the nation.
Caregivers have few tools, few support systems and receive minimal, if any, training for these responsibilities. What innovations can we develop specifically to support the caregiver community?
Meet the Challenge Team
The Challenge Team Members are leaders in their fields and reflect multi-disciplinary, passionate and thoughtful perspectives for the Challenge they represent.
Challenge Team members participate in the discussion held by the Great Challenges community, and will be creating responses to questions submitted by the community on the discussion tab.
Dr. Peter Arno, a health economist, is the director of the doctoral program in Health Policy and Management and director of the Center for Long Term Care Research & Policy at the School of Health Sciences and Practice at New York Medical College (NYMC). Before coming to NYMC, he was the director of the Division of Public Health and Policy Research in the Department of Epidemiology and Population Health at Albert Einstein College of Medicine and Montefiore Medical Center, and has had a distinguished career in health policy and health services research. He was a Pew Postdoctoral Research Fellow at the Institute for Health Policy Studies and the Institute for Health and Aging at the University of California, San Francisco, a scholar of the American Foundation for AIDS Research, and a recipient of the Investigator Award in Health Policy from the Robert Wood Johnson Foundation. His book, Against the Odds: The Story of AIDS Drug Development, Politics & Profits (New York: HarperCollins), was nominated for a Pulitzer Prize.
Dr. Arno’s recent work includes studies on the economics of informal caregiving and long-term care, social and geographic determinants of obesity, public health and legal implications of regulating tobacco as a drug, cost, access, quality and outcome measures related to HIV disease and substance abuse, regulation and pricing practices of the pharmaceutical industry, regional health planning and, the impact on health disparities of income support policies such as Social Security and the Earned Income Tax Credit.
Dr. Arno has testified before numerous U.S. House and Senate committees on topics related to his research.
As a health economist my goal has been to portray the magnitude of the caregiving burden in the United States through economic terms to bring much needed attention to this neglected corner of our healthcare system. I have also come to appreciate the inter-connected roles of both the formal and informal sectors that provide caregiving and together form the foundation of long term care in this country. At our Center for Long Term Care Research & Policy at New York Medical College we are engaged in research, education and public policy designed to address health care disparities, health care needs and caregiving across the lifespan and to promote fair and equitable financing of long term care in the United States.
Alan Blaustein’s passion for healthcare solutions began with his thymic cancer diagnosis in 2005. Frustrated with the limited resources available to effectively navigate the healthcare system, he leaned on his longtime friend Dr. Nancy Snyderman, NBC's Chief Medical Editor, for support. After Alan's recovery, the friends realized there was a need for a service to help patients and caregivers make better decisions amid the healthcare system’s many complexities. In June 2012, they launched CarePlanners.
Alan has been involved with entrepreneurial ventures since the mid-1990s. As an attorney, he led the initial public offerings for more than 15 internet company clients. In addition to these roles, Alan served as President, Worldwide Corporate Development & Strategy for About.com, and served as CEO of Flexplay Technologies. Alan has also developed internet strategies for a myriad of companies, including F+W Magazine, Ford Models, and the Cancer Support Community. Most recently, he co-founded e-commerce company OpenSky in 2009.
Alan spends as much time as he can on charitable activities. He founded the annual Stinky Ball (his son's name for the thymic cancer) to benefit the Foundation for Thymic Cancer Research, raising nearly $1 million since 2006. Most importantly, he is the father of three wonderful kids for whom he wants to set a lasting example of the right way to do things.
Alan Blaustein is a semi-professional patient whose journey through the inefficiencies of the healthcare system began with his 2005 thymic cancer diagnosis. Along the way he has learned the many healthcare system challenges the hard way, namely the lack of communication and coordination that permeate the system and leave the patient feeling completely lost in the process.
To work, our system has to put the patient into the middle of his own care, rather than as an afterthought in a tangled bureaucracy. Together with his friend and business partner, Dr. Nancy Snyderman, Alan has started CarePlanners to help people to make better healthcare decisions for themselves and their loved ones in the face of our complex healthcare system. It simply has to be simpler.
Suzanne Mintz is an honored social entrepreneur. In 1993 she co-founded the National Family Caregivers Association (NFCA) and over the years built it into the nation's premier organization in support of all family caregivers, regardless of their loved one’s age or diagnosis. Mintz is known as a forward-thinking leader who transformed the way the nation views family caregivers and family caregiving.
At a time when the focus of the caregiving community was solely on the provision of community services for the elderly, she promoted the idea that chronic illness and disability have serious consequences for caregivers and care recipients alike. In addition its impact goes beyond individual families and has become a national healthcare and social policy issue. She realized that family caregivers are part of a "silent and neglected workforce" that does not receive the recognition, training, support, assistance, or public policy attention it deserves.
Over the years she has inspired hundreds of thousands of family caregivers by sharing her own story and the lessons she has learned over the years. Both an author and speaker Mintz has empowered family caregivers to become advocates for themselves and their loved ones in order to improve their daily lives as well as their futures.
My expertise in the field of caregiving comes from both personal experience and as the co-founder and now CEO Emeritus of the National Family Caregivers Association.
Since NFCA’s founding in 1993 I have spoken with thousands of family caregivers, participated in high level policy discussions at the national level, spoken with numerous providers, health plans, and insurers all of which have deepened my understanding of the complex issues involved in resolving the Caregiving Crisis.
My 38 years of caregiving for my husband with MS provides me with a “walk in your shoes” perspective that is behind virtually all of my insights and ideas.
Barry J. Jacobs, Psy.D. is a clinical psychologist, family therapist and the author of the book, The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (Guilford, 2006). As a clinician, he specializes in helping families cope with serious and chronic medical illnesses. As an educator, he works as the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA and has had adjunct faculty positions with the Temple University School of Medicine, University of Pennsylvania School of Nursing and the Institute for Clinical Psychology of Widener University. He is the national spokesperson on family caregiving for the American Heart Association and a member of the AARP Caregivers Advisory Panel. He was a member of the American Psychological Association Presidential Task Force on Caregiving that produced the Caregiver Briefcase website.
A former journalist, he writes an advice column for Take Care!, the newsletter of the National Family Caregivers Association and was the long-time editor of the In Sickness & Health column for the APA journal Families, Systems & Health. He is on the board of directors of the Collaborative Family Healthcare Association, a national organization dedicated to the integration of physical and mental healthcare, and co-edits its Growing MedFT blog. He is also an honorary board member of the Well Spouse Association.
Dr. Jacobs received his bachelor’s degree from Brown University and his doctorate in clinical psychology from Hahnemann/Widener Universities. He lives with his wife and two children in Swarthmore, PA. He maintains a website, www.emotionalsurvivalguide.com.
In my clinical work over the past two decades with families dealing with complex progressive illnesses, such as dementia, MS and Parkinson’s disease, and sudden medical events, such as heart attacks, traumatic brain injuries and stroke, I’ve learned that a given family’s beliefs and affective bonds determine their capacity for coping with caregiving as much or more than the severity of their loved one’s medical condition and the family’s material resources. I help family members identify and draw on their senses of cohesion and mission while helping them negotiate internal differences in perspectives and priorities.
Cheri Lattimer is the CEO and President of Consulting Management Innovators (CMI), providing outsourcing and advisory services to the care management and healthcare industries. She serves as the Executive Director for the Case Management Society of America, Executive Director for the National Transitions of Care Coalition and the Director of the Case Management Foundation. Her leadership in quality improvement, case management, care coordination and transitions of care is known on the national and international landscape.
Carol Levine directs the United Hospital Fund’s Families and Health Care Project, which focuses on developing partnerships between health care professionals and family caregivers, especially during transitions in health care settings (www.nextstepincare.org). She was editor of the Hastings Center Report and is now a Hastings Center Fellow.
In 1993 she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics. She was named a WebMD Health Hero in 2007 and a Civic Ventures Purpose Prize Fellow in 2009.
She edited Always On Call: When Illness Turns Families into Caregivers (2nd ed., Vanderbilt University Press, 2004), and with Thomas H. Murray, co-edited The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals and Policy Maker (Johns Hopkins University Press, 2004). Her next book, Living in the Land of Limbo: Fiction and Poetry about Caregiving, will be published in 2013 by Vanderbilt University Press.
I was my late husband’s caregiver for 17 years after he was severely injured in an automobile accident. My experience caring for him at home, combined with my 30 years’ experience in health policy and medical ethics, are the background for my current position as director of the United Hospital Fund’s Families and Health Care Project. My focus is on helping family caregivers navigate the health care system, especially during times of transition, and helping healthcare professionals understand family caregivers’ needs for training and support.
Challenge Team Perspectives
We selected 10 questions out of the many submitted by our Great Challenges Community, to be addressed by each of our Team members.
See their responses and perspectives, below.
Question 1What are the top 10 contributing factors for the Great Challenge, "The Caregiver Crisis"?
Select a Question to View The Challenge Team's Responses
The following questions were submitted by the TEDMED Community and selected for further discussion. The Team Members have weighed in on each, select below to see their responses: