This interview with Gail Hunt is the first in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it.

Gail Hunt is president and CEO of the National Alliance for Caregiving, a nonprofit coalition dedicated to conducting research and developing national programs for family caregivers and the professionals who serve them. She is also on the Board of Commissioners for the Center for Aging Service Technology, the steering committee for Long-Term Care Quality Assurance, and the Governing Board of the Patient-Centered Outcomes Research Institute (PCORI). She is a member of CFAH’s Board of Trustees.

The Growing Complexity and Prevalence of Caregiving

Gruman: People frequently tell me how they find themselves taking on new responsibilities for their health care –  or that of a loved one –  that are both unexpected and unfamiliar.  Have you seen any trends in caregiving or in caregivers’ reports of their activities that shed light on these stories? 

Are more people providing care to family members or friends today than a decade ago?

Gail Hunt:  The number of family caregivers has gone from 21 percent of the US population serving in that role in 2004 to 23 percent in 2009.  This increase reflects a combination of increased longevity and the aging of the Baby Boomers. We’ve always, as a country, taken care of family members.  There are just more of us who now need care.

Gruman:  What additional forces are driving the increase in the number of caregivers and the number of hours devoted to family caregiving in the US?

Gail Hunt:  Public policy is pushing back onto the family more of the care for people who have serious illnesses and disabilities.  States are financially strapped and are looking to trim all expenditures.  Of course, Medicaid is in the spotlight.  As states squeeze down Medicaid rolls, family caregivers pick up the care for people who formerly received professional services, including skilled nursing care, day care, home health and transportation.

It is not always so straightforward:  Say that your mom is ready to move into a nursing home. Increased eligibility requirements and longer waiting lists mean that she is not able to do so for many months, if not years.  You as a family caregiver will shoulder the responsibility for caring for her in the meantime.

Gruman: Have you seen changes over time in the expectations of caregivers by health professionals in terms of the type of care they deliver?

Gail Hunt:  People are being sent home from the hospital, rehab facilities and nursing homes still needing a lot of technical care. Susan Reinhard, Senior Vice President for Public Policy at AARP says, “Family caregivers are being asked to do things that make a young nurse quake in her boots.”

Services to support family caregivers have been cut as well.  In California, for example, funding for state-supported services like respite care and the network of eleven caregiving resources centers has been cut drastically.  So they have a situation where people are being pushed back into their homes but the family caregivers are not being given what they need to care for them well.

Federal funds for caregiving – while modest – have not yet been cut. The National Family Caregivers Support Program is only $162 million, but those resources are still intact.

Gruman:  How have advances in medical technology changed the job of family caregiving?

Gail Hunt:  A lot of people are now sent home from the hospital or rehab facility with respirators and stomach tubes and other technologies where they would have been kept in the hospital before.  Sometimes there is training for the patient and the caregiver but often there is not.  Sometimes the training while the patient is in hospital paralyzes peoples’ ability to actually manage well.  They hear things like, “If you don’t do this right, your dad could die.”

Family caregivers have to quickly become quite sophisticated as the pressure for patients to be sent home quicker but sicker continues.  Getting the doctor and discharge planners to set appropriate expectations is important. If a parent has a stroke, for example, the hospital health professionals may set the expectation that after six months, the patient will go back to the way they were before.  Caregivers – and patients – need guidance about what kind of progress is reasonable so they can plan accordingly.

Gruman:  Have you seen any recognition by primary care providers, hospitals or health plans of the increased amount and technical burden of family caregiving? 

Gail Hunt:  Every hospital in the country is aware of the problem of readmissions. Hospitals are now asking themselves, “What can we do to ensure this person doesn’t come back?”  They are looking for simple things to do that will make a big difference.  One thing they are focusing on is medication management – as though this will be the panacea.  Most care transition models focus more on communication among professionals and overlook the critical role of educating and supporting the patient and family caregiver in recovering from a hospitalization – and in the process, preventing readmission.

There are a couple of well-tested, established models of care transition that recognize the importance of the family caregiver and really try to involve the family caregiver so the patient won’t cycle back.  The Transitional Care Model, developed by Mary Naylor, the Care Transitions Model developed by Eric Coleman and the Guided Care Model developed by Chad Boult all emphasize this. Aetna tested Mary Naylor’s model in a for-profit insurance setting and got very positive findings, a sign that it is feasible and worthwhile to focus on family caregiving. 

CMS has made a lot of money available to improve approaches to making safe care transitions. They are looking for good models that can be taken to scale.

Gruman: Clearly, our abilities (or lack thereof) to care for ourselves and our loved ones affects how well we recover and whether we continue to be able to live independently.  You said before that resources that might help with this are being cut.  What are efforts that are ongoing or starting up that support family caregivers in doing this better?

Gail Hunt: The VA has a new caregiver program that resulted from the Omnibus Caregivers and Veterans Act of 2010.  It established a good support program for caregivers of veterans injured post 9/11. That’s really important, but the vast majority of caregivers are caring for people injured in World War II, Korea and Vietnam and are not covered by the program.  Congress wanted to be responsive to Veterans of Iraq and Afghanistan.  I am a big supporter of the VA’s caregiving work in general: it’s a great program.  They have tried where they could to be supportive of caregivers of those wounded in earlier conflicts.

The best – and probably most convenient – sources of support for caregivers these days are online.  The well-regarded generic sites like Mayoclinic.org and WebMD and the disease-specific Websites like cancernet.com and the Michael J. Fox Foundation for Parkinson’s Research can provide family caregivers with a good sense of the disease or condition, how it progresses and what to watch out for.  But caregivers also need information about caregiving and there are good sites for that too.  Some of the disease sites like the Alzheimer’s Association and the National Multiple Sclerosis Society have excellent information about the disease and also a wealth of caregiving information and services like support groups and chat rooms.  There are also some excellent sites like caregiving.com and caring.com where the needs of the family caregiver are the sole focus.

The digital divide means that some people who need support that is mostly available online won’t get it – but then, the burden of family caregiving is such that most family caregivers are hard pressed to find time to even make use of this kind of support. I hope that as the digital divide eases, more people will be able to find the information and support they need.

Related Links:

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

• Trudy Lieberman,  journalist for more than 40 years and contributing editor of the Columbia Journalism Review
• Dale Shaller, Principal of Shaller Consulting Group
• Connie Davis, geriatric nurse practitioner and health care consultant
• Molly Mettler, Senior Vice President for Healthwise
• David Sobel, Medical Director of Patient Education and Health Promotion for The Permanente Medical Group
• Kate Lorig, Professor at the Stanford University School of Medicine and Director of the Stanford Patient Education Research Center
• Shoshanna Sofaer, Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College
• Judith Hibbard, Professor of Health Policy at University of Oregon & lead author of the Patient Activation Measure (PAM)
• Carol Alter, Director of Policy and Community Outreach and an Associate Professor in the Georgetown University Department of Psychiatry