On November 29, TEDMED, a multidisciplinary community of innovators and leaders dedicated to creating a better future in health and medicine, held a panel discussion via webcast titled The Caregiver Crisis. Members of the panel included upper-level management from the Center for Long Term Care Research & Policy, the National Family Caregivers Association, the Case Management Society of America, the Families and Health Care Project, and CarePlanners. This thought-provoking discussion raised many points:

  1. The health care system is not in a position to take care of everyone. In the United States, 44 million people are currently providing full- or part-time care to a loved one. As the population ages, this number is expected to grow. Additionally, in today’s world, people are busier and not always living in close proximity to their family members, so many aging people are left to care for themselves.
  2. Family caregivers can help us to provide more person-centered care. As providers, we only see a part of each person – the part that is related to his or her illness. The family caregiver sees the person as a whole, and also knows the patient’s history through time. As a result, caregivers can provide us with valuable information that can help to guide our care. We, as providers, need to recognize and respect the value that caregivers bring to the table and view them as part of the patient’s care team.
  3. One challenge may be that family members, though often loving and well-intentioned, are untrained, unpaid and sometimes ambivalent.  We must address these issues by making sure family members are engaged not only in goal-setting during admission, but also in discharge planning.
  4. Family caregivers need training and resources. When designing training programs for family caregivers, be cognizant of health literacy issues and speak in layman’s terms. Try to avoid words like “should” or “have to.” Make suggestions instead of giving orders. Develop a list of online tools to share with family caregivers that includes online forums that will allow them to communicate with other caregivers.
  5. One disconnect may be that for many families, home health aides are too expensive, but at the same time, caregivers are prepared to be only companions, not nurse aides.
  6. Employers need to allow family caregivers flexibility. Some employers are already offering flexible work hours or work-at-home options for family caregivers, but we’re not seeing this across the board. One reason may be that many employees are reluctant to ask for help, particularly during tough economic times. Another reason is that some jobs don’t allow for a lot of flexibility (e.g., hospital nurses can’t work from home). We need to come up with solutions that are tailored to the individual and to each industry. As the population ages, employers will likely be forced to find some way to deal with this situation, much as they were when more women entered the workforce and there became a need for maternity leave.
  7. Youth caregivers have special needs. There are far more children acting as family caregivers than we know. There is currently a program in Florida that works through the school system to help youth caregivers manage schoolwork, emotional issues, and physical needs related to caregiving. This type of assistance allows kids to be kids and to share their experiences so they don’t feel so different from others. We need many more such programs. In addition to the Florida model, there are also programs in Australia and Canada that could serve as models.
  8. We’ve come a long way toward improvement. The good news is that we've already come a long way toward meeting the needs of family caregivers, although what has been done so far is just baby steps in terms of what needs to happen in the future. The fact that family caregiving is even mentioned in the Affordable Healthcare Act is a step in the right direction. Over the next 10 years, it is likely that we’ll seen progress like we've never seen before.

Kindred’s leadership has been discussing these and related issues in other forums as well. Said Sean Muldoon, MD, MPH, FCCP, Senior Vice President and Chief Medical Officer for the Kindred Healthcare Hospital Division: “We have talked about caregivers taking increasingly greater roles in care in the last few days prior to discharge from post-acute care.”

Dr. Muldoon, who sits on many national expert panels, said some of those groups have even kicked around the idea of a mini-CNA (Certified Nursing Assistant) training for caregivers prior to a patient’s discharge from post-acute care. We would appreciate hearing your thoughts on this idea; please comment and let us know what you think about formal training for caregivers.