Last week, I wrote about an important new survey of family caregivers that shows nearly half are performing work that is often done by nurses, such as managing medications, caring for wounds, and operating medical equipment. The report, by AARP and United Hospital Fund, sheds important light on the often unrecognized role of these family caregivers. And it raises a critical question: What can be done to help them?
These caregivers acknowledge they are largely untrained, and many say they learned how to perform these difficult tasks on their own, or from a friend or neighbor. Few were taught by health professionals. Imagine if nurses in hospitals or nursing facilities were providing such care with informal training like this. It would be a major scandal. Regulators would shut down the facilities within hours.
Yet, 80 percent of the frail elderly are getting their care at home, and not in a residential care facility. Family caregivers are the backbone of the support system for the frail elderly and younger people with disabilities. Yet, to be blunt, they often don’t know what they are doing.
The result: Those receiving care may needlessly be in pain or discomfort. They are at greater risks of falls, infections, or even drug overdoses. They may require more frequent hospitalizations. They almost surely cost the health system more money. What to do?
Susan Reinhard, Carol Levine, and Sarah Samis, the authors of the AARP/United Hospital Fund study, make 10 recommendations. Many involve changing the culture of health care to acknowledge this role of family members. For instance, they suggest that doctors, nurses, and social workers take more responsibility for family caregivers who are doing this work. They also urge that hospitals, nursing homes, and home care agencies provide greater support for those clinicians and aides who interact with these families.
More than anything, these families need explicit hands-on formal training and practical support. Sadly, there are only a few such programs around the country. The Schmieding Center in Springdale, Arkansas is one. The Congregational Health Network in Memphis, a venture of the Methodist LeBonheur Health System and hundreds of local churches, is another.
Yet there are so many more opportunities.
Senior villages could be an entry point for these training programs, perhaps by partnering with local hospitals or nursing facilities. So could faith-based organizations.
Managed care companies could sponsor training programs. After all, if a well-trained family caregiver can help keep a loved one out of the hospital, the managed care company stands to profit.
Hospital discharge planning, which is often the broken link in the health care chain, needs to understand the role and the capacity of family caregivers. Discharge planners should be identifying needed skills training begining with a patient’s admission. And hospitals ought to provide the resources to provide that training. With hospitals now paying financial penalties for excessive readmissions, this is a low-cost way to avoid those events.
Transitional care programs need to address these caregiver skills as well. These programs do a great job working with patients and family caregivers. But few of them provide real hands-on training. They should.
Medicaid and private long-term care insurance policies should include caregiver training as a benefit. If this training can keep people out of nursing homes, it can be a cost-saver in the long run.
None of this is complicated. It is not that expensive. Yet it can immeasurably improve the quality of life of those receiving care and those family members who help them every day.
