Family members and friends are the bedrock of our system of personal care for frail older adults and younger people with disabilities. Without their support, the nation’s hospitals and nursing homes would be filled to the rafters with very sick, frail seniors. And many of those older adults would die before their time.
Those family caregivers often provide assistance with love and compassion, but no skills. That lack of training makes their lives more difficult and makes it more likely that those they are caring for will fall, get infections, or suffer from dehydration or malnutrition. And as family members increasingly are expected to provide nurse-like wound care or complex medication management, their need for training is even greater.
Yet, a new study published in JAMA Internal Medicine (paywall) finds that 93 percent of family members caring for an older adult say they never have been taught how to do this difficult work.
We demand training and minimum staffing levels for aides at nursing homes, where fewer than one-in-10 frail seniors live. But we do almost nothing to prepare those family members who care for about 80 percent of those needing personal assistance. We’d fire a nurse or aide with insufficient skills in a heartbeat. But we seem to expect family members to provide difficult technical care with no training at all.
While study authors Julia Burgdorf, David Roth, and Jennifer Wolff of Johns Hopkins University, and Catherine Riffin of Cornell University calculated the number of caregivers who got some training, they could not analyze the quality or frequency of that preparation.
There is little, if any, any research on the quality of training for family caregivers, but, based on what I’ve observed, it is…variable.
Wonderful programs, and scraps of paper
I’ve seen some wonderful programs. The Schmieding Center in Springdale, AR is one. Affiliated with the University of Arkansas Medical Center, it teaches both basic skills and specialized dementia care to family members as well as to paid home care providers.
The JAMA study did find that family caregivers were twice as likely to receive some training if an older adult had been hospitalized in the prior year. And family caregivers who were paid were four times more likely to receive some training than those who were not.
Some hospitals offer transitional care programs that include basic training in post-discharge care. A few give patients and their families access to bedside caregiving videos, some produced by AARP and its partners in a group called the Home Alone Alliance,
More often, hospitals or skilled nursing facilities do little more than give families a sheet of paper that describes (poorly) how to change dressings on surgical incisions, for example. Or a nurse may spend a few hurried minutes with a family as they were headed out the door during discharge.
But when it comes to how to transfer a frail parent or spouse from a bed to a chair, or how to bathe a loved one, family members get…nothing. This skills gap among family members will become even more consequential given the growing shortage of paid aides in the US.
Recently, states have moved to require family caregiving training in some situations.
About 40 states have passed the Caregiver Advise, Record, Enable (CARE) Act that requires hospitals to tell family members about an impending discharge and advise them about how to implement a care plan. However, the law does not specify what training a hospital must provide.
Washington State’s new public long-term care insurance program will require family members to take training before they can be paid for caregiving with public insurance dollars.
But it shouldn’t take a law to make the health system create such programs.
For example, hospitals have strong financial incentives to reduce readmissions. Well-trained family caregivers may help avoid these round-trips, and facilities could provide necessary education for much less money than the readmission penalties they face.
Managed care plans similarly have a strong financial incentive to help their members avoid needless hospitalizations. Training family members might lower total expenses for plans that are at-risk for the cost of their members’ care.
Even long-term care insurance companies might be able to lower the cost of claims by training family members to help care for loved ones. In effect, with a bit of education, they could provide care that the insurer otherwise would be paying for.
Monetizing a family member’s time to benefit insurance companies or hospitals is itself controversial. But teaching family members how to care for frail elders is not. It is a scandal that nine out of ten are trying to do this difficult work with no training at all.