There has been much attention given to “person-centered care” for seniors, but far less given to the role of family caregivers, even by assisted living and other providers working with them on a regular basis. These providers can and should remedy this by taking steps to offer more “family-centered care,” according to a recent report from The National Academies of Sciences, Engineering and Medicine.
At least 17.7 million individuals in the country are providing care to an older parent, spouse, friend or neighbor who needs help. This staggering number raises a real concern surrounding the state of family caregiving in this country, including how assisted living communities support and involve them in resident care.
Even if older adults are in an assisted living facility, there is still often a loved one who is caring for them and giving them support, the report states.
It is clear that preparing providers—including those in residential care settings—to deliver person-and family-centered care to older adults will have multiple benefits for all parties, the report authors assert.
The 297-page report, Families Caring for an Aging America, was compiled over the last two years and released Tuesday with support from 15 sponsors by an expert committee from The National Academies of Sciences, Engineering and Medicine.
The marginalization of family caregivers may not be due to neglect, but come from providers trying to maintain compliance with a web of privacy laws.
“In current care models, there is a huge focus on protecting the privacy and other personal health information of patients,” Jennifer Wolff, Phd, associate professor at Johns Hopkins Bloomberg School of Public Health and member of the Committee on Family Caregiving for Older Adults, told Senior Housing News. “Because of this, a lot of family caregivers who are navigating the system alongside their loved ones don’t have access to information to effectively meet their health care needs. This is why providers need to ensure that family caregivers understand the care needs of the older adults.”
There have been attempts from legislation to give more support to caregivers by putting expectations on providers, but currently the only one passed is the Caregiver Advise, Record, Enable (CARE) Act. It requires hospitals and rehab facilities to support family caregivers by, for instance, providing more in-person instruction on medical tasks, and it has been effective in helping family caregivers; however, it has limited reach, as it covers only 18 states and Puerto Rico, the report states.
More recently, the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act was approved in the U.S. Senate in late 2015 to do just this, including by promoting “family-centered care” in various settings, but at this time the act is still working its way through Congress.
There are some ways caregiving facilities can provide family-centered care even if the legislation has not caught up yet, the report says. Recognizing family caregivers’ involvement in older adults’ care is the first step in training the workforce to provide this person-and family-centered care.
In addition, assessments around caregivers’ willingness and ability to take on the tasks in older adults’ care plans should be done, as well as providing and communicating information to the family caregiver. Simply having the mindset and engaging family caregivers as respected members of the care team can alleviate potential head-butting situations in the future of the older adults’ care.
“The extent to which providers encounter family caregiver of older adults and the nature of their interaction vary substantially depending on the care setting and other factors,” the report says. “Regardless, family-centered care is achievable to some degree across different care setting and providers.”
Written by Alana Stramowski