There’s no way to sugarcoat it: There are 53 million Americans in this country providing unpaid care for a loved one living with a serious medical condition, illness, or disability, Jason Resendez, president of the National Alliance for Caregiving told National Press Foundation journalism fellows. That number from 2020 is 10 million more than in 2015, so America is well on its way toward the oft-noted “caregiving crisis.”
Resendez said 40% of family caregivers are in so-called “high-intensity care situations,” measured by the hours of care per week, the number of activities of daily living, instrumental activities of daily living, and complex medical tasks provided.
“That high intensity we find to be associated with harsher economic consequences and harsher self-reported health consequences,” Resendez said. “That’s 12 million Americans who say that their health is worse due to the unpaid family care that they’re providing — unpaid care that, for many of them, they have no choice in providing.”
In other words, caregivers are suffering as much as the people they’re caring for. But Resendez noted a poignant irony for many caregivers.
“Over half of unpaid family caregivers report a sense of purpose and fulfillment from the care that they provide. This is something, certainly in the case of my mother, it was a cultural honor to provide that care, a cultural expectation to provide that care, but that also came with a sense of personal fulfillment because of the innate value that is seen in that care.”
The data seems to suggest that this fulfillment is perhaps a buffer for some of the negative consequences, Resendez said.
“For example, women of color have the highest rates of fulfillment when it comes to providing care, and we see that despite all of the things that we mentioned earlier, higher rates of self-reported poor health, higher rates of financial impacts. Women of color are more likely to report lower emotional distress when we see higher emotional fulfillment.”
Coordinating care is also becoming more difficult despite technological advances.
“Over a third of family caregivers report that they find difficulty in coordinating care for their loved ones, which is up from 2015, and I find this really fascinating when we think about the number of apps and number of resources available to help support care coordination,” he said. “We talk a lot with innovators in the space, developing mental health apps, care coordination apps, team apps, scheduling apps, which has really blossomed over the last five years. But when you look at the data on coordinating care, we are not seeing a population-level impact.”
Access the full transcript here.
The America’s Long-Term Care Crisis Fellowship is sponsored by AARP, which also sponsors the AARP Award for Excellence in Journalism on Aging. NPF is solely responsible for the content.
