Caregivers of adults are present with unique challenges in the United States. This week on HealthConnections, Dr. Carole Myers, a professor emeritus in the University of Tennessee College of Nursing, talks to Dr. Joel Anderson, a faculty member and researcher at the UT College of Nursing, about the demographics that make up caregivers and ways to better support caregivers.
WUOT’s Carole Myers: Approximately 20% of U.S. adults provide unpaid care for adults with health needs. What is their lived experience and what opportunities are there to support people needing care and their caregivers? Let’s get started on that Dr. Anderson. My first question, could you provide a profile of unpaid U.S. caregivers?
Dr. Joel Anderson: So, I think the late Rosalind Carter had a great quote about caregivers. She said, “There’s only four types of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who need one.” If we think about it from any point in our life course from the very beginning up until the very end, we are one of those people. As you said, about one in five U.S. adults is providing unpaid care for an adult with health needs and that’s not even counting the folks who are caring for young adults or children. The majority of those caregivers are under the age of 60. I think we sometimes have an idea in our head about what a caregiver looks like, but then you start to look at the caregiver demographic characteristics and they’re a lot younger than they used to be. More young people are taking on these caregiving roles. In fact, over 3,000,000 caregivers of adults in this country are in their 20’s. So, the college students that are walking around the UTK campus, some of them are helping to care for family members and friends. So, I think that begins to give us an insight into the fact that there’s a lot more diversity in caregivers than we’re used to or maybe that we think of and just that alone can help us understand or help us want to better understand how we can support these caregivers.
Dr. Myers: Given the diversity, though, can you paint a picture of what the experiences are like for unpaid caregivers?
Dr. Anderson: One of the things I think is important to talk about is a lot of people who are providing care, who are technically caregivers, they may not see themselves as a caregiver. They may not use that label because they don’t necessarily identify the things they are doing as caregiving. I talk to caregivers and they might say, “Oh, I’m not a caregiver. I just help my neighbor by going and getting their groceries and taking them to doctor appointments.” That’s caregiving. It doesn’t have to be some of the more medical nursing tasks that people might associate with it like helping people manage their medications, helping people check their blood sugar. It can range anywhere from picking up groceries for someone to helping them bathe and get clothed and go to the bathroom.
Dr. Myers: When we think about that, Dr. Anderson, what can we do better for people needing care and their caregivers? How do we address these issues that you have mentioned?
Dr. Anderson: I think it’s important for us to think about who is and isn’t part of the conversation. At a conference several years ago, Peggye Dilworth-Anderson, a sociologist, talked about the latest caregiving facts and figures and reminded us that not all caregivers are being surveyed and we don’t always get all the stories and it’s important to get all the stories so we can develop services and supports for those caregivers. So, whenever we see statistics it’s important to delve in, I think, a little bit more into who’s that actually representing Who’s there and who’s not there? Because again I don’t think people are thinking about 20-year-old college students living as caregivers. We know they are, but we don’t know a lot about their experiences. I also think it is important to have caregivers lead the way and to co-create with them. So, because there are so many services and supports that already exist that are being underused, it may be because caregivers aren’t identifying themselves as caregivers, but it may be because the services and supports that we think caregivers need are actually not what they need. They know what they need. So, I think it’s important to have them in the conversation and co-create these things with them, so we make sure that we are giving them the support that they need.
This transcript has been lightly edited for content.
