Who Is a Caregiver?

Imagine a couple in their early 70s—let's call them Naomi and Will. For years, Naomi has prepared every meal for Will. The joke among their friends is that, when it comes to the kitchen, all Will is good for is heating up a can of soup. But now, Will's memory has been slipping; he's forgotten how to turn on the stove. So Naomi must cook for him, because he simply cannot cook for himself anymore.

Has Naomi suddenly become a caregiver, even though she is doing what she has done for years? She might not think so, but the work she is doing is certainly providing care to Will.

We codirect the RAND Epstein Family Veterans Policy Research Institute, where we just released a new study sponsored by the Elizabeth Dole Foundation, finding that over 40 percent of American adults, representing 105.6 million people, are caregivers to adults who are wounded, ill, or injured. (Injuries are damages to the body; wounds are types of injuries that break the skin. In the military, wounded generally refers to occurrences in combat or overseas, while injuries describe what occurred at home.) Of those 105.6 million caregivers, 14.3 million are caring for a service member or veteran.

This is quite a high number. Previous studies, including our own, had found that about 22 million adults considered themselves caregivers. But the way those studies captured this population had to do with how people answered a relatively straightforward question: “do you provide unpaid care or assistance to an adult with an illness or injury?”

Like Naomi, many of us who regularly provide care for someone else may not think of ourselves as a caregiver, or may be unsure what “assistance” means in the context of that question.

Which is why, instead, we decided to count someone as a caregiver if they answered “yes” to any of a series of questions about whether, in the past 30 days, they provided assistance to someone who has a wound, illness, injury, or other condition for which they may need support. We asked about traditional caregiving activities like personal care (bathing, dressing, feeding), giving medicines or treatments, helping get in and out of beds and chairs, and providing transportation to medical or mental health appointments.

But what about individuals who help persons with mental health conditions manage their moods, or avoid psychological triggers? One caregiver we interviewed described their caregiving this way: “Here at home I have to have all his medications locked up in a safe, because he has tried to take his life before, and one of the things he has done that with is medications. My biggest challenge is to make sure that he doesn't try to take his own life again.” So we also asked about helping someone manage symptoms of psychological disorders (depression, anxiety, or posttraumatic stress disorder).

Or what about those who forget things? Close to 7 million individuals over age 65 in the United States live with dementia, and they are often surrounded by people who help them out—who give them care. A caregiver to a Vietnam veteran with dementia told us that they know other caregivers in similar predicaments: “They all have the same problems. The people they take care of are argumentative and they don't remember stuff.” So we also asked about helping someone remember things that, due to a condition like a brain injury or dementia, they may be prone to forget.

We counted as caregivers individuals who helped arrange for medical or psychological services (finding appropriate providers, making appointments). And finally, if there was something we missed, we asked whether they helped with any other tasks that people with wounds, illness, or injuries may have difficulty performing themselves.

We didn't impose many requirements, such as the minimum hours per week one spent providing care. In fact, our only requirement was that, to be be counted as a caregiver, you are not doing it as part of a paid job. You don't need to be a family member to be counted as a caregiver, although organizations offering support to caregivers, including VA, may use the term “family caregiver” in advertising or determining eligibility for their services. Using our broader approach, it turned out that there are a lot of people helping their friends and neighbors; we also learned that many siblings, aunts, uncles, nieces, and nephews are caregiving as well.

One of the big takeaways from our research is that caregiving doesn't end when families decide it is appropriate for someone to move into an assisted living facility or nursing home. That's why we didn't require that the person live with the person they are caring for, and they could also be caring for someone in such a facility. The wife of a Vietnam veteran who lives in an assisted living facility told us “even though they are no longer at home, we are still caregivers. And in some ways, having them reach the point that they have to be in care, the caregiving actually becomes more difficult.”

On the one hand, the fact that over 100 million people are serving as caregivers is positive news: we are a nation full of people caring for one another. If the U.S. government paid caregivers for every hour they spend providing this care, it would cost well over $100 billion.

But caregivers also have a lot on their shoulders. Many are working, but due to their caregiving responsibilities, many caregivers have to cut back their work hours, switch jobs, or leave the labor force altogether. Our estimates suggest that these disruptions cost caregivers approximately $5,000 in household income per year.

These caregivers also have emotional needs. Many tell us that they are excessively stressed, sometimes in surprising ways. For example, many caregivers help arrange care from a distance, visiting the individual a few times per week or per month. Our research reveals that these caregivers are even more stressed than those who provide most of their care in-person.

Exactly who counts as a caregiver is not just a philosophical question or academic exercise. Supporting caregivers is a national priority. Last fall, President Biden unveiled his Care executive order. It set forth ambitious goals to improve support for caregivers, increase access to resources, and provide more care options for families.

Although the past year has seen significant progress in many of these areas, fully realizing these goals will require in-depth understanding of the individuals who take on caregiving responsibilities. That's why, when we embarked on our research, we took a step back to ask: “Who is a caregiver?”

We decided upon an inclusive approach, one that would ensure that all caregivers— including spouses caring for their partners, individuals visiting loved ones in nursing homes, and family members managing anxiety or depression—could receive the support they need. But it has led us to consider whether there really are caregivers and non-caregivers, or whether caregiving is something that everyone has done or will do at some point in their lives. Such work may last longer for some people than it does for others, and its impact on us will vary. We hope our approach to defining caregiving more broadly will help ensure that the support will be there for all of those who might need it.