Nearly one in five American adults provide unpaid care to another adult with medical or functional needs, according to a 2020 report by the National Caregiving Alliance — and the numbers are increasing. Mina Raj, a professor of health and kinesiology at the University of Illinois Urbana-Champaign, studies caregiving, its challenges and shifting demographics. In an interview with News Bureau biomedical sciences editor Liz Ahlberg Touchstone, she discussed the personal and policy supports that can benefit caregivers, and by extension, the patients for whom they provide care.
Who are caregivers? What are their demographics, and how have they been changing?
A few years ago, the National Alliance for Caregiving estimated that 53 million Americans are caregivers for an adult relative, friend or even a neighbor with aging, disability or other health condition. Last month, the RAND Corporation, a research institute, estimated that that number is actually 103 million Americans who are supporting another individual with health-related tasks, meal preparation, health care coordination, mobility, transportation and so on.
Based on research, we know that caregivers are predominantly female. There is a growing population of sandwich generation caregivers, meaning that they are supporting a child as well as an older or an adult relative. We also have a growing population of young adults and even children who are supporting grandparents and parents. We have an aging population as well, which means that we have more older caregivers who are supporting spouses, partners and the oldest adults, those in the 85 plus age group. These are some highlights of the growing populations of caregivers.
What are some of the challenges that caregivers face within the health system as they are trying to provide care for someone?
A big part of my work is looking at how we can better engage family caregivers within the health care system. We know that for in-person visits, family caregivers often accompany their relative in the clinic. They are given information and resources on the spot. But now that we have a new model of care that increasingly uses telehealth, patient portals, online and video-based health care visits, we don't really have a good model for how to involve caregivers in that way. Caregivers are left with insufficient information. They don't always know what their relative has been told or what they are supposed to do.
So we really need to think about how to engage family caregivers in the health care system in a formal, standardized and consistent way across the U.S., where a lot of these policies and opportunities tend to also vary by state, which adds another layer of complexity.
What kinds of policy or culture changes within health care could help?
One of the ways that we can engage family caregivers is by reimagining what the health care team looks like. Caregivers have observations, experiences and longitudinal evidence of how their relative functions in the home. They know their needs and preferences. Caregivers often are providing that information so that clinicians can best support the patient.
One of the groups that I focus on in my research is culturally diverse caregivers: caregivers from different racial, ethnic and cultural backgrounds who may face things like language barriers or different cultural norms and beliefs in the home versus what they're hearing about in the health care setting. How do we enhance policies to be more inclusive for these family caregivers?
What are some of the personal challenges caregivers have reported facing, and what kinds of support could help?
One emerging area in my research is focused on nutrition services. More than half of family caregivers are responsible for preparing meals in the home, and special diets often are related to chronic conditions. However, caregivers aren't typically given a whole lot of information about nutrition or how to prepare specialized meals. In my work, I've heard from caregivers saying that they're basically trying to learn nutrition in a week so that they can better support their relative in the home. Our team just published a paper urging the expansion of Medicare policy to allow for caregiver nutritional training, and how the policy could be optimized to support caregivers.
Respite care is another service that can give caregivers a break and the opportunity to care for themselves. However, respite care tends to be very much underutilized across the U.S. Many caregivers don't know about respite care or how to access services. Caregivers may feel guilt or shame associated with leaving their older relative to engage in self-care. Additionally, there are accessibility obstacles; for example, if respite services are only offered in English, that becomes inaccessible to caregivers with limited English proficiency. Changing the conversation around what respite services can look like and the range of those services, and then working to educate caregivers on the benefits associated with respite services could be very helpful.