By Elizabeth Carrillo, Project Coordinator, Institute for Hispanic Health, NCLR
Often referred to as the backbone of the long-term care system in the U.S., family caregivers provide an annual estimate of $450 billion in unpaid care to their loved ones living with a chronic disease. More than just their economic value to society, however, family caregivers embody a value deeply engrained in Latino culture—familismo, or familism. The importance of immediate and extended family ties is what drives more than eight million Latino caregivers to care for their loved ones on a daily basis. Caregivers usually look after their elderly parents or grandparents, but sometimes also their children or spouses. Compassion, patience, empathy, resilience, humility, and adaptability are all traits embodied in a caregiver, and this November, National Family Caregivers Month, we recognize and thank the important work done by the 45 million family caregivers across the nation.
Caregivers provide varying types and levels of care. They can range from providing emotional care like companionship, to the physical, such as preparing meals, administering medication, and providing wound care. The longer a loved one lives with a disease, the more the disease progresses, which intensifies the caregiver’s role. This makes it increasingly difficult to balance work and life for many Latino caregivers who juggle multiple responsibilities. The hardest hit group is Latinas, since nearly 75 percent of Hispanic caregivers are female, and 67 percent report being the primary caregiver for an elderly relative. Assuming responsibility for aging parents is expected among many traditional Latino families. A study found that while Hispanic caregivers reported caring for their family out of love, the lines between choice and obligation were blurred for many. Despite the challenges and stress that caregivers experience, many reported being happy to care for their family members.
For me, like so many others, these facts represent my reality. My mother has been the primary caregiver for my grandmother and late grandfather for the last 17 years. I have witnessed first-hand the stress and challenges she faces in this role. My grandmother has lived with diabetes for 20 years, and I know that she has lived this long in great part because of my mother’s care. Yet, my mom hardly thinks of herself as a caregiver. For her, caring for her elderly mother is just part of her role as a daughter. This family obligation is a sentiment commonly held among Latina caregivers. Like other Latino families, my mother comes from a large family and in the last five years, has sought the help and support of other family members. Still, my grandmother was recently diagnosed with Alzheimer’s disease and her care will become increasingly difficult. The need for outside resources and formal services will soon emerge.
With increasing longevity—particularly among Latinos—and rising rates of diabetes and Alzheimer’s disease, (two of the top diseases among loved ones cared for by family) the number of family caregivers will also increase. This trend raises concerns about the physical, emotional, and financial costs to the caregiver. For various reasons, including socioeconomic ones, Latino families will continue to turn to each other for help. Nevertheless, changing demographics and generational differences will likely create a shift in the acceptability of seeking outside help. Seeking formal services to help care for elderly family members may help reduce stress among Latino caregivers and help them better balance life and work, while still staying true to that deeply held value of familismo.
For more about the caregiver experience, check out our video highlighting the story of two Latina caregivers in Chicago.