What's in a Word?

The word “caregiver” is often used indiscriminately to describe medical professionals and social workers, as well as family members and friends who provide unpaid services. This loose use of language contributes to keeping caregivers invisible. There is a world of difference between a doctor, seeing a patient for 10 minutes every month, and a wife changing her husband’s diapers several times a day.

I prefer to use the term “care provider” to describe professionals who see clients at appointment times, are paid for their services and work within a clearly defined sphere of influence—doctors, nurses, social workers, physical therapists, home heath aides, etc. I reserve the term “caregiver” to describe the person responsible for performing the myriad tasks required on a daily basis—the volunteer or the draftee, usually unpaid and often unrecognized.

Many caregivers are family members, but there are also many caregivers who are not family in the traditional sense—partners, friends, neighbors. Ask anyone who worked in the HIV epidemic about the crucial contributions that were made, and are still being made, by friends and neighbors and even total strangers, in caring for people for whom help from family was a distant dream.

Why is this important? Language shapes perception. Words have meaning. Their use has consequences. Titles connote value and prestige—doctor has more weight than nurse, which has more weight than caregiver.

Some people use the term “lay” caregiver to distinguish the personal from the professional caregiver. This creates a problem for me. The word lay connotes a hierarchy, such as exists between a priest and a congregant, where role of the laity is to pray, pay and obey. It carries the implication of “less than”—less educated, less aware, less capable, less invested. I and many other caregivers have encountered doctors who see themselves as the Authority who must be obeyed and paid and never questioned.

I also bridle at the term “informal” caregiver. Informal carries the connotation of casual, unstructured and “laid back.” This simply does not apply to the intricate and taxing responsibilities of the personal caregiver, which require precision and attention to detail when dispensing medications, performing tube feedings, keeping track of medical records and appointments, etc.

In the interest of having an honest and fruitful conversation about caregiving, it’s helpful to be precise about job descriptions, avoiding terms that consciously or unconsciously demean the job of caregiver.