Caregiver, Care Partner, Companion? Why Language Matters

When I became a caregiver for my late husband in 1990, I was labeled an "informal caregiver."

"Just because I am not paid," I thought, "what I do each day and night for a man who has quadriplegia caused by a traumatic brain injury is hardly 'informal.'"

As the AARP-led survey Home Alone Revisited explains, "The label informal reflected the understanding of what caregivers did—household chores and personal care activities, duties that most caregivers could readily perform." This survey, published in 2019, and the one that preceded it, demonstrated that many caregivers also performed "medical/nursing tasks" for which they were poorly trained.

When possible, I chose to call myself Howard's "family caregiver." Some colleagues didn't like that term because "not all caregivers are family members." Yet, terminology has evolved to reflect reality. As Jean Accius II, senior vice president at AARP, said in an e-mail, "Human beings, at our deepest core, want to be seen. We want our experiences validated and to know that our voices matter."

Now it is widely understood, although not always explicit, that family caregivers include both relatives by birth and marriage and chosen family, as well as friends, neighbors, and community members. 

Families were always assumed to be caregivers for their older and ill relatives. The modern discussion dates from 1966 when the Medicare and Medicaid programs were established. Then, paying for care for an aging and poor population became a government responsibility, at least partly, but now it has a new urgency. Over 50 million Americans have entered the ranks of caregiving because family members or friends have been diagnosed with cancer, heart disease, dementia, and other common diseases. Still, others have become caregivers in the twin pandemics of COVID-19 and its variants or opioid or substance abuse disorders.

Words matter and none are so fraught with meaning as those applied to us as individuals. Gender, sexuality, race and ethnicity, religion, and other characteristics are in flux — identity is often seen as a spectrum, not an either/or, and changeable almost at will. For example, pronouns used to be discussed only by grammarians; now, emails and other forms of identification include the writer's preference for pronouns such as she, hers, and they. And for many, the terminology is settled; caregiver is the preferred term.  

Next Avenue uses the word caregiver, as do all the major caregiving organizations. Still, every advisory board I have been on begins its work with a discussion about terminology. Beyond the recognition that not all clients or potential clients embrace "caregiver," a practical reason is that services for people who provide care for an older, disabled, or ill person will find help, if it exists, under the rubric of "caregiver" resources or supports.  

Indeed, what that person likes to be called and needs to know to access services may differ. 

Some organizations are beginning to discuss alternatives to "caregiver," for the most part, "partner." "Partner" entered the caregiving language during the AIDS epidemic to denote same-sex couples; it is now used much more broadly, particularly among younger heterosexual couples, instead of "boyfriend" or "girlfriend." 

But the use of the term is still not fully incorporated in caregiving language. The Huntington's Outreach Project for Education website at Stanford (HOPES) asks, "What is the difference between a care partner and a caregiver?" The answer: "The difference between a one- versus a two-way street. The term [caregiver] suggests that the recipient of care takes a passive role."  

The National Aphasia Association distinguishes the terms similarly to "connote the partnership between the person who needs care and the person who gives it." The Michael J. Fox Foundation uses "care partner" as well as "caregiver" but seems to prefer "partner" in its advocacy for people affected by Parkinson's disease.

The diseases addressed by these organizations are all long-term chronic conditions that affect mental and physical functioning. It is reasonable to consider the person needing assistance a partner for decision-making and other aspects of care. But does it work for advanced dementia or terminal cancer where the term may have an emotional resonance but not a functional one? 

People who are caregivers by any definition may still say: Am I a caregiver, or am I a partner? Could I be both? Wouldn't it be simpler to call people like me "helpers," "supporters," or "companions"? The British call us "carers," why not use that term?  

Caregivers from ethnic communities may say, "There's no word for the caregiver in my language," or "I am his daughter; isn't that enough?"

The National Aphasia Association conducted an informal survey of clients, caregivers, and professionals. Overall, care partner was slightly more preferred (45%) than caregiver (41.3%). A substantial number (12.5%) liked both terms, and a few (1.3%) did not like either term. However, respondents who were caregivers preferred that term (54.3%) over care partner (30.4%). More detailed results are available online. A scientific study involving caregivers (or partners) who care for people with different diseases would give us more insight into differences or similarities. 

Men might be considered an underserved caregiver population. Jean C. Accius of AARP wrote in the e-mail cited earlier, "Caregiving can be a lonely experience. This is often the case for men because caregiving has traditionally been viewed as a woman's role. AARP Family Caregiving provides an easy way to join an online community and connect with others who understand caregiving challenges."  

Similarly, Jack's Caregiver Coalition, an organization in Minnesota that provides social, practical, and emotional support to men who are caregivers, calls them "guy caregivers." Kyle Woody, co-founder, and executive director explained in a Zoom call, "This term makes it easier for men to ask for help and gives them an identity in which they feel comfortable." The website adds: "Face it, guys, caregiving is a colossal challenge. It's not just hard. It's probably the hardest thing you'll ever do." 

Sensitivity to language, however, is not the only need. Terry Davis, Chief of the Division of Healthcare Disparities at Louisiana State University Health Shreveport, and a health literacy expert, reminded me in a phone call, "In rural areas, there are not enough services, so caregivers don't worry about what they are called; they just want help." 

You can do a lot to be called by your preferred name. Ask the health care team for an opportunity to express your terminology preferences and discuss what the difference means to you. Kathleen Kelly, executive director of the Family Caregiver Alliance, said in a phone call, "This should be a respectful process in which the family defines their role and preferences." 

Clarify what you are expected to do and what limits might be set. This discussion could be revisited later as your caregiving demands increase or diminish. In addition to talking to others, look up "caregiver resources" on websites and Google searches. Enlist a young family member to help with the online search. And talk to the person you care for about their preferences.  

Depending on where you live, and your financial assets, the list of resources and services may be long or nonexistent. Don't give up!  Think about what you used to or have always wanted to do. Then try to find something that fits into that category. The first step is the hardest. Ask friends and family for advice and help.  

And remember being a caregiver does not define you. You are also a person with likes, dislikes, strengths, values, and anxieties. To be the best caregiver possible, be as true to yourself as you are true to the person in your care.