Terms matter, but finding the right term is not easy.
I study the care of older people. I find the terms “formal caregivers” and “informal caregivers” interesting, maybe because I am Chinese.
Formal caregivers are those who are paid to give care, whereas informal caregivers are not paid to provide care. For example, a nurse is a formal caregiver, and a family member is an informal caregiver. But why are family caregivers considered “informal”? Do we not expect families to care about each other?
I am always a bit uneasy about calling families “informal caregivers,” even though I know what the term refers to. In my mind, families are really the formal caregivers, but, obviously, this is not so in some developed countries. For example, members of our school of nursing paid an academic visit to Denmark a few years back. There I learnt that families are not expected to provide care for sick or elderly people though, of course, they may. The state is expected to find the means to provide such care. I was somewhat taken aback at the time. There, in Denmark, was a good illustration of the term formal and informal caregivers.
In the United Kingdom, caregivers are called “carers”; that is, carers are families and significant others. I also feel a bit uneasy about that term. Care can have different meanings. It can mean to care for. That is to say, to provide necessary care activities in life. It also means to care about. But is it not asking too much of a carer that he or she should care about someone?
We provide care for various reasons. Sometimes, we care because we love a person—perhaps wife, husband, mother, or father. Sometimes we care out of a sense of duty, not necessarily caring about someone. And then, of course, sometimes we care because we are paid to do so, or for other reasons. Using the term “carer” to denote the person providing care is a bit heavy to me.
So what is an acceptable term to describe the family member or significant other who provides care to a sick or older person? I cannot think of one. Nor do I think it is wise to make a clear delineation of the differences. It would have too much of a labeling effect.
Sometimes, it is best to leave some areas in life a bit ambiguous, leaving room for imagination, leaving space for people to act out their roles. As I grow older, I have learnt that it is probably best to leave some grey areas. RNL
Claudia K.Y. Lai, RN, PhD, who has practiced nursing in Hong Kong, Canada, the United Kingdom and, briefly, as a volunteer in India, is associate professor in the School of Nursing at The Hong Kong Polytechnic University, Hong Kong SAR, China. Her specialty is gerontological nursing, particularly care of older people with cognitive impairment and issues of long-term care, including caregiver support.