Understanding caregivers and echoing their voices is an important component of the mandate of Caregivers Nova Scotia (CNS). Our twenty years of experience working with thousands of Nova Scotians has led us to realize that there is a need to establish appropriate caregiving language, making sure that the terminology is acceptable to caregivers and care recipients.
Caregivers need to be talked to and about in language they understand. It is our goal to ensure that such language is also adopted by government, health professionals, media, and by the public and private sectors. On the basis of our extensive interactions with caregivers and those they support, we have adopted the definitions below.
The Terms We Use:
Care Recipient: A person who receives care from an unpaid caregiver, paid care provider, or volunteer, either at home or in a facility.
Care Provider: A person who provides care and receives a salary or wage for their time. Care providers can range from a personal care worker or Continuing Care Assistant (CCA) to a healthcare professional such as a nurse (LPN, RN, NP), occupational therapist (OT), physiotherapist (PT), dietician (DT), physician (MD), pharmacist, and other licensed clinical professionals. They may be employed, self-employed, or contracted to work in facilities, clinics, offices, or at the Care Recipient's home.
Caregiver: A person who gives unpaid care to someone who has a physical or mental health condition, or is chronically ill, frail, or elderly, either at home or in a facility. Caregivers may be spouses, adult children or in-laws, parents, siblings, youth, extended family members, friends, neighbours, or family of choice.
Family/Friend Caregiver: In addition to ‘caregiver’ we support the term ‘family/friend caregiver’. The addition of ‘friend’ is inclusive and reflects the reality of who caregivers are. According to a 2013 Statistics Canada report: “Caregiving was not limited to helping family members…the second most common category of care-recipients was close friends, colleagues or neighbours at 16%.”
Care Recipients, Caregivers, and Care Providers together are Partners in Care.
The Terms We Avoid:
Care Partner: Caregivers, Care Recipients, and Care Providers have told us that the term ‘Care Partner’ is confusing, and they do not understand what it is supposed to mean. Some Care Providers believe they are the Care Partners. Consequently we cannot use this term as it is important that language be clear and understood by all.
Carer: 'Carer' is a term used in other countries such as the U.K., Australia, and New Zealand. Canadian and American caregivers do not self-identify with this term., and CNS has received negative feedback from caregivers regarding its use.
Informal Caregiver: Family/friend caregivers are not formally trained, and they do not work in a formal healthcare environment such as a hospital, but there is nothing ‘informal’ about what they do. Caregivers have told us the term ‘informal caregiver’ is insulting and diminishes and invalidates both their role in their loved one’s life and the nature of the care they give.