Before reading this article, take a moment to think about what the word caregiver means to you.

When you hear the word caregiver, what images come to mind?

What tasks do you think a caregiver does?


Definition

Many people do not identify themselves with the word caregiver because of beliefs and assumptions about what a caregiver is. Sometimes these beliefs are based on the relationship between individuals (such as, spouses for caregivers, or adult children for their parents), the type of care being provided (such as, a person must do physical tasks like giving medication or personal hygiene care to be a caregiver), or the frequency and the amount of time that care is provided.

People will often say that they are not a caregiver because they are ‘just doing what they are supposed to do’ for their family member, friend, neighbour, etc., or they only help out ‘every now and then’. You might feel unsure about whether you are a caregiver.

In reality, the definition of the term caregiver is quite flexible. Below are a few definitions:

 

Government of Quebec

“Any person who provides support to one or more members of their immediate circle who has a temporary or permanent physical, psychological, psychosocial or other disability, regardless of their age or living environment, and with whom the person shares an emotional bond as a family member or otherwise.

The support is continuous or occasional, and short- or long-term, and is provided on a non-professional basis and in a free, informed and revocable manner in order, among other things, to promote the care recipient’s recovery and the preservation and improvement of his or her quality of life at home or in other living environments.

It may take various forms, such as transportation, assistance with personal care and housekeeping, emotional support, or coordination of care and services. The support may also have financial repercussions on caregivers or limit their capacity to take care of their own physical and mental health or fulfill their other social and family responsibilities.” Source

Government of Canada

“A caregiver is a family member or someone who is considered to be like family providing care or support to the person who is critically ill or injured or needing end-of-life care. Care is defined as participating in the care of a critically ill or injured person or someone needing end-of-life care. Support is defined as providing psychological or emotional support to a critically ill or injured person or someone needing end-of-life care.” Source

Canadian Centre for Caregiving Excellence

“Caregivers provide support to people with physical, intellectual, or developmental disabilities, medical conditions, mental illness, or needs related to aging. Caregivers are family, friends and other natural supports (like neighbours or chosen family) who provide care because of a relationship, not as a job or career. The caregiver role is mutually determined by the person and their caregiver(s).” Source

A care recipient is the person who is receiving the care. Caregivers can be of any age and any relationship to the care recipient. Examples of caregivers can be:

  • A partner caring for a partner with dementia
  • A sibling caring for their sibling with Down Syndrome
  • A child or young adult caring for their parent who is ill or has a disability
  • A parent caring for their child with an illness or disability
  • A person caring for a member of chosen family or community who has Multiple Sclerosis
  • A friend caring for a friend with cancer
  • A neighbour caring for a neighbour

The roles of caregiver and care recipient are also flexible, meaning that the care recipient can also provide care to the caregiver. Caregiving is based on an existing relationship, where reciprocity and mutuality are present.

There is also a difference between the terms formal and informal caregiver. Formal caregivers generally refer to health and social service providers who are trained and paid to provide health and social service related interventions and support. These paid support individuals can also be called care providers. Examples of health and social service professionals and care providers who may interact with caregivers include doctors, nurses, social workers, physiotherapists, occupational therapists, personal support workers, respite workers and many more. Informal caregivers do not provide the care as part of their job or career.

“I like to say that there are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers” – Rosalynn Carter, Former First Lady of the USA

Not only does the term caregiver encompass a lot more than what people assume, but there are also millions of Canadians who perform caregiving roles. It is difficult to provide exact numbers on the amount of caregivers across Canada because many people do not self-identify as caregivers. With all these different definitions, it can be hard to know if you are a caregiver.

Why is it important to recognize myself as a caregiver?

Caregiving can have impacts on your health, personal, social, and family life, as well as your employment and finances. It can be important to recognize yourself as a caregiver because there may be support services and resources that exist in your area that are specifically geared towards supporting caregivers. If people do not identify as a caregiver, they may not learn about the myriad of supports that are available. Numerous organizations exist across Canada to support caregivers and advocate for recognition of their important role within our society.

For resources by province, see the Canadian Centre for Caregiver Excellence’s website: https://canadiancaregiving.org/caregivers/caregiver-resources/

If you are still unsure if you are a caregiver, speak to a healthcare professional or consult your local caregiver organization about your situation and needs.

What is a bereaved caregiver?

The term bereaved caregivers refers to caregivers who are grieving the death of the person that they were taking care of. Caregiver Grief Connexion is an initiative to share knowledge, skills, and resources on grief for bereaved caregivers, for their families, friends, and the health and social service providers who support them.

For information about bereavement and the post-caregiving phase, click here. [Links to blog post #2 on caregiving phases]

For statistics on caregiving in Canada:

For statistics on caregiving in Quebec: