Canada recently celebrated National Caregiver Day, honouring the estimated 8.1 million caregivers across the country. These “informal” caregivers – typically family members, friends or neighbours – are not paid health professionals, yet they make an immense contribution to our health and social care systems, providing 5.7 billion hours of unpaid care in 2018 alone.
Collectively, those unpaid hours translate to $97.1 billion in economic value. Annually, it would take 2.8 million full-time workers to replace the amount of time that family caregivers spend caring for loved ones.
Our research group has been working with patient partners for almost 10 years, engaging them fully in every stage of the research process. Our recent discussions have been revolving around the issue of just how hidden, invisible and unacknowledged the role of a caregiver is. In celebration of all caregivers across Canada, we are collectively putting pen to paper to raise awareness of this issue and to stimulate action toward supporting family caregivers.
Caregivers are the voices for their loved ones, their connections to the outside world, and their trusted advocates. Those who don’t have a caregiver often get left behind in having their basic needs met. Perhaps that’s not surprising since caregivers devote 19 hours per week, on average, to caregiving duties.
In most cases, caregiving is a 24/7 job that can span years or even decades. While it does bring joy and fulfillment to those who provide care, many caregivers also work full-time jobs and are overwhelmed. They are at risk of depression, anxiety, post-traumatic stress disorder, fatigue and burnout.
Caregivers are at risk of depression, anxiety, post-traumatic stress disorder and burnout.
Despite their overwhelming amount of help, Canada’s health and social systems aren’t tending to caregivers’ needs. Respite, or programs and services designed to provide a temporary break, are difficult to access and carry prohibitive cost constraints. There are not enough support groups in the community, where caregivers could just talk to someone or get help accessing assistive equipment. Informal caregivers also are rarely trained on a range of tasks they need to perform, which can range from safely lifting and moving their loved ones to providing first aid or wound care and assisting with feeding. Formal training sessions like those that care providers take would be of great benefit.
The need for caregivers is only growing as Canada’s population ages and the pool of informal caregivers shrinks. While the vast majority of Canadians prefer to age at home, better home care and supports for unpaid caregivers are needed if aging Canadians are to maintain their quality of life. Ultimately, supporting caregivers in full would require comprehensive investment in community- and home-based supports, not just in institutionalized settings. Effective strategies that have been successful elsewhere have yet to become commonplace in Canada.
Caregivers are an essential part of frontline health care. With inadequate supports in place, compounded by the system-level strain and significant shortage of paid care providers in community, home and long-term care, gaps in care fall onto informal caregivers. Despite frequently voicing their concerns and offering potential solutions, caregivers feel that no one is listening and acting on this information. They see numerous recommendations for policy change, yet no apparent accountability for executing them, creating a sense of distrust in the system.
Canada can and must do better! It is time that our system starts actively supporting caregivers by helping them maintain their physical, mental and financial well-being. Until caregiving is seen and valued as an essential public health service, we will continue to witness millions of care-dependent Canadians and their caregiving loved ones losing a quality of life that should be guaranteed.
We would like to acknowledge Christine Bibeau and Don Mastin, patient advisors with more than 10 years of caregiving experience who contributed to this piece through their experiences and stories.