In collaboration with partners and stakeholders across Canada, the Mental Health Commission of Canada (MHCC) has developed Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit (Mobilization Toolkit)
For Canadians living with mental health problems and illness, caregivers — whether relatives or people drawn from broader circles of support — are critical to recovery. Despite their crucial role, caregivers’ contributions, and the effects of caregiving on their own wellbeing, have long been underestimated and marginalized.
Caregivers make significant contributions
The unique role of family caregivers in fostering recovery and wellbeing among people with a mental health problem or mental illness must be better recognized within the mental health system and society. In the past, much of the blame for mental health problems was unfairly placed on the shoulders of caregivers. That attitude is changing, but more needs to be done to reinforce caregivers’ strengths and to facilitate their healthy involvement in the recovery journey and treatment of loved ones.
The impacts of caregiving
Caregivers often provide a variety of supports, including navigating the mental health system to access services, transportation, advocating for services, and social, financial, and emotional supports. Studies have shown that caregivers can experience a significant sense of personal growth, fulfillment, and purpose through the support they provide to a friend or family member with a mental health problem or mental illness. At the same time, the caregiver’s own health — both physical and emotional — can be negatively affected by the day-to-day demands of long-term caregiving.
The need for increased support
To realize the full benefits of caregiving, it is crucial that caregivers have access to the information and supports they need to sustain their own wellbeing, and that their voices are recognized and respected in Canada’s mental health system. Failure to support caregivers undermines mental health across the entire population, leading to poorer outcomes, both for people living with a mental illness and their caregivers. This also leads to increased health and social service costs.
The MHCC’s Mental Health Strategy for Canada calls for increased levels of support and recognition to help caregivers provide care and foster recovery in people living with a mental illness, and to help caregivers meet their own needs in handling challenges such as stress and loss. Working from these recommendations, the MHCC is championing a number of activities to support Canada’s caregivers.
Standing up for caregiving
The MHCC is working to keep caregiving on the national mental health agenda, where its former Family Caregivers Advisory Committee first successfully positioned it. The Committee’s vision was that family caregivers be given the information, education, guidance, and support to fulfill their responsibilities. To do so, the Committee worked with other former MHCC advisory committees to ensure the caregivers’ perspective was taken into account across the full range of MHCC initiatives. The MHCC continues to apply this important lens to its work.
Promoting national guidelines
The MHCC continues to promote and distribute its guidelines for policy makers and service providers to support caregivers. The National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses offers 41 recommendations that can improve caregivers’ abilities to provide the best possible support to adults living with a mental illness while maintaining their own wellbeing. Former Committee members, MHCC staff, and others oversaw their development.
Attitudes toward caregivers are changing. Their role is increasingly being recognized as crucial to the recovery journey and wellbeing of people living with a mental illness. However, more needs to be done to support caregivers, both by acknowledging and addressing their needs, and by reducing the stigma they still experience.
Contributions and sacrifices must be recognized
Through their unpaid role, caregivers make immeasurable economic contributions to the mental health and social services system. But in doing so, caregivers can hinder their own participation in the workforce, causing serious economic hardship. One study reported that 27 per cent of caregivers lost income and 29 per cent incurred major financial costs related to caring for a family member. Caregivers need access to financial supports like tax credits, caregiver allowances, and respite care. Improved workplace policies such as flexible hours would also help.
Stigma toward caregivers must be confronted
Caregivers face stigma through the notion that they are responsible for a family member’s mental illness. This false belief can lead caregivers to struggle with feelings of shame and guilt. They can also experience "stigma by association" through the stigma faced by a family member living with a mental illness. One study found that caregivers had low self-esteem as a result of stigmatizing behaviour from friends, healthcare providers, and the media. Confronting stigma is an essential component in supporting caregivers and must be given priority.
The Mental Health Commission of Canada (MHCC) created a number of resources to support caregivers of people living with a mental health problem or illness. They are designed to support the mental health and wellness of the caregiver as well as improve the care of their loved one. Click on the links below for more information.