The Ontario Caregiver Organization reported in Spotlight Report 2025 that the number of caregivers is expected to climb to 6.5 million by 2030. In addition, the report highlights the impact of burnout - caregivers continue to report high levels of burnout with 68% saying they have reached their breaking point. When caregivers stop providing care, the impacts are felt by them, the person they care for, our healthcare system, and beyond.
Caregivers are often advised to build their ‘circle of care’ so they don’t have to do it alone, but these support structures are weakening. As this support erodes, caregivers will carry even more of the workload alone, a responsibility they simply can’t sustain.
As above, burnout is an issue but “what keeps caregivers up at night?” Caregiver concern is all about what will happen to the people they care for when they are gone or no longer able to care for them – at risk is increased 911 calls, visits to ER, hospitalizations, substance abuse, isolation and loneliness, food insecurity, homelessness, contact with the law, arrest, and incarceration in the future.
The challenges are significant: as the current mental illness caregiver community ages, it is becoming increasingly more urgent to plan for “when they are gone or are no longer able to provide for the required supports including the impact of caregiver burnout both on those they care for and their quality of life.
A project focused on the development of a tool kit (a survey and draft planning guide) that invited caregivers to share their stories, supporting caregivers’ efforts in planning for when they are gone, raising awareness and involving others that share our concerns
As we apply lessons learned from the literature review and more specifically, examples that highlight the importance of coordination, integration and collaboration, our focus will be on the continued development of planning tools while exploring the possibilities around providing for third party support of caregiver future planning efforts.
Mental health caregivers provide high levels of emotional and practical support as well as covering significant essential living costs and financial support for a range of other costs for the person they care for - emotional and practical supports are the hardest to replace. They (and the person they care for) are ill-prepared for the future – they are seeking support to both develop and implement a plan.
A detailed summary of what we heard and an analysis of findings is presented at the Future Planning for Mental Health Carers Project - Stage One Report March 2026 - findings similar to those highlighted in the OCO Spotlight Report 2025.
o Setting things in motion - A Caregiver Future Planning Pilot Project A pilot project in the Ottawa region supported by third party organizations with the mandate and resources to assist caregivers develop sustainable care, housing, legal, financial, and property management plans for those they care for including access to a coordinated, collaborative and integrated approach to the implementation of their plans when they are gone or no longer able to provide for the required support.
MICA