The demands of caregiving are often invisible, quietly shouldered by parents, siblings, partners, and friends who provide daily support to loved ones with complex needs. This burden is particularly acute for families navigating neurodevelopmental disabilities (NDDs), where caregivers frequently experience high rates of anxiety, depression, and burnout. Recognizing this critical require, researchers, clinicians, and caregivers at the Centre for Addiction and Mental Health (CAMH) are collaborating to ensure that no caregiver is left behind in a system often not designed with their needs in mind.
Caregivers are a diverse group, shaped by a multitude of factors including culture, language, family dynamics, and access to resources. What unites them is often a sense of isolation and the feeling that existing systems fail to adequately acknowledge their contributions, and challenges. A growing movement is advocating for a shift towards co-production, where caregivers are not simply recipients of care, but active leaders and partners in designing, delivering, and evaluating support services.
This collaborative approach is at the heart of a recent initiative focused on scaling sustainable care for caregivers. Researchers have developed and are now working to expand access to innovative interventions like Caring for the Caregiver: Acceptance and Commitment Training (CC-ACT), a group-based program designed to equip caregivers with coping skills and improve their overall well-being. The program, rooted in Acceptance and Commitment Training, aims to reduce distress and build resilience in those providing care for individuals with NDDs.
Co-Led Groups: Empowering Caregivers as Experts
What sets CC-ACT apart is its unique delivery model. Groups are intentionally co-led by both trained clinicians and caregivers themselves, blurring the traditional lines between “provider” and “recipient.” This reflects a core principle of the program: that caregivers possess invaluable expertise born from lived experience, which is essential to effective care. To date, the team has trained over 100 caregivers and 150 clinicians across Canada to deliver CC-ACT, reaching hundreds of families navigating the complexities of NDD-related care.
“The power and impact of partnering with parents and siblings to co-design and deliver the CC-ACT program is essential to its success,” said Dr. Johanna Lake, Scientist at the Azrieli Adult Neurodevelopmental Centre. “We hope this partnered model inspires other programs to think about meaningful ways to involve families in the development of services with and not for them.”
Addressing Systemic Barriers to Access
Although research demonstrates the effectiveness of caregiver-focused interventions, access remains a significant hurdle. Many caregivers who could benefit most from programs like CC-ACT face systemic barriers, including language differences, stigma surrounding mental health, limited institutional support, and inequities impacting underserved communities. Researchers are actively working to address these gaps, recognizing that a one-size-fits-all approach is insufficient.
Specifically, interventions have historically under-represented Black caregivers, fathers, neurodivergent caregivers, transition-age siblings, and Francophone caregivers. Dr. Yona Lunsky, Scientific Director of the Azrieli Adult Neurodevelopmental Centre, emphasized the importance of tailored approaches. “It has been highly exciting to think about who is not in the room when it comes to CC-ACT delivery, and to partner with people outside of our walls to explore ways to further tailor what we have developed so that it benefits more families,” she said. “As a sibling, for example, I need to connect with other siblings whose experience is closer to mine. The words we use and the complexities we navigate are not the same as those described by parents.”
“No Caregiver Left Behind”: A New Phase of Expansion
In 2025, this work entered a new phase with the launch of “No Caregiver Left Behind: Addressing Accessibility and Sustainability of an ACT Intervention for Family Caregivers of People with Neurodevelopmental Disabilities,” a $599,864 project funded through the Kids Brain Health Network and Brain Canada, with a $199,999 contribution from the Azrieli Foundation. The project is co-led by Dr. Johanna Lake (CAMH) and Dr. Kenneth Fung (UHN), with support from a multidisciplinary team including Dr. Brianne Redquest, Dr. Avra Selick, Dr. Yona Lunsky, Dr. Kendra Thomson, Dr. Claire de Oliveira, Lee Steel, Jodie Siu, and Jocelyn Tan, alongside national collaborators and partners.
The project focuses on two key goals: improving accessibility by adapting CC-ACT for diverse, underserved caregiver communities, and ensuring sustainability through regional and national collaboration, policy recommendations, enhanced training models, and advocacy. Community partners, including Holland Bloorview Kids Rehabilitation Hospital, BC Centre for Ability, Scarborough Centre for Healthy Communities, Giant Steps, Siblings Canada, and the Canadian Centre for Caregiving Excellence, will play a vital role in this next stage of implementation.
This initiative underscores a fundamental truth: caring for caregivers is not merely an option, but an essential component of a comprehensive and sustainable care system. The ultimate goal is a future where caregiver mental health support is readily accessible, integrated into existing systems, and available wherever families need it, ensuring that truly, no caregiver is left behind.
To learn more about Acceptance and Commitment Training (ACT), visit actforcaregivers.com.
Disclaimer: This article provides informational content and should not be considered a substitute for professional medical or mental health advice. If you are a caregiver experiencing distress, please reach out to a qualified healthcare provider.
What are your thoughts on the importance of co-designed care programs? Share your experiences and insights in the comments below.
