Bold statement: Caring for caregivers isn’t a bonus support option—it's the foundation that keeps families and systems functioning. But here’s where it gets controversial: without scalable, accessible approaches, even the most well-meaning programs leave vast numbers of caregivers behind. No Caregiver Left Behind reframes caregiving as a shared, systemic challenge and outlines a practical path to sustain those who sustain others.
From lived experience to collective need
Caregivers come from all walks of life—parents, siblings, partners, and friends—each bringing unique identities, cultures, and circumstances. Their roles are influenced by culture, language, family dynamics, gender, neurodiversity, and access to services. A common thread, however, is a sense of isolation and a sense that systems were not built with them in mind.
In response, CAMH researchers, clinicians, and caregivers have joined forces to treat caregiving as a communal experience that demands collective solutions. The shift toward co‑production means caregivers aren’t just participants; they are leaders and partners in designing, delivering, training, and assessing support.
How research is helping the helpers
To address the mental health needs of family caregivers of people with neurodevelopmental disabilities (NDDs), a multidisciplinary team—clinicians, scientists, caregivers, and trainees—co‑developed Caring for the Caregiver: Acceptance and Commitment Training (CC‑ACT). CC‑ACT is a group‑based intervention rooted in Acceptance and Commitment Training, designed to equip caregivers with coping skills, reduce distress, and improve overall well‑being.
What sets CC‑ACT apart is its delivery model. Groups are co‑led by trained caregivers and clinicians, blurring the traditional lines between “provider” and “recipient.” This approach embodies the program’s core conviction: caregivers possess essential expertise for effective care.
Thus far, the team has trained more than 100 caregivers and 150 clinicians across Canada to deliver CC‑ACT, and hundreds of caregivers nationwide have participated. This demonstrates both feasibility and positive impact for families navigating 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,” says Dr. Johanna Lake, Scientist at the Azrieli Adult Neurodevelopmental Centre. “We hope this partnered model motivates other programs to meaningfully involve families in developing services with them, not just for them.”
Underlying CC‑ACT is research showing that caregiver‑focused interventions are foundational, not optional. Supporting caregiver mental health strengthens families, sustains caregiving, and ultimately benefits people with NDDs themselves.
Yet evidence alone isn’t enough to guarantee access.
Barriers to access—and the need to scale
CC‑ACT faces real‑world hurdles. Many caregivers who could benefit most encounter systemic barriers—language differences, stigma around mental health, limited institutional support, and inequities affecting under‑served communities.
Historically underrepresented groups include Black caregivers, fathers, neurodivergent caregivers, transition‑age siblings, and Francophone caregivers. Addressing these gaps requires intentional adaptation, not merely wider dissemination of an unchanged model.
“It’s exciting to consider who isn’t in the room when CC‑ACT is delivered, and to partner with people outside our walls to tailor what we’ve built so it benefits more families,” says Dr. Yona Lunsky, Scientific Director of the Azrieli Centre. “As a sibling, I know the words and complexities differ from those of parents, and we must connect with others who share similar experiences.”
Long‑term sustainability also depends on embedding caregiver support into systems through policy, funding, and national training models.
Where we’re going next
In 2025, the 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, funded by Kids Brain Health Network and Brain Canada.
The project—valued at $599,864 with a $199,999 contribution from the Azrieli Foundation—is co‑led by Dr. Johanna Lake (CAMH) and Dr. Kenneth Fung (UHN), with support from other experts. It pursues two parallel goals:
- Improving accessibility by adapting CC‑ACT for diverse, under‑served caregiver communities through local teams.
- Ensuring sustainability via regional and national collaboration, policy recommendations, improved training models, and advocacy.
Collaborative partners include 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, all contributing to this next stage of implementation.
A collective commitment
Caring for caregivers is not optional; it is essential. The aim is clear and ambitious: to create a future where caregiver mental health support is accessible, sustainable, and embedded wherever families need it—so that, truly, no caregiver is left behind.
Learn more about ACT at https://www.actforcaregivers.com/ and explore how this approach could reshape caregiver support in your community.
