Three provincial caregiver organizations and another on the way

Pierre Lachaine, Senior Communications Associate

As Ontario’s own caregiver organization comes closer to becoming reality (more on that below), and as recognition of the plight of the caregiver builds momentum in our province, it’s more important than ever for us to learn from those who have blazed the trails we are riding on.

Sharing what we know, and what we’ve learned through personal, hard-fought experience, is the best way for us to collectively make change for caregivers, and improve their experiences. When we stop thinking in terms of us vs. them, my jurisdictions vs. your jurisdiction and my project vs. your project, and start thinking in terms of collaboration and building on each others’ successes and failures, then that’s when a groundswell of change can really start to make an impact.   

A national perspective on caregiving 

On June 16, 2017, our CEO Cathy Fooks facilitated a session at Health Shared Services Ontario’s Achieving Excellence Together Conference called Strengthening Community Care Systems: A National Perspective on Caregiving.

We heard from Canada’s three trailblazing provincial caregiver organizations—Family Caregivers of BC, Caregivers Alberta, and Caregivers Nova Scotia—as well as from Janet Beed, the advisor to Ontario’s  Ministry of Health and Long-Term Care on caregiver issues.

Caregiver organizations can play a vital role in not only the lives of caregivers, but also in the healthcare system as a whole. Angus Campbell, Executive Director of Caregivers Nova Scotia, gave us an alarming statistic: “If care givers were to go on strike tomorrow, it would cost the Canadian healthcare system $66 billion per year.” These caregivers are at their breaking point, and need the support that caregiver organizations can give them—“30 per cent of caregivers are in distress,” Barbara MacLean, Executive Director of Family Caregivers of BC said.

The executive directors of each organization told the crowd about their organizations, and the supports they provide to caregivers in their provinces:

Caregivers Nova Scotia

Caregivers Nova Scotia is dedicated to supporting unpaid caregivers with free programs, one-on-one and peer support, information and educational workshops. Resources include Caregiver Tele-Connect, educational workshops, and The Caregiver’s Handbook, which is filled with tools, tips and resources to support caregivers.

Family Caregivers of BC

Their goal is to improve the quality of life for family caregivers through information, support and education. They provide leadership to strengthen the voice of family caregivers and the significance of their role. Family Caregivers of BC’s work falls under three pillars: education (e.g., webinars, workshops, presentations and resource development), caregiver support (e.g., one on one support and caregiver coaching, information, referral and navigation, support groups, online resource centre) and collaboration & engagement (e.g., health system improvement, participation in research, condition-specific organizations)

Caregivers Alberta

Caregivers Alberta provides resources and programs for caregivers, including COMPASS, a program that includes modules such as putting yourself first, managing stress and navigating the system. They also provide resources for providers, such as the Navigator workshop one-day training for health professionals, service providers and community agency staff to help them better support caregivers.

Ontario’s caregiver organization

Hearing from these organizations was particularly timely for us to hear in Ontario, since Janet Beed told the crowd that she had just recently submitted her recommendations to Health Minister Dr. Eric Hoskins about a new caregiver organization in our province, which she confirmed is in the pipeline. She reminded the crowd that Patients First: A Roadmap to Strengthen Home and Community Care (May 2015) included 10 steps to improve and expand home and community care. One of those steps is to expand caregiver supports.

Although the detail about her recommendations to Dr. Hoskins remain confidential, Ms. Beed did talk about the characteristics that she believes the caregiver organization should have:

  • Evolve over time
  • “By caregivers but not on the back of caregivers?”
  • Focus on general supports
  • Partner with others: reduce silos, minimize duplication, maximize support and expand what exists
  • Recognize unique needs
  • Be cost effective

For those in the room, the sense of momentum, and the sense that the caregiver experience is on the cusp of improving dramatically in Ontario, was palpable. And when it happens, it won’t be in a silo. It will be thanks to those who shared their learnings. 

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