Known at the time as Jewish Family Services of Montreal, the organization that was to become the Centre local de services communautaires (CLSC) René-Cassin in 1991 began hearing of family caregiver burnout through its case managers.
1992 - 2015
Once established, CLSC René-Cassin quickly stood out for its cutting-edge expertise and research initiatives in social gerontology. This approach earned it the designation Institut universitaire de gérontologie sociale du Québec (IUGSQ — University Institute of Social Gerontology of Quebec) in 1994.
CLSC René-Cassin began developing caregiver support services in 1993. In 1996, the Caregiver Support Centre was launched after an assessment of the CLSC’s respite services program, the “Drop-In Centre,” revealed that the occasional or emergency relief provided to caregivers through the program was insufficient, pointing to the need for additional support. The Caregiver Support Centre was structured around two main axes: “services” and “cutting-edge services.”
The axis "services", whose operations were overseen by seven employees, 35 student interns and 35 volunteers, comprised five initiatives:
- The Drop-In Centre offered caregivers several hours of respite between Monday and Friday. A short-term intensive program also gave caregivers a maximum of 20 full days of respite per year. Three types of activities (cognitive stimulation, physical stimulation and creative stimulation) were available based on participants’ level of loss of autonomy or incapacity.
- The In-Home Stimulation Program offered recreational activities adapted to the needs and interests of elders who lived at home and were cared for by a family member. Much like the respite services, the program aimed primarily to give caregivers a break.
- The Foyer Program provided family caregivers with information and assistance (support groups, one-on-one consultations, talks and seminars). The program aimed to encourage carers to voice their concerns and needs as well as use the available services.
- The caregiver assessment and short-term counselling program had two components. The first aimed to pinpoint caregivers’ needs so as to refer them to the appropriate services. The second offered support through short-term (six- to eight-week) individual counselling sessions that addressed a range of issues: coping skills, stress management, setting personal limits, connecting with respite and support programs, and so on.
- A peer support service, the Info-Caregiver Telephone Line, was set up to put caregivers in touch with each other so as to help break through isolation.
The second axis, cutting-edge services, had the following mandate:
- Launch and participate in research projects
- Provide professional training
- Publish articles in scientific and professional journals
- Present at conferences
- Ensure knowledge transfer
- Work closely with clinical and research partners in the health and social services network
- Organize annual conferences for caregivers and professionals
- Develop partnerships
- Provide leadership in the Domain of Expertise in Caregiving
Initiatives under this section included the CARE tool, designed by CREGÉS researchers and made available in 2001, and the Care-ring Voice, a free, bilingual and confidential program created in 2004 that provided information and support to caregivers and their families through teleconferences. The “Not Superheroes” campaign created in 2010 was a Care-ring Voice initiative.
The quality of these various undertakings earned the Caregiver Support Centre the 2002 Best Practices award from the U.S.-based National Alliance for Caregivers. Lucy Barylak, the Centre’s founder, was also honoured with a Queen Elizabeth II Golden Jubilee Medal in 2003, followed by a Queen Elizabeth II Diamond Jubilee Medal in 2012.
The Centre continued to provide its services through a number of administrative reforms. Designated a University-Affiliated Centre (UAC) in social gerontology in 2002, CLSC René-Cassin was absorbed into the Centre de santé et de services sociaux (CSSS) Cavendish in 2005 by decree of the Ministère de la Santé et des Services sociaux (MSSS). CSSS Cavendish was designated a UAC in social gerontology in 2007. The Caregiver Support Centre remained operative until 2015, when the Barrette reform and resulting budget reassignments brought about its closure.
2015 to today
Despite the Centre’s closure, the CIUSSS West-Central Montreal (which absorbed the CSSS Cavendish in 2015) has lost none of its caregiving expertise. Through MSSS support for the UAC social gerontology designation and through FRQSC funding as of 2006 for the Centre for Research and Expertise in Social Gerontology (CREGÉS), the team for the Development of Leading Practices in Caregiver Support — initially part of the Caregiver Support Centre’s cutting-edge services, and which became the Domain of Expertise in Caregiving in 2019 — has been able to pursue its activities and continue collaborating on various research fronts. These include input into the development of tools and the improvement of caregiving practices and policies, involvement in various committees within the health and social services network (RSSS) and the community sector, and overseeing knowledge transfer to its many partners.
Below are some of the achievements, involvements and projects of the Domain of Expertise in Caregiving from 2015 to the present day:
2015: Development and hosting of interactive workshops for families caring for persons living with serious illness, in cooperation with the Domain of Expertise in Palliative Care.
2016: Co-organizer of the Current and Future Challenges in Caregiving conference, in cooperation with Concordia University.
2018: CIUSSS West-Central Montreal is mandated by the MSSS to provide an overview of caregiver services and support. The final report, published in 2020, is available on the CREGÉS website (available in French only).
2018 to 2020: Participation in the development of Bill 56, aimed at recognizing and supporting informal caregivers, and in modifying various legislative provisions along with the resulting policy (specifically, by taking part in consultations, expert committees and a parliamentary commission on the topic as well as publishing a paper).
2019 and 2021: Organization of two ACFAS (Association canadienne francophone pour l'avancement du savoir) conferences on caregiving, entitled respectively Mise en lumière d’enjeux émergents dans le champ de la proche aidance, de la naissance à la fin de vie in 2019 and L’expérience empirique et scientifique à l’épreuve de la politique : regards croisés sur la proche aidance in 2021.
2020: Participation in the production of Montreal in Mourning: Facing our Losses Together. Guide for Collective Mourning Rituals During the COVID-19 Pandemic and the development of the tool Cartography of Factors Influencing Caregivers’ Experiences of Loss.
2022: Entrusted with a ministerial mandate to develop training for RSSS and community practitioners, professionals and administrators on the characteristics and needs of informal caregivers, the actions to prioritize, and a partnership-based approach to delivering health care and services, in accordance with Measure 19 of the Quebec government’s 2021–2026 action plan for caregivers.