Long-term care isn’t something that many people think about on a daily basis, at least not until we are forced to. Our society doesn’t like to talk about aging, being diagnosed with dementia, needing support in day-to-day life or needing to move to a communal living environment. So, when someone or their loved one needs more care than can be provided in a personal home, it’s often a jarring, stressful and upsetting situation.

“What comes next? Who can I go to for support? How will my loved one be treated here? What’s my role?” — These are all questions that family caregivers have when their loved one moves into a long-term care home. Fortunately, family councils are there to help with information, support and guidance on what to expect in long-term care and how to be an effective advocate for their loved one and themselves.

Family councils are organized, self–led, self-determining and democratic groups. They serve to engage families and their unique perspectives within long-term care. Many councils have positive and productive relationships with the staff and administration of a care home. The relationship between a council and home staff is important, as it helps to ensure good communication and successful activities and initiatives of a council. Family councils play essential roles in making long-term care homes vibrant places to live, work and care.

This June, Family Councils of Ontario is celebrating the important roles family councils play in the lives of caregivers and the long-term care sector as a whole!

The shift in long-term care

The long-term care sector is ever evolving. As people are living longer, with more care provided at home, the needs and characteristics of people living in long-term care have shifted. Models of care are changing — from an institutional model where residents and their family members are passive recipients of care, to a model that centres the needs, interests and abilities of residents and meaningfully engages caregivers in improving not only the quality of life of their resident, but the experiences of all residents, staff and caregivers. That is not to say it’s always a rosy picture.

Today’s residents have more complex needs than those of the past and rely on their caregivers to advocate on their behalf. Despite the tragic impact COVID-19 had on the sector, one of the silver linings was the renewed recognition of the contribution essential family caregivers made — and continue to make — to the long-term care sector.

Families were recognized for the countless hours of direct care they provided to residents to support the work of front-line staff. Building on the existing Long-Term Care Homes Act (2007), the Fixing Long-Term Care Act (2021) continues to recognize the role of family presence and engagement within each home. The Fixing Long-Term Care Act provides additional guidance to ensure the voices of family councils are present and heard.

Honouring family councils

Family Council Week is a chance to reflect on the many ways councils have positively influenced the long-term care sector. Family councils were among the pioneers of cultural change, putting into practice the elements of a social model of care through involvement in long-term care. We are honouring their commitments to long-term care with our annual Family Council Week celebration! This year’s theme — Regroup, Refocus & Recharge — acknowledges the sector is at a turning point where it can begin to explore topics beyond COVID-19.

Regrouping

According to data from FCO's Family Council 360 Survey (2020), 91 per cent of family councils were active before COVID-19, with nine per cent being re-established due to the pandemic. For councils meeting in-person, the implementation of Public Health measures limiting the number of people who can gather as a group meant that councils were unable to meet in person. Some councils were successful in shifting from in-person to virtual meetings, while others have not met since March 2020. As Public Health guidelines and restrictions are lifted, councils are beginning to explore how to work together in a “new normal.” Now is the time for flexibility and innovation as councils explore how to regroup.

Refocusing

Issues with communication early during COVID-19 placed strain on relationships between councils and staff in homes. As family councils refocus, it is important that council members and staff understand the expectations tied to their roles and responsibilities. It is helpful to review the updated Fixing Long-Term Care Act (2021) as a starting point for conversation between family councils and staff working in a home. Move beyond past experiences by having a joint conversation to set the tone of the working relationship between councils and homes and keep everyone engaged in the conversation.

Family councils are also refocusing with a shift to solution-oriented outlooks. Rather than just complain when a shared issue is identified, a council can take advantage of the resources available (for example: reports, webinars and books) and brainstorm potential solutions to share with a home administration that both parties will find beneficial. Presenting potential solutions will promote conversation between administration and families, allowing them to explain why they opted for a specific course of action.

Recharging

The emotional impact of COVID-19 is evident for all stakeholders in the sector. Family councils and members acknowledge the need for self care to address their own needs to recharge. Family Councils Ontario created programs to support councils as they recharge, including our creative writing initiative, virtual family forums and book clubs.

Staff appreciation initiatives have always been popular projects for family councils, who acknowledge the emotional impact these initiatives have in helping front-line staff recharge. Simple gestures such as standing outside clapping for staff at shift change or decorating sidewalks outside the home with messages of inspiration and support were highly successful strategies to allow councils to continue their traditions of staff appreciation. Councils have also put their energy towards staff appreciation by donating funds to provide staff with meals, securing tablets to promote virtual visits and baking cookies to provide some holiday cheer.

Each member of every council makes a difference. Their commitments and perspectives are invaluable in making sure that residents have the best care possible when they move into long-term care homes.

Happy Family Council Week! We hope that you can join us for our Virtual Family Council Week Conference to learn more about the resources available to help families and family councils as they Regroup, Refocus and Recharge.