Have you ever wondered when is the right time for a loved one to transition into long-term care? Whether it is your elderly parents or another family member that requires special support in their daily activities, it comes a time when home care provided by family caregivers is not enough and decisions need to be made. To speak about this transition process and the ways in which families can help their loved ones receive better care in their new facilities and have an easier adjustment period, we spoke to Sam Peck, Executive Director of Family Councils Ontario (formerly Family Councils’ Program) who has helped numerous family caregivers and long-term care home staff improve their work to achieve the best possible outcomes for residents and patients.
This is what Sam told us:
SAM PECK: Each family situation is so different. So the transition is dependent on I think a number of factors. The care needs of the person who is going to be moving into long term care. The vast majority of long term care residents over the age of 85 have multiple underlying health conditions. Most, upwards of about 70% have a diagnosis of some sort of cognitive impairment like dementia. So that's often what puts families in the position of needing to make that decision, that transition where they can't care safely or well for their loved one at home.
And caregiving is hard. Caregivers in the community, it's 24/7. And so there's a high degree of caregiver burnout because there isn't enough home care available for folks. So it's usually a combination of what the resident who's going to be moving into long term care needs. Often with some sort of crisis at this point around dementia or care needs and the family just not being able to do it anymore, which is not a failure on their part. It's just they can't do it anymore.
SAM PECK: First, families and residents need to know that they have something to contribute to the long term care home. They can be excellent allies. So, long-term care staff should talk to families and residents. Ask them for their input, and know how to have difficult conversations around end of life care or what palliative care means, what's culturally appropriate, and what sort of activities residents enjoy.
And then, on a higher level, what does the system need to put into place to respond to, not only residents today, but those in the future. So there's a big emphasis, for example, on Wi-Fi in long term care homes, because the residents of tomorrow will bring their devices with them. So, having your tablet, being able to watch Netflix in different languages... that's something we need to prepare for.
SAM PECK: Long term care home staff, I mean the paid caregivers as opposed to the essential family caregivers, really need an emphasis on good customer service and the fundamentals like communication, especially with people in distress.
They should know that transitioning to long term care is very challenging for folks. There's kind of a perfect storm of an emotional response. There's the anger for being in the position, grief knowing that this is likely the last place their person's going to live. Also, guilt around having to make that decision and when I say make the decisions, it's if they're the substitute decision-maker. So on behalf of their resident, you can consent. And sometimes it's a relief that there is now going to be someone else who's the 24/7 caregiver.
So staff need to be able to respond to and understand that perfect storm of emotions which can make people act in ways they wouldn't normally. Adding to that, conflict resolution skills, helping families get the support that they need inside or outside of the long term care home, and a lot of cultural competency to affirm the different cultural needs that residents and families have.
Ontario is a diverse place, and (LTC) staff need to be able to have respectful and affirming conversations about the role of someone's culture in their care and what that really means. Because at the end of the day, staff are there to provide high quality and appropriate care to residents, but they're also caring for the family as well. And they need to be able to do that well.
SAM PECK: Family councils are, I think, pretty special. In Ontario, they are defined and they're actually in the legislation governing long term care. So, any family member of a resident or any person of importance to a resident can form a family council. These groups of people get together on a regular basis to do peer support, help each other through the emotional experience of long term care, and provide information and affirmation. They do education, such as learning about issues that affect them and their loved ones, like how do menus get developed or what medications are available for Parkinson's, that sort of thing. And then help to be the bridge between the home leadership and families in the home.
So a communication role and to help solve issues or work on quality improvement needs because families bring to the table a wealth of experience and knowledge and lived volunteer professional experience that they can contribute to the long term care home to solve tricky issues or identify areas for improvement. And so every family member or a person of importance to a resident is a member of that group and is entitled to be an active member so they can attend meetings, you know, ask for something to be on the agenda, things like that.
Sam Peck is the executive director of Family Council of Ontario, which, in her own words, "It's an awesome charitable not-for-profit that helps families engage in the long term care sector as partners and advocates and allies."
"I love this work because I get to help groups of people achieve their potential. We help families to form effective family councils for advocacy, problem-solving, education, and fundamentally peer support. So we do a lot of consultation to help them through the long term care journey so that they can become good advocates and allies with the long term care home and their peers to support all of the residents in the long term care home" she says.
She explains that she is lucky to work with great partners that help her work have a bigger impact. "We're really lucky to work with partners like the Ontario Caregiver Organization, which works with caregivers in all settings. They do some referrals to us, we do to them as well. Also, the Ontario Long Term Care Association, Advantage Ontario, and the different home operators that we work with. They might refer a family to us who's looking for information and advice."
She adds that "a lot of what we do is someone saying either 'we want to start a family council because my home doesn't have one,' or 'we're having some troubles here.' Those are the two main areas. We work on building bridges, which is really focused on peer and mental health and emotional support, for those who have experienced racism within long term care, because it happens. And then also building capacity amongst caregivers and home staff to have better conversations and relationships through compassion, inquiry, and nonviolent communication. We have a few different things that we make available."
Sam concludes by saying that her work end goal is driving change within the over 600 long term care homes in Ontario. To learn more about how she and her team do this, watch or listen to the full interview by visiting our YouTube Channel or our Podcast. And to learn even more about her and her work, visit Family Councils Ontario.
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