Published: Apr. 24, 2017
“We all want to help make people comfortable at the end of their life. It’s the humane thing to do. But how do you make it happen especially for those who have advanced dementia?” This question is at the heart of Dr. Sharon Kaasalainen’s research, which is devoted to improving the quality of life and dying for people living in long term care (LTC) homes.
Kaasalainen is an Associate Professor in McMaster’s School of Nursing. Her project, “Strengthening a Palliative Approach to Long Term Care” (or SPA-LTC for short), funded by CIHR, involves long term care homes in Ontario, Manitoba, Saskatchewan, and Alberta.
The innovative project is “empowering front-line staff, families and residents, and leveraging community resources to help support LTC homes in their efforts,” says Kaasalainen.
Kaasalainen’s work is based on a philosophy of care called the palliative approach. “We are trying to get communication, symptom management and advanced care planning happening earlier on, rather than having to make difficult decisions with families when they are not prepared for them and often in crisis mode.”
SPA-LTC involves several components including a tool that staff can use to help identify residents nearing the end of life or when there’s been significant decline. This triggers a Family Care Conference. Staff talk to the resident and/or family about goals of care, symptom management issue, and develop a plan of care together. “Staff ask about the kinds of things the resident normally enjoys. Is it music or massage therapy? What are their spiritual beliefs that they would like supported? Do they want to go to the hospital or stay in the long term care home?”
The team tries to “make changes user-friendly and less onerous for staff. We can adapt it to some extent based on staff preferences and their current demands. The goal is to work with them to make sure the program is sustainable over time so when the research project is over, the program continues.”
Partnerships are key. “We have an advisory board of thirty people from across the country. We’re all working together, trying to build on one another’s work rather than duplicate it. We have been working closely with Extendicare Canada as they see the SPA-LTC program supporting their vision for quality care in their homes. Shalom Village is another key site and has become our model home to showcase our research, as they are committed to providing the best possible care they can to residents and their family members. We work closely together to develop and implement research that aligns with their goals and vision while figuring out ways to make it happen.”
Kaasalainen’s other current research program, The Namaste Care Project, aims to help patients with advanced dementia and their families. Dementia has different stages with different care needs across each stage. “I saw this when I worked in long term care as a nurse. In the middle stages, you can witness verbal outbursts and physical aggression. That demanded a lot of our attention. Our goal was to keep them safe and try to calm them so their behaviours settled down. All our attention was going to that cohort. But residents who had advanced dementia were often just left in bed. I remember going in and turning them every two hours and toileting them, getting them up to feed, really just focusing on the tasks at hand. And then often they would die alone in their room. I always felt bad about that,” Kaasalainen says.
With the Namaste Project, “We get residents out of their rooms for two hours in the morning and two hours in the evening. We bring them to the Namaste room to be with others, and it’s all high sensory activities, like touch, nice music, massages, engaging and soothing conversation. It’s all very peaceful and dignified.”
The researchers are currently working with Shalom Village and St. Peter’s Residence for a 4-year study. Kaasalainen is wrapping up a smaller study of Namaste care that was funded by the Alzheimer’s Society of Canada before starting this new larger one funded by CIHR. “Even with our sample of thirty residents, we are seeing significant reductions in pain. Families are stating their spouses are more alert than they’ve seen them in years. And we’re seeing lots of the behaviour, like yelling and agitation, decreasing too. One of the studies done in the UK showed that antipsychotic medication and costs decreased because the behaviours were decreasing.”
“There are times when people become too frail or it’s unsafe for them to live at home or their family can no longer manage it so long term care is needed at that point,” Kaasalainen says. “And we need to give them the best care we can there, just as we would like to see for our own parents.”
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