It's a typical day on the Specialized Dementia Unit (SDU). One healthcare provider helps a patient build endurance by walking slow laps around the floor; another turns up the heat in a patient's shower room so the air doesn't feel so startling when he emerges from the warm water; and two more team members are problem solving around a patient's pain management issues.
It may sound like a glimpse into an acute-care floor, or even a nursing home. But the SDU is part of Toronto Rehab, where, for the past three decades, patients with advanced dementia have been admitted because the severity of their illness has progressed to a point where it cannot be managed in a long-term care setting.
Until recently, the unit was called the Geriatric Psychiatry Unit. But according to Dr. Ron Keren, Medical Director of Toronto Rehab's Geriatric Rehab Program, in an effort to reflect the team's expertise and future focus, it has been given a new name.
Along with a new name, the SDU is focused on taking a "person-centred" approach to care, and making the unit more of a living lab to do research on innovating around non-pharmacological approaches to improving the quality and safety of care for all patients with dementia.
And, as the SDU continues to grow as a living lab, the goal is to draw on a preliminary project that was completed with the Ontario College of Art and Design (OCAD), which identified door design, lighting, and sound-proofing changes that may enhance how patients interact with the environment on the unit.
"The dementia and design project is meant to work hand-in-hand with research, so as we change aspects of the design, we evaluate impact," says Dr. Andrea Iaboni, a SDU scientist and psychiatrist.
As an example, an OCAD student measured the sound levels on the SDU and found that they were far above the recommended maximum for a hospital. That led researchers to contemplate if acoustical designs could be made that would improve the quality of a patient's experience in the space and, if a solution were found, expand it to nursing homes to improve the comfort of residents.
That's the goal of the living lab concept on the SDU – developing simple design changes that can be implemented in other environments, without a big investment.
To date, OCAD has developed a a number of preliminary ideas, and the team is working toward finding the funding to start implementing some of the suggestions.
"The vision of the SDU growing as a living lab needs to become a reality, so that we can continue to advance and provide specialized care to a very specialized population," says Patricia Mlekuz, Senior Clinical Director of Toronto Rehab Geriatric Program.
While efforts to expand the living lab concept continue, the new strategy of care on the SDU represents a major cultural shift in care for patients with advanced dementia – a signal of an end stage of life.
"Thirty years ago, we saw the patient as the problem and the caregiver as the sufferer," Dr. Keren says. "Now we see the patient as the sufferer.
"We've transitioned from 'we need to fix the patient' to 'we need to understand and support the patient, and the people around them will be better off, too.'"
On the SDU, the goal of the team is to identify the underlying source of a patient's responsive behaviours, develop a care plan to address them, and optimize the patient's safe integration back to their community.
Prior to discharge, the team will hold a care conference with family and caregivers from the patient's community, to review care tips, and transfer learnings.
"Whatever we do with a patient must be transferrable," Dr. Keren says.
"If you can't replicate what we're doing here, it'll become a problem upon discharge."
Revolutionizing end of life care
One example of the deep dive the team takes is considering the role that pain can play.
Pain can be difficult to detect in patients with dementia, because they can't necessarily articulate it. Instead, a patient may be agitated, aggressive, or irritable.
"Instead of saying, 'we need to treat the irritability or aggression,' we now say 'maybe it's pain that is driving this,'" explains Dr. Keren.
When pain does play a role, the team advocates for minimizing unnecessary suffering caused by aggressive treatment.
"Unless you spend time with patients and families, explaining that active treatment of severe medical conditions is often futile and brings on even more suffering, patients are likely to be transferred to acute care, with no clear benefit at all," says Dr. Keren.
Instead, the team focuses on helping patients and their families develop advanced care plans, which they take with them upon discharge. These plans ensure that the care a patient receives in the community is reflective of his or her values and desires.
"We've really helped families acknowledge that their loved one is at an end stage of life, where it's about making them comfortable and respecting them.
"This focus on developing advance care plans has revolutionized care on the unit."
Championing care conferences
While the team will use care conferences as an opportunity to share advance care plans, they also use this time to review medication changes, medical issues, and behavior strategies that are working well.
The key is to keep the strategies simple.
After all, as Cecelia Marshall, a social worker on the SDU explains, along with being transferrable, they need to be sustainable.
"We put a lot of consideration into what can be managed, going forward," she says.
"If we create a plan that the home can't use, the patient either won't be accepted back, or will be re-admitted to our unit in the future."
Sustainable activities may include setting a patient up with an iPod, so he can feel less restless during downtime; offering a midday nap, to help combat his late-afternoon aggression caused by fatigue; asking him to sort a cutlery tray or fold a pile face cloths – a repetitive, calming task that can ease anxiety or agitation.
"Sometimes a home will say to us, 'this person demands a lot of attention – we can't give her what she needs,'" says Cecelia.
"What we're able to uncover is that she starts to feel anxious at certain times of the day, and an act as simple as pulling her wheelchair up to the care station, while a nurse focuses on charting, is all the attention she needs to feel emotionally supported and physically connected."
A living lab
As the SDU continues to influence care outside the organization, it has also become an academic hub for developing evidence-based practices that enhance the day-to-day lives of patients and caregivers.
"We have a lot to share with other organizations, where they don't have the same concentration of expertise, participants, or the infrastructure of Toronto Rehab," says Dr. Iaboni.
"We're not just saying, 'we think we do things better here,' but 'here are the numbers that show how this approach has been helpful for our patients.'"
To that end, at any given time, multiple studies are taking place on the unit.
One example is the iPod study, which is examining the impact of customized versus generalized music playlists on people's responsive behaviours, when receiving personal care such as bathing and toileting.
"These tasks are particularly challenging for our patients, in terms of feeling safe," says Dr. Iaboni. "It's exposing and affects people's dignity."
Other studies are harnessing the power of Artificial Intelligence (AI), to detect when someone is physically or emotionally declining.
"By incorporating technology into the environment, we can become an instrumented unit for research – a living lab – where we not only conduct our own studies, but evaluate innovations from outside, as well," says Dr. Iaboni.
A high-functioning team
The evolution of the unit has not only enhanced care, but the staff experience, as well.
"Involving team members in our research, and allowing them to ask interesting questions about how we can better care for our patients is very stimulating," says Dr. Iaboni.
"It adds a whole new dimension to their work experience, and has enriched the culture on our unit."
Dr. Keren agrees, citing the tremendous respect he observes for what all professions bring to the table.
"Sitting in that room together, while everyone brings their own lens to how they see the patient, in an endeavor to improve the quality of life in people who can otherwise be neglected, is truly special," he says.
"Here on the SDU, we have a team who regards the value of our patients' lives in a way that's just incredible."