Delivering proper care to thousands living with dementia means personal-support workers must understand more than patients’ medical histories – they need to know the people behind them. Ongoing research from Health Studies professor Marie Savundranayagam hopes to provide one avenue toward that goal.
“The focus is to train front-line staff to be person-centered in their communication, to know their client’s life history, their social history, who they like, who they don’t like, what their food preferences are – and then incorporate that information in the care,” said Savundranayagam, who worked on the project along with colleagues at the Sam Katz Community Health and Aging Research Unit at Western.
“Medical history is clearly important. But it needs to go beyond that, to really know what makes this person tick.”
This patient-caregiver relationship is bolstered through what Savundranayagam calls Be EPIC, a training program to provide personal-support workers with the skills necessary to better deal with people living with dementia.
Earlier funding from the Centre for Aging and Brain Health Innovation to assess the initiative has since been enhanced with a $418,717 grant, over two years, from the Future Skills Centre to scale-up the training program. Now, 48 personal-support workers in both an urban (London) and rural (Northumberland County) settings are part of initiative.
The ongoing training consists of a two-day dementia-specific skill development program and will now include personal-support workers in long-term care, as well as home care.
The care of persons with dementia is considered an urgent public-health issue as nearly 30 per cent of older Canadians will have dementia by 2031. In 2008, 55 per cent of Canadians with dementia lived at home – a number projected to increase to 62 per cent by 2038.
Keeping persons with dementia at home are critical health-system priorities, which are also part of Ontario’s new Dementia Strategy, Savundranayagam stressed.
Personal-support workers are integral in meeting these priorities by providing assistance with personal care, chores and recreation. As it stands, their formal training doesn’t sufficiently address dementia-related communication and behavioural problems. Communication with persons with dementia can be task-focused, overly directive and patronizing, she added.
“One thing that makes the care difficult is responsive behaviour associated with dementia, so getting aggressive or resisting care,” Savundranayagam continued. “When staff use person-centered communication, they get more cooperative responses from the person with dementia. They share more and go along with the care more – much more interaction and less negative care.
Karen Johnson, Director of McCormick Dementia Services in London, has been partnering with Western on this initiative. In her years in the health-care industry, training in this area has continually fallen short.
Be EPIC, she believes, seems to be hitting the mark.
“I’ve heard stories of personal-support workers not being well equipped and not providing the level of service that should be happening. Whatever we can do to make the experience better for clients and the workers, because they are so vulnerable and don’t often have the tools, is wonderful,” said Johnson.
Personal-support workers need to look for cues in the environment, she stressed. But the strain to get tasks done quickly always weighs in the bacd of the mind.
“You need to slow down and develop relationships; you’ll save time in the end. It’s the basics and often the basics are missing,” said Johnson, adding the feedback from her personal-support worker staff “has made a world of difference for them.
“One worker was legitimately afraid to go into to the home to give her client a bath; it was always a battle. But a couple weeks after the training she came back and had this huge grin on her face and told me, ‘I did the bath and it wasn’t a problem.’ All she did was use the strategies and build the relationship. She left the home feeling great about herself.”
Along with the in-person training, Savundranayagam is also collaborating with a technology company to create a virtual-reality version of Be EPIC to offer the training to personal-support workers nationally, and even globally.
Savundranayagam said personal-support workers have told her the training has had an impact on how they do their jobs and that they are looking forward to trying out these strategies with their more challenging clients.
“It’s far more meaningful; it’s as if we gave them permission to be more engaged beyond just a job,” she said. “What is most moving about the whole process is, when we implement the intervention and see the impact it has on the personal-support workers, it gives so much more meaning to the work they do.
“We are having an impact on real people. It’s being able to see the magic behind the work we do. It’s exciting to take what we’re doing in the lab and put it into practice.”