Caregiver support, training at heart of initiative

Adela Talbot // Western NewsHealth Studies professor Marie Savundranayagam recently received a grant from the Centre for Aging and Brain Health Innovation to assess the effectiveness of an innovative training and communications tool for personal-support workers providing homecare to individuals living with dementia.

Marie Savundranayagam wants to dispel the notion that ‘person-centered care’ is merely a patient-focused approach. In health-care settings, she stressed, both the patient and their caregiver must figure into the equation.

And it’s this patient-caregiver relationship the Health Studies professor hopes to bolster with an innovative training and communications tool tailored for personal-support workers providing homecare to individuals living with dementia.

The tool is called Be EPIC because it focuses on assessing the (E)nvironment, using (P)erson-centered communication, focusing on client relationships ([I] matter too) and incorporating the (C)lient’s abilities, life history and preferences during routine care. Savundranayagam recently received a grant from the Centre for Aging and Brain Health Innovation to assess the effectiveness of this initiative.

“Be EPIC is a person-centred communication intervention I created for frontline staff – we call them ‘personal-support workers’ – who work in homecare and who work with clients with dementia,” she explained.

“I chose homecare staff because they have the least support. When you work in a nursing home environment, you can problem-solve with your peers about your resident, but when you’re at home, you have no one to problem-solve with. You’re on your own.”

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, and avoiding unnecessary hospitalizations and premature relocation into nursing homes, are critical health-system priorities, which are also part of Ontario’s new Dementia Strategy, Savundranayagam explained.

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 and lead to patients becoming agitated or resisting care. These behaviours are distressing for personal-support workers and family caregivers and can increase the likelihood of moving the person with dementia into institutional care, which has emotional and financial consequences for all involved.

“Be EPIC is a six-week program where we train personal-support workers on how to be person-centred in their communication and to use strategies when they are helping with activities of daily living and when engaging the client in meaningful activities,” Savundranayagam said.

According to the Alzheimer’s Society, person-centred care involves tailoring a person’s care to their interests, abilities, history and personality. This helps them to take part in the things they enjoy and can be an effective way of preventing and managing behavioural and psychological symptoms of dementia.

“Sometimes the staff is just there for an hour or two and they will be really focused on getting stuff done. But sometimes they have eight-hour shifts and have a lot of time to really get to know the client,” Savundranayagam continued. “We train them to use person-centred communication to engage in activities that are meaningful to the client, to deal with responsive behaviours and how to help manage someone when they are in a delirious state.”

Be EPIC is comprised of simulated home-care settings for personal-support workers, as well as supervised interaction and work with actual clients at McCormick Dementia Services in London. Savundranayagam hopes to record interactions in home-care settings in order to look at how they affect not only the individual with dementia and the personal-support workers, but also family and caregivers in the home.

“We’re looking to see if the family caregiver experiences less distress. Do they have more confidence in the care their relative is getting? At the end of this, we’re really hoping home-care interactions are improved. If you have greater quality of care, you’re more likely to have people stay at home longer and it could prevent premature relocation to more formal settings, which is disruptive to the family and the client. And it is quite expensive,” she added.

“This is evidence-based and theoretically grounded. We need to step back and ask if going to a lecture is the best way to train the behaviour, attitude and communication skills of personal-support workers. I don’t think so. This approach is purposefully created and the process to implement something like this is based on adult-learning theory and how we retain information and apply it. This has an impact on real people.”