As a dementia caregiver, you may feel caught between a rock and a hard place — struggling to tend to your parent or senior loved one’s escalating needs but feeling uneasy about placing them in long-term care (LTC). You might assume that your only choice is a hospital-like setting — but you’d be wrong. Some LTC providers in Canada have replaced the medical model with person-centred care, which offers people with dementia tailored support in a more home-like environment.
Read more about these Canadian long-term care homes and how they are revolutionizing memory care across the country.
Unlike traditional LTC homes, those that embrace person-centred care look at the world from the perspective of someone living with dementia. “It’s about understanding their habits, their personality, their preferences, their routines and what triggers them to be either happy or unhappy,” explains Mary Schulz, the Alzheimer Society of Canada’s education director.
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“It’s about really making the social and the physical environment as supportive to the person as possible.”
According to the Society’s PC P.E.A.R.L.S., Seven Key Elements of Tailored Care report, long-term care homes that provide person-centred care ask a family to share their experience of the person’s personality, preferences and values.
Staff can provide more effective care when they receive guidance from families, who know their loved one better than anyone else, says Schulz.
“The idea is that both parties come together and say we’re both here to try to make ‘Joe’s’ life the best it can be and we need each other in order to do that.”
The report also notes that staff at person-centred care homes “respect personal preferences by letting residents sleep in and by providing a light breakfast when they are ready.” As Schulz points out, people with dementia tend to be less agitated or anxious if their schedules are in line with their usual routines.
“It certainly is not going to start off a good day if I’m being awakened and yanked out of bed before I’m ready,” says Schulz. If you abruptly awaken a person with dementia, who may have limited coping strategies, they might respond by resisting getting dressed or by striking out at staff, she adds.
Offering meaningful choices to memory care residents with dementia is another principle of person-centred care.
Having a bath or getting dressed “should not be the highlight of the day” for a resident with dementia, says Schulz. “If those things become the priority for the day, it means that our days can become pretty empty,” she adds. “The good day comes from doing things or being with people that we enjoy. So we get dressed and have a bath in order that we can go and sit by the window and watch the birds at the bird feeder or… listen to some music or sing in a choir.”
Another principle of person-centred care: Recognizing that the interests of people with dementia will evolve over time. “When we care for people with dementia, we start with what we know, but then we keep checking — is this still true?” says Schulz.
For example, she says, people who never enjoyed cards might develop such an interest later in life.
“They may not be able to follow the rules of a card game, but they may very well enjoy looking at the colors or the texture or playing with them… or putting them in piles or whatever,” she says.
Although the research is not iron-clad, there’s growing evidence that person-centered care can benefit people with dementia, says Schulz. Models of person-centred care include:
As well, you may have read about the Butterfly Household Model of Care, which was initiated by Dementia Care Matters in the UK and has spread to Alberta and Ontario. (Check out this in-depth profile of Malton Village’s Redstone Unit in Peel Region, the site of a year-long Butterfly pilot program.)
The Butterfly Method “certainly seems to be on the right track,” says Schulz, adding that the Society doesn’t endorse any model of person-centred care. We don’t get “too hung up” about terms, as all these models operate under the premise that people living with dementia should be at the heart of the care.
Schulz advises those looking for long-term care to read the Alzheimer Society of Canada’s PC P.E.A.R.L.S. report and then to “overlay them [the elements of care] on whatever model you’re looking at, the Butterfly [Method] or Eden Alternative, or whatever you want. [If you] can, go check, check, check… chances are you’ve got a model that’s pretty darn person-centred.”
Do you, a parent or senior loved one reside in Canadian long-term care? Have you experienced this person-centred care and has it had an impact on your or a loved one’s life? We’d like to hear your stories in the comments below.