BY MARK WEBER
There are new forms of assisting those with dementia that are showing promising results, attendees of the fourth annual Early Onset Dementia Alberta (EODA) conference heard this past weekend in Red Deer.
Highlights includes talks from keynote speaker Peter Priednieks of Dementia Care Matters, which is based in England.
Last Friday, he spoke about the ‘Butterfly approach’ – which is described as a holistic, person-centred approach to enhancing the culture of care by improving the ‘lived experience’ of the person with dementia.
Lived experience, in turn, has been defined as the minute-by-minute experience of the person with dementia in the reality they presently live in.
Officials with Dementia Care Matters have developed a network of more than 100 Butterfly Care Home projects in the U.K., Ireland, Canada, United States and Australia.
“That’s really what we are trying to do – on a larger scale – to incorporate the essence of being human,” he said of the Butterfly Care Home projects, where the setting is home-like rather than institutional.
Staff also don’t wear conventional uniforms, but dress casually and interact with residents ‘where they are’. That is, they don’t correct them when they, for example, think they are living decades in the past or are asking for the whereabouts of a deceased relative, for example. They simply ‘enter into’ that person’s world, and carry on conversations or interactions that fit with the residents’ perception of reality.
“We’ve given this a lot of thought and within the context of a care home, this is what I’d like to show you is our view of a care home – capturing that feeling of ‘home’. That includes no barriers – no ‘us’ and ‘them’. Uniforms have got to go. We cannot create the feeling of home if you are wearing a uniform,” he explained.
It’s also about offering residents a busy, active environment to be a part of.
Strict timelines are also not included with the Butterfly approach. “You can have breakfast whenever you want to have breakfast. In a Butterfly home, sometimes at lunch time there are people sat alongside those having their lunch who are still having their breakfast.”
Priednieks also talked about, as mentioned, constant engagement with residents. “Come look at the sunset out the window, come see this bird on the fence over there.”
He also pointed out that some have said they had been in a Butterfly home, and they couldn’t tell who were the staff and who were the residents. Priednieks said that’s pretty much the point.
He mentioned that the team at Dementia Care Matters have conducted more than 700 qualitative observations across the U.K., Ireland, Canada and Australia into long-term care.
They were looking for, among other things, positive social interaction. Sadly, they found that often interaction doesn’t go beyond the duties of care. This is essentially called neutral care – the basics are provided, but little else.
Then there is ‘controlling care’ – where say a person asks for a piece of toast, for example.
They are politely told the kitchen is shut down for the night and they’ll just have to do without. “It can be said in a soft soothing tone, but it’s saying, ‘Yes, this is your own home but I’ll decide whether you can have a piece of toast.” Sometimes, staff also tend to talk about clients or over them as though they aren’t even there.
Meanwhile, dementia is more common in people over the age of 65 but it can also affect younger people.
Early onset of the disease can begin as young as the 30s, 40s or 50s. To that end, EODA provides a voice for those families affected by dementia, organizers say.
EODA is therefore committed to building dementia awareness and advocating for persons with dementia, care partners and families.
The diagnosis can be devastating, as often they lose jobs, their driver’s license and their independence, notes the web site.
Currently, the four areas of concern EODA is focused on include home care, the lack of services/programming, long-term care (the majority of long-term care facilities are not in the position to deal with younger people who have dementia and are still physically very active) and diagnoses and medical support.
Check out www.EODAF.ca.