Calgarian Brian Mason lost his mother Sharon to Alzheimer’s disease seven years ago. On Sunday, Sharon’s family ran in her memory at Eau Claire Market in Calgary for the 28th annual Investors Group Alzheimer Walk and Run.
“It was really, really tough,” Mason said. “I think for everybody involved, including her, it was really really tough.”
“At the very end she didn’t remember anything,” he added. “She didn’t remember becoming Alzheimer’s-like but, for much of the period, she would have phases where she would realize exactly what was happening and that was terrifying for her.”
There is a new way of caring for dementia patients that aims at making the journey less frightening.
“Dementia care is one of the last bastions where we have a sector of society that is put right on the fringes as if they are non-people,” said Dr. David Sheard at an Edmonton conference on dementia care on Saturday. Sheard is a dementia care consultant and the CEO of Dementia Care Matters, a training provider based in the U.K. He suggests that caregivers learn “the language of dementia.”
“People with dementia can’t rely on facts and logic and reasoning and memory,” Sheard said. “They’ve become more heightened in their emotions and if you don’t respond to people’s emotions, that leads to behaviours and the wrong model has then been to approach people living with dementia as if they need behaviour management.”
Sheard cautions against taking what dementia patients say literally because he says that is what may lead to their frustration.
“As you experience dementia and it progresses, you start crossing the bridge into another reality,” Sheard said. “And in that reality, you might be 83 in a nightie in a care home, but where you actually believe you are 40 years old, in a red dress wearing stilettos.”
In the past, the medical community was trained to bring the patient back across the bridge to reality, according to Sheard. But he suggests if caregivers accept what their loved ones see as reality, it results in better outcomes for all.
“After you’ll be left with positive loving memories right to the end rather than a sense of a gaping hole in the last few years of her life,” said Sheard.
The Alzheimer’s Society of Calgary said support teams can create communication plans for families based on the individual.
“It’s different for everyone, so it’s good to have a customized plan for your own situation,” said Barb Ferguson, executive director of the Alzheimer Society of Calgary.
According the non-profit group, there are 17,000 people living with dementia in Calgary and the surrounding area with these numbers set to double over the next 15 years.
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