January marks Alzheimer Awareness Month, but of course building awareness and reaching out to help those affected is a year-long goal of the Alzheimer Society of Canada.
“It’s all year long for sure, but in January we really try to shine a spotlight on dementia awareness,” said Michele Mulder, CEO of the Alzheimer Society of Alberta and the Northwest Territories.
Alzheimer’s disease is irreversible and destroys brain cells, causing thinking ability and memory to deteriorate, according to the Alzheimer Society of Canada.
Alzheimer’s disease is the most common form of dementia.
Other types include young onset dementia, vascular dementia, mixed dementia, frontotemporal dementia and Lewy body dementia.
“This is also the third year of what’s been a three-year campaign to reduce stigma and discrimination that surrounds Alzheimer disease and other forms of dementia,” added Mulder. “Our campaign is all about educating the public and actually challenging people to learn more about what it’s like to live with dementia. There is still an awful lot of stigma and discrimination that surrounds the condition and the diagnosis.”
Mulder said there are many stories of folks who say after they were diagnosed and told their others about the condition, some friends chose sadly to distance themselves.
“At the beginning of our campaign, there was also a cross-Canada survey done, and it told us what we pretty much already knew – that some people feel ashamed or embarrassed with a dementia diagnosis. They wouldn’t share it; they would hide it,” she explained.
Some surveyed admitted they have even made jokes about the condition.
“Armed with that knowledge, we embarked on this campaign and when it winds up we are going to do another poll. We hope to have the evidence that we have both raised awareness and that we have started to change people’s attitudes. Right now, my gut is telling me that we have moved the needle.”
Mulder said there is much to check out on the web site ilivewithdementia.ca. “We just keep saying, read these people’s stories, and you will understand a little bit more what it’s like to live with this – either from a care perspective or from being the person with the diagnosis,” she explained.
It is also, as pointed out, not a normal part of aging.
As Mulder pointed out, that’s one of the misconceptions about it.
“In fact, there is a growing number of people who are being diagnosed earlier and earlier,” she said. “It’s not an ‘old persons’ disease and it’s not a natural part of aging at all.
“Another misconception is that once you have a diagnosis of dementia, you have nothing left to offer. But we have all kinds of examples of people living with dementia who have so much to offer,” she said.
“They talk about their coping mechanisms, they encourage others to embrace life, they go travelling – it’s such a huge misconception that once the doctor says, ‘I’m sorry, you have Alzheimer’s disease’ that it’s over. You can ‘live well’ for years with it. But it is a terminal illness.”
But as one of the campaign ambassadors has pointed out, aren’t we all going to be terminal at some point? she added.
Mulder also encourages people to perhaps challenge others when they hear a joke about dementia being told.
“Would you make a joke about someone with ALS? Would you make fun of someone with a cancer diagnosis? No.
“What we also say to people when we are out doing presentations is with learning and understanding comes empathy and compassion. Everyone wants to be treated with dignity and respect at any stage.
“Unfortunately, many people who hear a diagnosis of dementia and who don’t have any experience with it – they go right to the ‘end of life’, picturing someone in a care facility who is unable to make decisions or to care for themselves. But it’s not like that.
“There can be lots of living to do. Also, people without dementia can learn from people with dementia. It’s incredible.”