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Nova Scotia woman living with dementia wants stigma to end

'I feel it's something that must be done' says Marilyn Taylor
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Marilyn Taylor has dementia, but is still very independent (Alzheimer's Society of Nova Scotia)

Dementia patients across the country are speaking out against stigma with a new campaign this month. 

People living with Alzheimer's disease or other forms of dementia are sharing their experiences living with the disease, using the slogan: "Yes. I live with dementia. Let me help you understand." 

The campaign kicked into high gear last Monday during Alzheimer's Awareness Month, and aims to change attitudes toward the disease through education and awareness. 

 "I feel its something that must be done. I feel I have a duty to try and end the stigma that hurts people, all the people who don't have a voice," said Marilyn Taylor, a Nova Scotian woman who is sharing her story.

Taylor has dementia. She lives alone, and is very independent. She relies on a group of friends for support when she needs it, and is an active member of the Alzheimer's Society of Nova Scotia.

She shares an experience of being stigmatised by a pharmacist while picking up her medication, who spoke to her as if she couldn't understand what they were saying. Taylor says this is a typical interaction for her, and many others living with dementia. 

"I think the number one stigma is when people think about dementia, their mind immediately goes to the end stages of dementia, but in reality this is a long disease—10 to 12 years—and people like Marilyn living in the early stages are still very independent," said Linda Bird, director of programs and services for the Alzheimer's Society of Nova Scotia. 

The Alzheimer's Society provides education, support and information for people living with the disease and their caretakers, as well as raises money for research. Today, more than half a million Canadians are living with dementia, including Alzheimer's disease. In Nova Scotia, that number is 17,000. 

Bird explains that the disease comes on gradually. Doctors and specialists try to rule out other things that are causing symptoms such as memory loss and confusion. 

"What we're talking about is changes that affect the brain that make it difficult to do day to day tasks, and so in the early stages, there could be all kinds of things contributing to someone's ability not to be able to do things," she said in an interview with NEWS 95.7's Sheldon MacLeod.

Some memory loss is also just a result of normal aging, Bird explains. She reminds people that each case of dementia is different, which is why it's so important for stigma to end.  

Research shows that stigma around dementia is growing.

In a survey commissioned by the Alzheimer Society last year, one in four Canadians said they would feel ashamed or embarrassed if they had dementia, while 1 in five admitted to using derogatory or stigmatising language about dementia. 

"I think there is more understanding but not enough," said Bird. "Part of this campaign is to hear the voices like Marilyn so that we can gain a better understanding about what its like to live with dementia and not to think about people in the end stages when they still have so much life to live."

"By listening to them and their experiences, we can really learn how we can better support someone like Marilyn to keep her as independent as possible as long as possible," said Bird. 




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