VIDEO: Speaking out about dementia

Campaign hopes to end stigma around dementia

A recent B.C.-wide campaign is hoping to end the stigma and increase the awareness around dementia in Sooke and throughout Greater Victoria.

The campaign called, I Live With Dementia, Let Me Help You Understand, began this month on Jan. 8, and will run over the course of three years.

Dementia is a disease that affects the brain, causing memory loss, impaired judgment, and changes in behaviour and personality.

“Everyone is affected differently, but in our society as soon as we hear the word dementia or Alzheimer’s, we tend to make an assumption that the person diagnosed is going to be what we see in the movies, in the later stages of the disease,”said Meriel Randerson, support and education coordinator for the Alzheimer Society of B.C.

“With that assumption, all of a sudden people start treating that person differently or excluding them, but there’s so much more to a person than the disease itself.”

She said the Alzheimer Society would like to look at creating “dementia friendly” communities where people can identify themselves as dementia friends, and understand and support each other.

“We need to end the stigma around dementia so that people with the disease can live good, meaningful lives and stay involved in their community. We would’t be embarrassed to talk about kidney disease or a heart condition, so it shouldn’t be any different with dementia as it’s just a different organ in the body that’s sick,” said Randerson.

“A big part of the message we want to get out, especially to a small town like Sooke where people can be very private, is that dementia is not something to be embarrassed about.”

The Alzheimer Society of B.C. has paired up with people who are living with dementia, to give them a voice and help give people a better understanding of the disorder.

One example is Cindy Player from Victoria, a spokesperson for the campaign who was diagnosed with dementia in 2016, says she has experienced stigma first-hand from people as she has battled mental-illness throughout her life.

“I think it would be easy to get bogged down and feel negative about it when you have dementia, but I try to take each day as it comes and try not to worry,” said Player.

Player said she wanted to get involved in the campaign because the affects from the stigma around a mental illness can be more harmful than the actual illness.

She explained that when she needed time off work while struggling with bipolar disorder, no one tried to contact her, but when she was diagnosed with cancer later in life, she had tons of people reaching out to her and offering support.

“The contrast in reactions was so strong for me, from struggling with mental illness compared to a different kind of illness,” she said.“I think with dementia there are many of the same characteristics, people are afraid of it, so I think it’s really important to talk about it and for people to learn enough to let go of some of the stigmas.”

Players added that she believes stigma’s are just created from stereotypes and misinformation, and hopes that with multiple people living with dementia speaking up throughout the campaign, some of the false assumptions will diminish.

“I feel more myself when I’m open about living with dementia,” said Player. “There’s risks for me being open, but I think in the end it feels better to be honest about my experiences.”

The Alzheimer Society of B.C. will be hosting a session in Sooke called Getting to Know Dementia on Feb. 20 from 10 a.m. until noon at SEAPARC. To register contact SEAPARC at 250-642-8000.

To learn more about the content of the session, contact the Alzheimer Society of B.C. at 250-382-2052.

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