Speak Openly and Challenge Stigma
Roger Marple is living with dementia, and he wants to talk about it
These days, Roger Marple is more than willing to speak openly about his dementia diagnosis. He’s matter-of-fact when he describes his boss’s confusion about his deteriorating performance at work, and candid about how he finally went to a neurologist in 2015 to be told he had “Alzheimer’s with vascular components.”
He’s also open about his initial feelings four years ago.
“I felt shame at first — and for quite a while,” says Marple. “I was in a pretty dark place when I was first diagnosed, and I did feel uncomfortable with the public’s perceptions [of me]. And as time went on, I saw more examples of stigma for individuals living with dementia.”
According to a survey conducted by the Alzheimer Society of Canada in November 2017, Canadians recognize that individuals living with dementia are subjected to various forms of stigma and experience it far more than Canadians living with other physical health challenges. The survey found that Canadians believe stigma can result in individuals with dementia being frequently taken advantage of, socially rejected or avoided, ignored or dismissed. Yet despite this recognition, more than 50 per cent of Canadians surveyed admitted to using stigmatizing language, such as telling jokes about dementia.
Marple has seen first-hand how dementia stigma can lead to problems like social isolation, depression, shame and embarrassment. He’s working hard to change that.
Recently, Marple started wearing a blue tie dotted with forget-me-not flowers — and encouraging others to wear one, too. These forget-me-not ties (and scarves for women) — a symbol meant to reduce dementia stigma and encourage positive conversation — are originally from the Alzheimer Society Lanark Leeds Grenville in Ontario. Marple brought the ties to Alberta. He meets with politicians and prominent researchers to talk about dementia and dementia stigma, invites them to wear a tie and snaps a photo. Marple then shares it on his Twitter feed to further awareness.
Marple also sits on the board of directors for the Alzheimer Society of Alberta and Northwest Territories, is on the advisory board for the Alzheimer Society of Canada and frequently presents on the topic of stigma. Marple hopes to encourage conversation, remove the negativity that clouds most dementia conversations and educate the public about what living with
dementia is really like.
“If people respectfully challenge stigma, that is how we are going to start to change stigmatizing perceptions of individuals with dementia,” says Marple. “My hope is that by speaking candidly, frankly and openly, other people will start feeling more comfortable speaking up.” [ ]