Vancouver couple Ken Walker and Mark Demers are fighting discriminatory beliefs around dementia with openness, and in the process, are entirely transparent about who they are.
From an early age, Ken Walker knew he was never going to hide.
It was Walker’s refusal to cover up his identity as a gay man, and his desire to advance the rights of the LGBTQ2IA community, that led to his activism in Vancouver in the late 1980s.
Walker and his husband, Mark Demers, joined in boycotts of homophobic businesses, participated in demonstrations and were active in advocacy groups that challenged the marginalization of the LGBTQ2IA community, like Queer Nation. Regardless of the form their activism took, they always challenged injustice the same way: by being open with those who held discriminatory beliefs and by being themselves.
“There was a lot of stigma around being gay, and HIV became a focal point for that in the 1980s. We believed that people would be more accepting of gay people if they actually knew them personally,” says Demers.
When Walker was diagnosed with young-onset Alzheimer’s in 2015 at 58 years old, the couple decided to apply the strategies they used in their LGBTQ2IA advocacy to also “out” dementia. That is, Walker and Demers were committed from the beginning to be open about Walker’s diagnosis.
“[Living with] dementia wasn’t a discussion happening in [the LGBTQ2IA] community at the time of Ken’s diagnosis. So, we had to initiate that,” explains Demers. “There are people who don’t know how to talk to Ken because they don’t have any experience with dementia — and that is the point of being open.
Photo Courtesy Lindsay Elliot
They will see a member of their community with Alzheimer’s go through the whole process, and they will be better able to face it in their own lives if they encounter it.”
Demers and Walker hope their openness also fights the stigma surrounding a dementia diagnosis and the misunderstandings around who dementia affects.
They discuss Walker’s diagnosis with national media outlets, raising awareness that life with dementia can mean a life well-lived.
They’re also spokespeople for the Alzheimer Society of British Columbia, and Walker is part of the BC Leadership Group of People Living with Dementia. Before COVID-19, they participated in the Alzheimer Society of B.C.’s annual luncheon at the Legislative Assembly of British Columbia, sharing their story of life with dementia for BC’s MLAs at the March 2020 event.
Simply, they are working to prove that dementia doesn’t discriminate based on gender or sexual orientation, and that life with young-onset Alzheimer’s doesn’t look the same for everyone. For Walker and Demers specifically, life with dementia hasn’t put a stop to a lifelong passion for advocacy and speaking up.
“It’s important to set examples when we can,” says Walker.
And what do they do if someone doesn’t understand dementia or feels uncomfortable?
“Just be kind,” says Walker. “Have conversations. Talk about how we are all different in some ways.”
How to Have an Open Conversation About Dementia
Photo Courtesy Canva
Ken Walker and Mark Demers share the three approaches they use that enable genuine conversations about dementia.
1. DON’T HIDE WHO YOU ARE. Demers explains that Walker’s approach is to publicly be himself — always. “I think that not being open destroys people’s lives,” says Demers, adding that shame can be debilitating. “Ken’s approach is to publicly be himself so that he can be a living contradiction to others’ [prejudicial] beliefs.”
2. ENCOURAGE LAUGHTER. Demers uses humour to help others feel free to ask questions. “If we’re having a conversation with someone and Ken says something that really doesn’t make sense [because of his young-onset Alzheimer’s], we just joke about it and don’t take it too seriously,” says Demers. “That way people realize it’s not taboo to talk about.”
3. MAKE CONNECTIONS. Before COVID-19, Demers and Walker used the app Signup Zone, where friends and neighbours booked a time to visit and connect with them. “We would send out a calendar on Signup Zone for our friends and neighbours to come visit Ken,” explains Demers. “Anyone who gets our email can sign up for a time to visit. By doing that, we are having an ongoing conversation with all of our friends about what’s happening with Ken.”