Ken and Mark

Passionate advocates and activists, Ken Walker and Mark Demers’s first dates were often at protests. Professionally Ken loves facilitating and before retirement worked to support people on welfare find opportunities; his husband Mark is a retired nurse. Both have been active in furthering LGBTQ2IA rights. Now they’re working to challenge the stigma associated with Alzheimer’s disease and other dementias.

Ken first connected to the Alzheimer Society as a volunteer, looking to find opportunities to use his facilitation skills meaningfully. He was a support group facilitator for several years before he began to experience issues with his memory. Between Ken’s experience with support groups and Mark’s medical background, they knew the right questions to ask – but it still took two years before they received an official diagnosis in 2015. Initially they were told Ken had mild cognitive impairment, but six months later he was diagnosed with young onset dementia. Ken was 58. The diagnosis brought a sense of relief after the uncertainty, a moment of clarity before a period of grief. They were lucky to have a community of friends around them for support. Ken eventually joined an Alzheimer Society support group – getting to experience it from the other side – and Mark took part in education for caregivers.

Ken and Mark say they don’t feel they’ve experienced the effects of stigma directly. However, they suspect there are people who have stopped reaching out because of it – out of fear or uncertainty, or because they are unsure what to say or how to behave. “Part of my dance is making it normal,” Ken says. “There are a lot of people who hide at home when they’re diagnosed, who don’t share their story. If I have dementia, I’m going to be open about it – when I’m out talking to someone and mix up my words, I’ll just explain that I have dementia.”

Mark says that in his experience, people often try to disguise their symptoms because of stigma. “They waste a lot of bandwidth trying to disguise that they have dementia. Something we know from being gay is that shame can undermine relationships.”

Ken and Mark think that people’s attitudes toward dementia are changing, but it’s not enough yet. “I want people to understand that life can still be full when you’re living with dementia,” Ken says. “It takes work – I have had to learn about my boundaries and focus on the things I care about.”