KITCHENER — A few years ago, as he stood at the checkout of a local grocery store with his debit card, Gerard Laderoute realized he had completely forgotten his PIN.
“I tried different combinations and nothing worked,” says Laderoute, 74. The sales clerk waited impatiently on the other side of the counter, while frustrated shoppers gathered behind him. Laderoute’s wife, Monique, offered to lend a hand, but even that gesture of support couldn’t counter his growing feelings of being judged. Overwhelmed, he abandoned the groceries and fled — to the bank to get a new PIN.
Laderoute was diagnosed with vascular dementia shortly after his retirement eight years ago from a 40-year career with a local meat processor. He’s one of nearly 230,000 people in Ontario living with the condition, a number that’s expected to nearly double by 2038.
Like the vast majority of people living with dementia, the outgoing former sales representative remains active in his community — and he wants to keep it that way as long as possible. He might well be on to something: Some research suggests that keeping people engaged with their communities helps keep them healthier, and may even help to delay the progression of some symptoms.
But as Laderoute experienced at the checkout counter, stigma and lack of understanding around dementia can stand in the way of feeling like a full member of the community. Now the retiree is working hard to tackle preconceptions through a program co-ordinated by his local Alzheimer society. Called Blue Umbrella, its goal is to create more senior-friendly communities by training people who deal with the public on how to communicate with and cater to the needs of someone living with dementia — a chronic condition that can rob people of their memory and ability to reason and even change their personality.
Laderoute is one of a number of people living with dementia who help deliver the program by acting as co-presenters and advisors. Sometimes they act as “secret shoppers,” who patronize a business incognito while staff members are learning dementia-friendly strategies, and then offer feedback about the service they encounter.
“I’m doing it for maybe my son, my grandchildren — anyone else that is diagnosed in the future,” says Laderoute from the tidy home in Kitchener’s outskirts that he shares with Monique, a retired nurse.
Proponents say Blue Umbrella has the potential to improve the quality of life for people living with dementia. “This could be a core piece of how we can build dementia-friendly communities, and I think this is the way we have to go when we’re looking at how to support people living with dementia in the community,” says Lisa Loiselle, associate director of research at the Murray Alzheimer Research and Education Program at the University of Waterloo.
Businesses that have implemented the training are listed in the society’s growing list of dementia-friendly facilities, and display the Blue Umbrella logo on their entrances to welcome customers. In Kitchener-Waterloo, where the Alzheimer Society Waterloo Wellington launched Blue Umbrella two years ago, 658 people have received training, from more than 30 cultural organizations, libraries, churches, and local businesses.
Drayton Entertainment organized training for 95 volunteers at its theatres in Cambridge and St. Jacobs. The program started making a difference almost right away, says volunteer co-ordinator Catherine Shaver, helping volunteers to better understand how to respond to a disability that is largely invisible. “The volunteers became very much aware, just to pay a little bit more attention and just to observe before they jumped in making assumptions.”
The training also dispelled preconceptions. “It was so enlightening to see these individuals who are coping so extraordinarily well with their illness,” she says. “It sent home the message that diagnosis of dementia is not all doom and gloom, and that for many, many people, once they have that knowledge that they have this illness, they respond well and they manage extremely well.”
Robin Smart, public education co-ordinator for Alzheimer Society Waterloo Wellington, says the program works because it puts employees face-to-face with people who are living with dementia.
“That’s where you get the face of it — that’s where you get the real-life examples,” she says. “You can hardly ignore somebody standing in front of you and talking about an experience of a clerk interacting with them until they found out they had dementia — and literally, in that split second, in that heartbeat, turned and only spoke to the wife after that. It’s pretty powerful stuff to hear.”
The idea for the program grew out of the Dementia Friendly Communities movement, which the Alzheimer’s Society spearheaded in the United Kingdom. The program’s first Ontario pilot was in 2014 in Bobcaygeon on the Trent-Severn Waterway. Today it’s delivered by 15 of the provincial organization’s 29 local chapters.
The Alzheimer Society’s Waterloo Wellington chapter recently received an Ontario Trillium Foundation grant to expand the program to Guelph. “We’re targeting large public groups,” Smart says. “We’d love to get in and do places like all the grocery [stores] and all the hardware stores and pharmacies, but it takes a fair amount of planning to get into large-scale organizations.”
The Alzheimer Society of Ontario wants to see expansion across the province, but it will need more funding in order to do so. “It’s a very labour intensive project, and right now this is almost a labour of love for [Alzheimer societies],” says Loiselle. She suggests the province’s $100 million dementia strategy that was announced last year could be one potential source of funding.
Felicia White, manager of volunteer strategy and program development for the Alzheimer Society of Ontario, says the program is supported by a provincial Ontario Trillium Foundation grant. Along with government funding, they’d also be open to private-sector support of the free program. “Partners have already come forward — like financial institutions, [and asked for the training],” she says. “They really want to work with us because they know that they want to improve their customer service standards.”
Laderoute imagines how his own customer service experience would have unfolded differently if Blue Umbrella training had been in place at the grocery store where he felt humiliated. The cashier might have asked if she could help him recall his PIN, or could have suggested he move to a quieter area to allow him time to gather his thoughts or offered to help count out money.
“With dementia, the more you get agitated, the worse it is,” he explains. A gesture intended to comfort him “would be very helpful. You would feel not so [alone, thanks to] the feeling of having somebody there to support you.”
This is one in a series of stories about issues affecting southwestern Ontario. It's brought to you with the assistance of faculty and students from Western University’s Faculty of Information and Media Studies.
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