Blue Umbrella Project offers symbol of safety and support to people living with dementia

Gerard Laderoute, a Kitchener resident who has been living with dementia for over nine years, knows first-hand the challenges of navigating communities that aren’t equipped to support people like him. “It’s very frustrating and humiliating when you can’t remember,” says Laderoute, “so we try to bring awareness that people have difficulties, and that the more agitated people are the worse it becomes”

An initiative by the Alzheimer Society Waterloo Wellington and the University of Waterloo’s Murray Alzheimer Research and Education Program (MAREP) aims to shape safe, welcoming communities for all residents by training businesses and organizations to build dementia friendly communities.

There are over 10,000 people living with dementia In the Waterloo Region, Guelph, and Wellington County. One of the greatest challenges they face is finding ways to remain active and involved in communities that aren’t able to accommodate their needs.

“It’s not just about biomedical needs associated with a disease,” points out MAREP Associate Director Lisa Loiselle, “We’re trying to cure it and hitting brick walls so we need to start thinking about how to live with it and ease the transitions associated.”Although there is no cure, research has indicated that individuals who remain active and socially engaged may experience some delay in symptom progression.

Organizations and businesses attend a training session led by an Alzheimer Society representative and a person living with dementia. Afterwards, they receive a blue umbrella window decal to signal to customers that they are supportive and welcoming to community members living with dementia.

Drayton Entertainment, a live theatre company active throughout southwestern Ontario, was eager to get involved in the project. To Catherine Shaver, volunteer coordinator at Drayton, the Blue Umbrella Project offered a “very effective way to respond to the growing need in our community to provide specialized support and service to people living with dementia.” Shaver’s involvement with the training stemmed from the company’s commitment to “providing an entertaining, affordable and accessible experience to all patrons visiting our theatres.”

Gerard was pushed by his wife of 48 years, Monique, to become involved with the Alzheimer’s Society shortly after his diagnosis with vascular dementia. “It came as a shock, at first, and I didn’t want to do anything,” he explained, “I know what it leads to. I’ve watched two siblings die of it.”

Monique did not plan to accept his diagnosis idly, telling him “I’m going to get involved with the Alzheimers Society, so you can sit at home and feel sorry for yourself or you can come along, but I’m going.” A year later, Gerard joined his wife at meetings, and the couple are now on several committees including the Blue Umbrella Project, have taken part in post-training visits, and have co-facilitated the training.

Laderoute explained that after watching two of his siblings pass away with dementia, his diagnosis highlighted the genetic component of the disease, and drove him to get involved and to make a difference for his grandchildren, and others to come. The couple emphasized the importance of staying socially engaged, sharing their busy schedule of bowling nights, committee meetings, dances, and dinners they've hosted in their own home with their friends from the Alzheimer Society.

The presence of people living with dementia makes the training unique and impactful, as Catherine Shaver of Drayton Entertainment notes, “I was genuinely surprised and inspired by the strength of these individuals. They demonstrated that living with dementia can still be a life full of positive experiences, humour and full-filling accomplishments.” Including people living with dementia in the training empowers those individuals to be engaged and involved in their communities, while ensuring the training meets their needs.

Members of Waterloo’s Dementia Advisory Group, founded by Loiselle, see the training program as a way to help them to re-shape how society views dementia, and offer a safer and more pleasant experience in the day-to-day lives of people living with dementia. Participants leave training with a tip card full of helpful guidelines for communicating with people with dementia, and follow-ups at a later date for further support.

Loiselle’s evaluation of the program found it provided a new opportunity for people living with dementia to be included in their community, and that participants valued the ability to learn about dementia first-hand from a co-facilitator with lived experience.

Staff enhanced their communication skills, gained confidence interacting with people living with dementia, and learned to connect with individuals by supporting their reality. Catherine Shaver noted the comfort her staff experience knowing “how to support people without being intrusive. Several people spoke about being more tolerant and patient with all of our patrons because they were more aware that a disability may not always be obvious.”

Shaver’s own greatest takeaway from the training was a quote, "A person with dementia’s experience is always either enhanced or diminished by how we choose to relate to them,” which she says she will keep that in mind whenever she speak with a theatre patron and especially when that patron has special needs.

The training has served 429 people in Waterloo-Wellington since Fall 2016, and has spread to other communities to reach 2351 people in Ontario. Since August 2014, more than 90 training sessions have taken place, including many major arts and cultural centres in Waterloo Region, such as Drayton Entertainment, THEMUSEUM, the Canadian Clay and Glass Museum, the Kitchener-Waterloo Art Gallery, and many more.

Moving forward, Loiselle envisions an online component for businesses to refer to post-training for memory refreshers and educating new staff, which would help reduce the highly demanding nature of the program.

She also hopes to establish a business directory of those who are involved, so that people with dementia and their caregivers can have a list of safe, comfortable places to eat and shop, benefitting both organizations and customers. For the Laderoutes, they look forward to a world in which others living with dementia can feel comfortable wherever they are. “My dream, and the dream of the committee, is to have this training be everywhere: for every community to be safe,” Gerard said.

Above all, Lisa hopes to improve awareness and create more compassionate communities. “We have a population that is aging, and as those seniors increase in numbers, the number of people living with dementia is going to rise too. Compassion isn’t just ideal, it’s mandatory.” Lisa Loiselle