Still me on this journey

Imagine you’re at work, and you’re having ‘that day’—before you’ve finished yourcoffee, you realize you’re in for it: everything that can go wrong is happening all at once. Your computer is acting up, urgent emails are flying in, and the keystone component for your project that’s due imminently is stuck in the ether.

At the end of the day, you get into your car, completely spent and ready to head home, only to hit construction, and traffic grinds to a crawl. You try a different route, but there's an accident up ahead. Eventually, you find a clear path, only to catch every red light along the way. By the time you pull into your driveway, you're more exasperated than when you left work.

As you walk in the door, your agitation level is maxed out, and you’re using every mental faculty not to take your frustration out on loved ones. Finding the capacity to regulate your emotions and stay in control has left you drained, upset, and wanting to withdraw. You’re running on empty.

The information super highway

Our brains, as it turns out, are not that different than the vast network of roads on a city map: a collection of neighbourhoods linked together by intersecting streets, junctions, sub divisions, bridges, and freeways. When roads are clear, it’s a breeze to navigate to your destination. But when there are sudden interruptions on the route, your grip on the wheel tightens as you brace for impact.

And just like how roads have directions, signs, and lights to control traffic, so does your brain. Before you lash out at your loved ones because you’ve had a bad day, your brain’s inner traffic light will turn yellow, giving you a chance to take a moment to pause before you react. But for people experiencing cognitive decline, the roads they’ve always taken may be rerouted, or even bulldozed over. Mental traffic lights may not function in the same way.

Traffic jams and roundabouts

For many people experiencing cognitive decline, the brain's ability to store and recall new memories becomes damaged. While there are a variety of ways this can affect a person, commonly it means an individual may not recognize familiar places or remember recent changes.

Imagine waking up thinking you’re at home with your family, only to find yourself alone in an unfamiliar bed, with no idea why. For someone experiencing memory loss, their lived reality often doesn’t match what’s actually happening around them. In their mind, their children might still be young. They may find they need help getting dressed or that everyday choices, like what they eat or where they live, are no longer theirs to make. It can be disorienting and deeply unsettling.

“In the past, treatment approaches for individuals experiencing cognitive decline were often quite harsh,” says Megan Ede, United Minds Manger at Fish Creek, “There was a strong stigma surrounding dementia. People were frequently isolated from their loved ones, and therapies focused on forcing them into our version of reality rather than meeting them in theirs. When people struggled to follow these rigid approaches, they were labeled as ‘non-compliant’ or ‘aggressive’. As a result, treatment was not only ineffective, but it often hastened the progression of the disease.”

Megan continues, “When residents are integrated into a community setting and supported with empathy and respect—when they are given a sense of ownership over their lives—we see real change. Their outlook improves. The difference we see in residents who are actively engaged and valued for who they are is profound. It truly impacts their quality of life and prognosis.”

Redrawing the map

Thanks to organizations like Alzheimer Calgary and thought leaders in the field, research, care, and treatment protocols are evolving. With a better understanding of the progression of cognitive decline and evolving approaches to supports, we are now seeing vast improvement in outcomes for those experiencing memory loss. Alzheimer Calgary’s Still Me campaign focuses on what matters most: your loved one is very much still a vibrant, fully formed individual, who has experienced the full gamut of what life has to offer: love, loss, trauma, joy—and most importantly—still has value, and deserves to live with purpose on their terms.

Recently, Alzheimer Calgary invited Dr. Allen Power, an internationally renowned dementia care researcher, to share a keynote address with Calgary’s public. The sold-out event offered a glimpse into a different way of approaching dementia for caregivers and family members, those living with dementia, and people who work in various senior care roles. Dr. Power’s research has contributed vastly to reimagining what memory care looks like, focusing less on medical intervention, more on personal connection and well-being, and meeting individuals where they are, rather than where we’d like them to be.

“All too often, we focus on the symptoms of dementia rather than the individual experiencing them. In doing so, we narrow our understanding of what that person is truly capable of,” Dr. Power explains. “When we view someone solely through the lens of their symptoms, we lose sight of the person behind the disease. If we were placed in similar situations, many of us would respond in the same way. Imagine being woken up by a stranger, escorted to a bathroom, asked to disrobe, and then directed to take a shower while being monitored. Wouldn’t you feel uncomfortable? Other common scenarios: being made to sit for breakfast before you’re ready, told you can’t take part in an activity you enjoy, or denied permission to leave your room. Chances are, you’d feel upset too.”

Dr. Power continues, “In fact, we often hold people living with cognitive decline to higher behavioural standards than we do ourselves. For individuals in advanced stages of the disease, the ability to express vulnerability through words is often lost. Instead, they communicate in the ways available to them. Sometimes by raising their voice, gesturing to create space, or attempting to leave a situation that feels unsafe.”

“As we’ve learned more, we’ve seen that when we remove triggering routines and allow individuals to move at their own pace, remain engaged in community life, explore creative outlets, or simply have the freedom to be themselves, the frequency of so-called ‘non-compliant’ behaviours decreases significantly. More importantly, we foster an environment of safety, dignity, and empowerment.”

The journey continues

When United Active Living began planning its communities, its approach was born from the idea that there could be an alternative to the traditional model of dementia care that commonly looks to manage physical risk: locked doors, rigid routines, and secure units being common features in community settings.

Looking to examples out of Scandinavia and learning from the work and research of thought leaders like Dr. Power, United’s integrated approach was established with the opening of its Garrison Green community in 2008.  The model, which was then expanded to its Fish Creek North community upon opening in 2015, offered one of the first communities in Canada with a fully integrated experience for those living with cognitive decline. Since its early beginnings, United Minds services have become one of the most revolutionary and progressive memory care offerings in North America, giving a new alternative where residents have freedom to choose how they spend their time, the opportunity to continue living with a friend or partner, and full integration among peers, with unrestricted access to shared spaces, programs, and amenities.

“United’s Fish Creek North and Garrison Green communities offer support for those living with dementia and cognitive decline through its unique United Minds services. Here, residents experiencing cognitive decline are fully integrated into the community,” says Kera Redlack, Vice President Wellness and Employee Engagement at United. “There are no secure floors, and all residents can take part in everyday programming, share meals in the main dining room with their friends, and continue to live with their loved ones. It takes away a lot of the stigma and fear of a dementia diagnosis.” Kera continues, “Residents don’t have to fear being shut away, and they remain valuable members of the community. Isolation is a huge risk factor for older adults of all abilities, but especially so for those living with memory loss. Having the support of a team and peers is significant to nurturing overall wellbeing.”

At times, you might look at your loved one and feel like you've lost your way, like the person you knew has vanished from the map. It’s difficult to witness someone you love struggle, especially when it feels as though they’ve become a shadow of their former self. And yes, while some of the familiar landmarks may have shifted, your loved one is still here, just following a different route than before.

The route may be longer, the scenery unfamiliar, and the streets renamed, but the adventure is far from over. The road you once travelled together may have changed, but it hasn’t disappeared. It’s still there, waiting to be explored, and still worth every stop on the journey.

Stop by Fish Creek North and Garrison Green to learn how our United Minds services can help you navigate a new path to connection with your loved one.