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Keeping people with dementia connected during the toughest of times

By Moojan Haidari, Communications & Fundraising Specialist – Ottawa

The minute the screen lights up and voices begin to chatter on Carefor’s daily Virtual Adult Day Program Zoom call, David Vincent, 80, has a big smile on his face, swinging his feet to the music. His favourites are classic Irish tracks, which remind him of his days growing up in Ireland.

His wife and care partner, Barb Vincent, perches over his shoulder relieved he’s comfortable before making her way to the kitchen to relax and finish other tasks. From time to time, she walks by to see staff and clients laughing and enjoying each other’s company. Sometimes, she joins in on the fun. There’s never a dull moment.

Although David is quiet during the calls, he’s always engaging in his own way, and never misses a get-together. For David, who was diagnosed with Dementia of the early Alzheimer type (DAT) 10 years ago, this routine provides comfort and joy. For Barb, it’s a lifeline.

While everyone’s journey with dementia is unique, it’s often a journey of compassion and resilience. For the thousands of people in our city living with dementia and their care partners, the COVID-19 pandemic has only accentuated their daily challenges, as they continue to stay strong and connected during these difficult times.

Journey towards diagnosis

There’s often a preconceived notion that people have about dementia that the disease only affects the elderly, but that couldn’t be farther from the truth.

“It took five years until David got a dementia diagnosis,” Barb said, noting that he had mild symptoms when he retired in his mid-sixties as a Presbyterian Minister in 2006.  “Dementia can be difficult to diagnose, especially when it happens at a younger age. The fluctuations make it difficult and it’s really the people who live with the person who can pick up those nuances and out-of-character moments.”

Barb noticed David’s abilities and interests starting to change as he became more withdrawn and began forgetting significant memories.

“He had a wonderful memory,” she recalled. “After four years of telling our gerontologist that this isn’t normal aging at this age, we were referred to a neuropsychologist. Then, after a fair amount of testing, that’s when we learned David had early dementia.”

The news was a lot to take in, not only for David, but also for his loved ones. “It was heartbreaking for all of us,” Barb said, recalling the difficulty of coming to terms with what that meant for the future. While David has been able to keep his sweet nature, Barb admits he’s not the same person he once was: “It’s hard for the children not to have the dad who can discuss everything from politics, theology and all the interests that he had. For me, it’s hard not to have a partner who is always there for me. While, he’s still here, he’s not able to help, and that’s hard.”

A dementia diagnosis has a way of making one’s world smaller and more isolating, during a time when connection has never mattered more.

Building from missing pieces

Dementia isn’t something you plan for, and it isn’t something you foresee dealing with in retirement. It brings lives to a standstill, forcing families to pick up the missing pieces along the way.David and Barb looking through photo albums.

“It’s a constant adjustment over time,” Barb said, noting how the couple had to switch roles during their journey with dementia, “David was extroverted and I was introverted. Now I do all the talking.”

While Barb looks back on her 50-year marriage with a smile, the couple had plans to travel and spend more time at their cottage during retirement: “That all disappeared … it’s very sad. David became very uncomfortable at the lake and I took early retirement so we could do more things together that we wouldn’t be able to do later on.”

Two years ago, they decided to move from Calgary to Ottawa to be closer to their two sons. “The two months we didn’t have access to programs was challenging. I had also had knee surgery and was full-time caregiving.”

Barb needed more than a helping hand. She needed an avenue to connect with a supportive local community of professionals and families who understand the challenges of dementia. It’s through unique respite programs where people living with dementia and their care partners can stay connected and live a more meaningful life.

Finding meaning through Carefor

Carefor’s Adult Day Programs were the second in Canada to be Best Friends Certified, which is built upon the premise that relationships are fundamental to supportive care. Currently, Carefor’s respite programs support more than 400 people living with dementia. Carling Day Programs Team Leader Makini Medina says these unique programs offer care partners a safe place for their loved ones to go that focuses on their mental and physical wellbeing. People living with dementia enjoy a day full of activities that keep them engaged, laughing, and fulfilled.  David and Barb engaging in a virtual painting class.

“Social connection is essential for reducing the progression of dementia,” Makini said. “And we do best by the care partner by allowing them to do things many of us take for granted, while also giving them peace of mind.”

During her six-hour respite, Barb has a chance to get a haircut, meet a friend for lunch, have a shower, get to her medical appointments, and do things around the house that would have been difficult to do if she was caregiving. Barb is grateful that she’s not on this journey alone thanks to all the supportive staff and care partners she has met through the program.

“Caregiving is very stressful. It’s a full-time job, and more, because you feel like you can’t get it all done and still help that person be involved and active. You can improve your quality of life and your loved ones by reaching out and creating those meaningful interactions that helps to keep who they really are alive.”

The provincial government’s lockdown orders in March were a clear sign to full-time care partners that things were only going to get harder from here.

Reducing isolation during COVID

COVID-19 has put a halt to many of our lives, but for people living with dementia, it has only exacerbated their symptoms.

“We know what isolation does to dementia,” Barb said, noting how David has declined over the past few months. “We can’t have as close as contact with our grandchildren, so David doesn’t always recognize them when they come. It’s challenging for everyone on this journey, but even more so for people dealing with the illness.”

Many clients and their loved ones can attest that life without Carefor is quite lonely. Carefor’s dementia team recognized the dire need for support during this time and immediately scheduled virtual calls, sent activity kits, and organized online events to keep people as connected as possible.

“We’re trying our best to maintain an engaging routine for them. In a world that’s already confusing, keeping routine and normalcy is very important,” Makini said. Program staff Makini Medina socializing with clients.

While this new normal hasn’t been easy to adjust to, Makini knows it’s making a difference and reducing heightened social isolation when clients continue to log on and find meaning throughout their day: “To see them laughing and engaging is all we can hope for any of our clients. They’re trying to work through this hard time.”

A time when laughter and compassion really are the best medicine

There isn’t a cure for dementia – and the number of cases aren’t declining. According to the Alzheimer Society of Canada, an estimated 500,000 Canadians are living with dementia – and that number is rising exponentially every year. None of us knows who will be affected,  and if and when there will be a cure. While we wait, programs like Carefor’s Adult Day Programs help people manage the daily reality and struggle of living with dementia.

“We need programs like Carefor’s that address these needs specifically,” Barb says. “It’s a specialty, and Carefor has taken an interest in making the quality of life for a person living with dementia better.”

Currently, there are nearly 300 people on a waitlist to receive these respite and wellness services. Makini agrees that there is a need for more specialized programs in our city, which rely heavily on fundraised dollars to operate.

“We can’t imagine our lives without it,” Barb said.

Carefor’s Adult Day Programs are a lifeline for hundreds of people and their loved ones in Ottawa. Carefor is proud to be at the forefront of ensuring the health and wellbeing of people living with dementia and their care partners, today and into the future.

You can help us keep people like David and Barb connected at home by giving at carefor.ca/donate.