Dementia in the days of COVID-19: Craig's story

Craig's update: One year later

While so much has been delayed or postponed due to the pandemic, in Craig Burns’ world, COVID has brought with it big changes. Last spring Craig, who lives on his own with young onset Alzheimer’s disease, was participating in dementia research, volunteering virtually, working out and finding ways to stay connected with his friends. A year later, Craig’s still keeping busy with the same itinerary, while he also prepares to move into an independent living home, a decision he describes as proactive and positive.

“I’m the one initiating it and I think that makes a big difference,” Craig says. “I’m being positive about the whole thing. I know it’s time for me to make a move.”

His new home offers options to live independently, with assistance, or, for some residents, complex care – a range of support he doesn’t need yet, but he’s happy to have available to him as the symptoms of dementia progress and he makes advance care plans.

Something else has influenced Craig’s discussions about the future with the family. On May 1, the last of Craig’s six grandchildren was born. “I call them my six pack,” he says. “There’s nothing like new life to show us how beautiful life is and what we can do.”

Craig is open about managing depression and anxiety, which he recognized was accelerating more quickly during the pandemic. To help manage, he continues to work out three times a week, walks at least five kilometres a day and limits the amount of news he consumes. He also gets a good laugh in where he can and makes time to visit with all the new pandemic puppies he sees on his walks. Dog owners are more open to stop and chat, he says, and the dog is a great intro into a conversation that feels normal.

“The socializing is therapeutic for me,” he says. “When I’m out walking, I can also process upcoming things, things that have happened, resolve and make plans for the future. It’s a good exercise to reflect and plan. If I get overwhelmed, I’m no good for anyone.”

Craig remains an active volunteer as a member of the Alzheimer Society of B.C.’s board of directors and its advisory group of people living with dementia, as well as a participant in research on stigma and discrimination and innovative treatments for young onset Alzheimer’s disease.

“I want people living with dementia and caregivers to live as well as possible,” he says. “Each day has its challenges and I aspire to consistently live well with dementia. That’s the goal.”

Craig’s story: Proactive during the pandemic (May 2020)

Since Craig Burns was diagnosed with young onset Alzheimer’s disease, he has become an outspoken advocate for people living with dementia. He threw himself into volunteer work on a national awareness campaign, helps guide the Alzheimer Society of B.C. on its Leadership Group of People Living with Dementia, as well as the Board of Directors, participates in clinical dementia research and speaks at Society events.

He also enjoys spending time with his children and grandchildren, hitting the gym three times a week and meeting with other people in Kelowna who are living with dementia at an early-stage support group. Keeping socially engaged and physically active are keys to maintaining a healthy lifestyle for anyone – but for people like Craig, they’re a lifeline.

“I deal with depression with Alzheimer’s and this whole scenario is causing quite a bit of anxiety,” Craig says. “I’ve done a bunch of projects around the home, but I’ve run out of things to do.”

Much of his volunteer work continues remotely, but for someone living with dementia on their own, meetings on a screen are no replacement for human contact – and often more challenging because of added technical issues. Craig tries to keep proactive with virtual or distanced visits with friends and family. His advice for others alone during the pandemic is nothing new, he says, but valuable just the same:

“Maintain a regular pattern,” he says. “Don’t go wild on trying to find new things, but if something new comes up, try it.”

While he waits for social gatherings to return, the gym to open up, the support group to resume, Craig is walking and reflecting a lot these days. He takes the trails around Okanagan Lake and buys coffee from newly-made friends at one of the few businesses still open. Sometimes he’ll sit at the park where other people are in sight, alongside osprey and otters at the bird sanctuary.

“I’ve rediscovered the beauty of nature,” Craig says. “The beauty of birds singing, the beauty of spring and the blossoms coming out.”

On May 31, people across Canada will join together to raise awareness and raise funds – and show that no matter what the world looks like, Canadians are united to support people affected by dementia. Register and fundraise for the IG Wealth Management Walk for Alzheimer’s online and join Alzheimer Societies across Canada to celebrate online on May 31 starting at 9 a.m. PDT. You can watch the event anywhere you have an internet connection.

If you have questions or concerns about dementia or someone living with dementia in your care, call the First Link® Dementia Helpline. Monday to Friday from 9 a.m. until 8 p.m. in English (1-800-936-6033) and from 9 a.m. until 4 p.m. in Cantonese or Mandarin (1-833-674-5007) and Punjabi (1-833-674-5003).

To explore the rest of our "Dementia in the days of COVID-19" stories, visit: alzbc.org/COVID-stories.