The husband of a woman diagnosed with early-onset dementia has revealed the first symptom he noticed.
John and his wife Heather, Halifax, Canada, launched a YouTube channel called John and Heather's Dementia Journey after Heather was diagnosed with early onset dementia around the age of 60.
The channel serves as a platform to share their story, offer practical support, and raise awareness for others facing similar challenges - both individuals living with dementia and their caregivers.
Early onset dementia, which is diagnosed in people under the age of 65, is often misinterpreted or missed altogether due to its less typical timing.
Alzheimer’s disease is the most prevalent form and typically involves progressive symptoms like memory loss, confusion with time or place, difficulty communicating, mood changes, and declining ability to perform familiar tasks.
Reflecting on their journey, John is now looking back to his wife's earliest moments, well before any diagnosis, when the signs first began to emerge.
In one of their videos, the 64-year-old, addressed a question he’s frequently asked: “When did all of this start?”
He shared that the changes in Heather became noticeable around May 2021, prompting him to start keeping a journal of his observations. What initially appeared to be simple forgetfulness - “a series of memory lapses”- soon evolved into situations that gave him pause.
John shared that one incident stood out. “We were walking along the Halifax waterfront boardwalk, which has been redeveloped... and Heather and I have walked that, we've been down there a few times before that,” John recalled.
But despite the couple having visited the area multiple times, Heather suddenly remarked that the site was “all new." John recalled thinking: "What? What do you mean this is all new?"
Another moment came while they were cycling along a trail they had used before, when Heather said: “This is a beautiful trail, I've never been on this.” Even then, John said the memory lapses didn’t trigger major concern. “They didn't cause 'alarm bells' to ring,” he admitted.
That changed one day when Heather took their dog for a walk at a local park. She called John, saying she’d lost the car keys. But when he arrived, he found her standing next to the car with the keys lying right there on the hood.
“It just didn't register,” John said. “And that was quite alarming because that is completely uncharacteristic of Heather to do that kind of thing.”
As time went on, the symptoms became more difficult to dismiss. John observed “unusual actions and changing behaviors,” such as Heather having trouble articulating her thoughts and showing a level of “apathy” that was unlike her.
Eventually, John became Heather’s full-time caregiver until her move to a long-term care facility.
Now, through their YouTube channel, the couple shares their reality with thousands of viewers by offering honest accounts and emotional support to others who are navigating similar paths.
The response has been deeply personal. Many commenters have opened up about their own experiences with dementia.
"Thank you for sharing you and your wife’s struggles. I’m taking care of my husband, who has dementia at only 63 years old. I have seen his decline for the past 8 years. It’s a challenge, and I am very worried for our future. Darn tough and sad," one user said:
Another wrote: "I have just begun this journey with my husband of 58 years. I appreciate your approach to caring for your wife, and I hope I can be as brave and compassionate as you. Thank you for all of your advice. I listen to every word."
A third added: "Thank you, thank you for sharing your experiences living with a spouse with dementia. You are helping so many who are going through or will be going through 'the long goodbye'."