Husband of woman diagnosed with early onset dementia reveals the first symptom he noticed
John launched the couple's YouTube channel after his wife was diagnosed around the time she turned 60
A man whose wife is living with early onset dementia has spoken out about the first symptom he noticed prior to her diagnosis.
Husband and wife John and Heather, from Halifax, Canada, decided to launch their YouTube channel together after Heather received her diagnosis of dementia, which came around the time she turned 60 years old.
Early onset dementia is defined by a diagnosis of dementia in someone who is younger than 65, with Alzheimer's disease known to be the most common form of the condition, which can affect memory, thinking and behavior.
Named John and Heather's Dementia Journey, the couple's YouTube channel aims to offer insight and advice for people living with dementia and their loved ones, including the 'ups and downs' of caring for someone, coping strategies and raising awareness about dementia and the needs of caregivers.
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In one video, John, 64, addressed a common question he had received since launching the YouTube channel - 'When did all of this start?'
The husband explained that he began to notice changes in Heather around May 2021, so he kept journals detailing his observations.
He explained that Heather experienced 'a series of memory lapses', with one instance in particular standing out to him.
"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 began.
However, despite the fact the couple had been in the same area multiple times before, Heather went on to comment that the site was 'all new'.
"I thought, 'What? What do you mean this is all new?'" John recalled.
Another instance came when the couple went out cycling together on a trail they had visited before 'a few times', when Heather commented: "This is a beautiful trail, I've never been on this."
Though John noticed the memory lapses were unusual, they didn't cause 'alarm bells' to ring for him.
That moment came when Heather took the couple's dog out for a walk in a local park and called John to tell him she'd lost the car keys. When he arrived to help look for them, he found Heather standing by the car with the keys on the hood, 'right in front of her'.
"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."
Over time, John noticed there were a 'series' of unusual actions and changing behaviors that 'built up', including Heather's inability to communicate some of her thoughts, and a notable 'apathy' in situations where John would have expected a stronger reaction from her.
John went on to become Heather's full-time caregiver following her diagnosis, before she moved to a long-term care facility.
If you've been affected by dementia or Alzheimer's and would like to speak with someone in confidence, contact the Alzheimer's Association via 800.272.3900 open 24 hours seven days a week.
Emily Brown