By Gillian Slade on November 2, 2017.
A local resident says the visual image many have of dementia is a person in the final stages of the disease, and that needs to change if the stigma is to be removed, resulting in a more caring and supportive society.
That perception means we don’t have an understanding of those who are functioning well after being diagnosed with dementia, said Roger Marple, diagnosed with the disease about two years ago in his late 50s.
“It is possible to live well with dementia for some time to come,” said Marple, who admits it takes a little longer for his thoughts to develop, but he is still functioning at a high level. “Dementia is a medical condition. There is absolutely no shame in that.”
As long as there is stigma attached to the disease people will be afraid to speak openly about the challenges they face.
“It drives people underground,” said Marple.
Marple’s symptoms began about three years before a diagnosis was made. He’d be in the middle of a task and forget how to proceed. He realized he’d been using coping mechanisms for a while.
After the diagnosis, the medication prescribed made a huge difference. Transparent with his employer about his diagnosis, he was able to continue working for many months.
There is stigma, tons of it, said Marple, who wants to spread the message of hope and help the public understand that dementia is no laughing matter. We would not think about making a joke about cancer or ALS and we need to get to that place with dementia, said Marple. We need to get to the point where their is zero tolerance for jokes about dementia.
“They don’t understand the repercussions. Jokes about dementia on social media is disrespectful. We need to change the culture. I want to see people call people out in a respectful way.”
When people are diagnosed they should also be pointed in the right direction for information, said Marple, calling the Alzheimer’s Society the “king of information.”
After Marple was diagnosed, he did a Google search and found it all so depressing until he finally found someone who had been diagnosed and had a message of hope.
“This guy’s living well regardless of his challenges,” said Marple of his thoughts at the time.
Marple has strategies help him function well and independently. He uses Post-It notes with reminders, a calendar to keep track of things and even the stove timer to jog his memory when it is time to leave the house.
There are a thousand different faces of dementia and very few may fit the image you have in mind. Even if you know that someone has dementia it is important to talk to them like you would to anyone else and then see where the conversation goes, said Marple. You don’t have to be an expert on dementia to help someone.
Standing in the produce section of a supermarket, an older man asked Marple what day of the week it was. Even though they were standing in front of the tomato display the person asked him where the tomatoes were. He simply asked how many the man wanted, took a bag, selected the tomatoes and handed them over.
Withdrawing from the workforce was a challenge. Marple says he had to reinvent himself and got involved in the Alzheimer’s Society. He serves on the advisory board for Alzheimer’s Canada, is actively involved with the local chapter of the Alberta Alzheimer’s Society, and has done a presentation to local medical personnel helping them gain an understanding of issues from the dementia patient’s point of view.
Living life to the full is a big part of living well with dementia. Marple says his “happy ever after is now”.
For those diagnosed already, Marple says it is important to be open and honest with medical people about their challenges because there could well be something to help. Marple is also big on a healthy diet and exercise, both specifically tailored to those who have cognitive challenges.
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