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Why dementia makes us uncomfortable

Written by: Marilyn Linton, QMI Agency
Mar. 4, 2013

A survey released Wednesdayshows Canadians are delaying seeking diagnosis for dementia symptoms. (QMI AGENCY PHOTO)

They say there’s nothing to fear but fear itself. But many of us are afraid when we see someone showing signs of dementia or hear that a friend or colleague has "memory problems." “The fear is that the person may do something or say something embarrassing,” says Guelph, Ont.’s Kathy Hickman, education manager of the Alzheimer Society. “The fear people have is in not knowing what to do or say or how to act around a person with dementia.”

So what would you do if you found out a close friend had been diagnosed with dementia? Would you avoid them, feel awkward around them, fear what they might say or do? Chances are it’s just a matter of time before you will know someone with dementia – or have it yourself: The chronic, progressive brain disorder will affect 1.1 million Canadians in the next 25 years.

According to a recent poll by Alzheimer’s Disease International, 40% of people with dementia reported they had been avoided or treated differently after diagnosis. The fact that dementia is hard to talk about, that it’s misunderstood, and that many of us are uncomfortable around people with the diagnosis is what led to the Alzheimer Society of Canada to launch its recent anti-stigma campaign (alzheimer.ca/letstalkaboutdementia).

Called “See me, not my disease,” it’s aimed at all of us who harbour misconceptions about the illness. For instance, says Hickman, we jump to the conclusion that anyone with dementia is incapable. “As soon as we learn someone has dementia we assume they can’t do things for themselves, that their thinking is impaired, and that they won’t remember things.

“We want people to learn about the disease so it’s not so scary for them when they meet someone with dementia,” says Hickman, adding that communication strategies can be found at alzheimer.ca.

“People with dementia are still people,” says Lethbridge, Alta.’s Diane Muma whose husband has Alzheimer’s. “They live life through emotions more than words.” She and some other spouses started a cafe where people with dementia and their caregivers meet regularly in a safe setting for coffee, treats, support and relaxation. “There’s a buzz in there,” she says, “and you can feel everyone relax. They know they are with others who understand.”

Sometimes you just go with the flow, she says, adding that often people don’t know what to do around someone who has dementia. She’s not sure her husband knows who she is some days, but she walks by his side, sometimes for hours, or sits with him. “You don’t need to talk, they are still aware you are there. The connection is there.” There are physical changes in the brain that impact a person’s ability to function daily, says Hickman. But while progressive, the deterioration can take years. Chances are you will know someone who has dementia, she adds. “Learn about it early before it hits home.”

What’s the difference?

Dementia is a broad term that speaks to a number of conditions that have to do with cognitive impairment. Alzheimer’s is a particular type of dementia, the most common kind.

Dementia warning signs

• Memory loss that affects day-to-day function
• Difficulty performing familiar tasks
• Problems with language
• Disorientation o time and place
• Poor or decreased judgment
• Misplacing things in inappropriate places
• Changes in mood and behaviour

 

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