The Alzheimer’s Society of B.C. is trying to decrease the stigma surrounding dementia with a new campaign that lets those with dementia share their stories. Photo by Chalmers Butterfield.

People suffering from dementia are sharing their stories to help others understand

The Alzheimer's Society of B.C. is trying to combat the stigma surrounding dementia.

The Alzheimer Society of B.C. announced earlier this month that while awareness about dementia has increased, stigma and negative attitudes about it continue to persist. A recent survey showed that almost 50 per cent of Canadians would not want others to know if they had dementia, and 56 per cent of Canadians are concerned about being affected by Alzheimer’s disease. The greatest concerns are fear of being a burden to others, losing independence, and losing the ability to recognize family and friends.

The survey also showed that only 39 per cent of Canadians would offer support for family and friends who were open about their dementia diagnosis; and Tara Hildebrand, the Alzheimer Society of B.C.’s support and education coordinator for the Central Interior, says that the stigma which still surrounds dementia is “Very disheartening.

“We do what we can to help families, and provide so much support and resources, I’m surprised that there is so much stigma [surrounding dementia] still.”

To try to encourage people to see dementia differently, the Alzheimer Society of B.C. recently launched a new social awareness campaign called “I live with dementia. Let me help you understand.” The Society is letting experts—people affected by dementia—do the talking; people such as Mario Gregorio, who was diagnosed with Alzheimer’s disease and vascular dementia at age 58. Mario and others share their stories at www.ilivewithdementia.ca, where the full results of the survey can also be found.

“Sharing your story can improve your quality of life, not decrease it,” says Hildebrand. “The more people share, the more it helps the community understand what is going on with the family. People have misconceptions about what people with dementia look like. They go right to the end of life scenario, but people diagnosed with dementia still have lots of life left.

“People can still be active. We teach families coping skills, to improve the quality of life for caregivers and victims.”

Hildebrand facilitates a support group for those affected by Alzheimer’s at the Ashcroft Hospital on the first Tuesday of each month from 10 a.m. to noon. There is no fee, but pre-registration is necessary, so that Hildebrand knows who is coming in case she needs to cancel for some reason. To register, call (250) 377-8200.

“People in the group are very supportive of each other. Everyone’s story is different, because no one dementia story is the same; but they share a common thread. It’s important for people to feel comfortable sharing. There’s so much support out there.”

Hildebrand says that support for caregivers looking after someone with dementia is vital for caregivers’ well-being. “They need support and understanding. Without it, their health starts to decline. They need to understand how and why people with dementia are changing. It helps the family move forward and make better plans.”

Looking at the survey results, Hildebrand says that people with dementia can be shy about sharing their story. “They’re scared people will treat them differently. They think ‘You didn’t know I had dementia until now, so why are you treating me differently now?’ People with dementia can still be living alone, shopping, driving, paying bills. They can still contribute so much.

“And social contact is vital. How they visit and participate will be different, but we can support that. We explain to the family how visiting will be different, but how important it is.”

Hildebrand was somewhat taken aback by the fact that only 39 per cent of people who took the survey said they would offer support for family or friends who revealed they had dementia.

“Really? I’d like to know how the questions was worded. According to the family members I speak with, everyone wants to help.”

She makes the point that people who are living with dementia are living with grief. “We call it ‘ambiguous loss or grief’, or ‘grief purgatory’. The person [diagnosed with dementia] is still here, but has changed, and people don’t recognize that person anymore, and miss how they used to be.

“Since the dementia sufferer can’t participate in that grief, it makes it very lonely for the caregiver.

“They’re sort stuck. The progress of dementia can take many, many years. The loss is slow, and there are many layers of loss, which is why we call it grief purgatory.

“It’s different to sudden grief, which is why the support piece is so important.”

She says that if people are concerned about dementia, or have questions even before a diagnosis, they should call her. “We can help in so many ways, including how to get a diagnosis.”

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