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Almost 50% of Canadians would not want others to know if they had dementia, says new survey

Alzheimer Society of B.C. campaign aims to end stigma in Revelstoke

The Alzheimer Society of B.C. announced Jan. 8 that while awareness about dementia has increased, stigma and negative attitudes about it continue to persist.

The Society is releasing findings of a new survey to coincide with Alzheimer’s Awareness Month in January and to kick off its new social awareness campaign – I live with dementia. Let me help you understand – to spark conversations and encourage Revelstoke residents to see dementia differently.

The Leger-led online survey, which canvassed 1,500 Canadians between the ages of 18 and 65, also reveals that 46 per cent of respondents would feel ashamed or embarrassed if they had dementia, while 61 per cent of those surveyed said they would face discrimination of some kind. According to the survey, one in four Canadians believe that their friends and family would avoid them if they were diagnosed with dementia, and only five per cent of Canadians would learn more about dementia if a family member, friend or co-worker were diagnosed.

“Stigma significantly affects the well-being of people living with dementia,” says Carly Gronlund, Support and Education Coordinator for the Alzheimer Society of B.C. for Revelstoke and North & Central Okanagan region. “In order to build a dementia-friendly society, we need to move away from fear and denial of the disease, towards awareness and understanding.”

To tackle stigma, the Alzheimer Society is letting the experts – people affected by dementia – do the talking. One of these experts is Sandy Campbell, whose mother and husband were diagnosed with vascular dementia. After the diagnoses, Sandy found that while some of the people in her life were quite supportive – particularly if they had personal experience with the illness – other friends pulled away out of discomfort. She encourages empathy, and hopes that people who need help will ask for it, rather than turning inward.

Sandy and others invite Revelstoke residents to hear their inspiring stories and take a few pointers from them on how to be open and accepting towards people living with dementia.

Their stories are featured on a dedicated campaign website, where visitors will also find tips on how to be more dementia friendly, activities to test their knowledge, and other resources to take action against stigma and be better informed about a disease that has the potential to affect every single one of us.

To help stop stigma and read the full survey, visit ilivewithdementia.ca – and use the hashtag #ilivewithdementia to help spread the word.

Other highlights of the survey

· 56 per cent of Canadians are concerned about being affected by Alzheimer’s disease;

· Of greatest concern is the fear of being a burden to others, losing independence and the ability to recognize family and friends;

· Only 39 per cent would offer support for family or friends who were open about their diagnosis;

· Three in ten Canadians (30 per cent) admit to using dementia-related jokes.

Quick facts about dementia

· Today, more than half a million Canadians have dementia (including Alzheimer’s disease);

· In less than 15 years, an estimated 937,000 Canadians will have dementia;

· Alzheimer Societies across Canada provide programs and support services for people with all forms of dementia, including Alzheimer’s disease, as well as their caregivers;

· The Alzheimer Society is a leading Canadian funder of dementia research and has to date invested over $50 million in bio-medical and quality-of-life research through the Alzheimer Society Research Program.