fear and stigma surrounding dementia continue to act as barriers to care
3 minute read
almost a quarter of canadians would rather not know if they have dementia because of stigma-related fears.
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roughly 771,939 canadians are currently living with some form of dementia. the disease, which robs people of their memories, ability to communicate, judgment, personality and independence, is debilitating. there is no cure once dementia begins—you can only slow progression.
given the seriousness of the disease and its impact on people, roughly 53 per cent of canadians are worried about developing it as they age, according to a national poll by canadian market research firm leger. the survey also highlights that 66 per cent of canadians are worried about becoming a burden on their loved ones if they develop dementia.
this fear, while not unfounded, is compounded by the fact that 24 per cent of people don’t want to know if they have dementia and 46 per cent note that if they did have symptoms, they wouldn’t know where to turn for support.
these numbers showcase that a lack of knowledge surrounding support and resources and dementia stigma continues to thrive in canada, and it’s harmful for canadians who do end up developing the progressive neurological disease.
dementia stigma keeps people isolated and alone
avoidance of dementia symptoms stems from people being afraid of not being able to live their lives on their own terms. this loss of independence and shift toward needing others or becoming a burden can keep people from recognizing that it may be time to investigate symptoms.
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however, waiting for care can be detrimental.
“avoiding a diagnosis doesn’t stop dementia from progressing; it only delays access to care, information, and support that can improve quality of life,” said christina scicluna, ceo, alzheimer society of canada, in a press release.
when treatment is given early, it cannot stop dementia, but it can slow its decline, allowing one to be more in control over their neurological faculties for longer. it can also give people more time to plan and prepare for their futures so that the burden of the disease feels a little lighter.
still, the widespread stigma towards people with dementia keeps people feeling as though they have to be quiet about any small symptoms that are just developing, while also fostering fear that they will be ignored, negatively treated, or become excluded from their current lives because of the disease.
“dementia is a major health crisis in canada, yet far too many people face it alone,” said scicluna in a press release.
as many as half of the people living with dementia experience loneliness, while 60 per cent experience social isolation.
fighting against dementia stigma to change the narrative
alzheimer’s societies across the country continue to fight against this stigma so that people can feel safer to not only notice and seek help when symptoms begin, but also prepare and educate themselves on what to look out for it they do start to develop dementia.
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programs that focus on education, counselling, support, and community are implemented by these organizations for people already diagnosed and their care partners, and are an important aspect of care in treating alzheimer’s, because it’s not just about slowing progression but also about improving and maintaining quality of life.
this year’s awareness campaign for alzheimer’s awareness month, forget no one, is a shining example of the importance of helping people with dementia and their families, so that no one has to go through the disease alone.
canadians are asked to participate in the campaign by sharing a photo of themselves on social media wearing a forget-me-not pin, using the hashtag # forgetnoone to open up the conversation and let people know that while dementia is scary, early intervention is not. knowing that you’re developing dementia is far better than avoiding it out of fear.
“would you want to know?” scicluna added in the press release. “a quarter of canadians say no, and that’s the stigma we need to end. because knowing means learning, getting help, and finding hope.”
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