“My husband is a greeter at our local church. But people ask me all the time, ‘How can he do that? He has Alzheimer’s.’”
These compelling words are from Cathy, 53, who has been caring for her husband Boz for the past three years since he was diagnosed with Alzheimer’s disease.
It’s this kind of negative attitude that the Alzheimer Society wants to change with its new #StillHere campaign, launched for Alzheimer Awareness Month in January.
Life doesn’t end when Alzheimer’s begins. People living with dementia can continue to participate in life and contribute to their communities in their own way, even as the disease progresses, officials say.
Yet, that’s not the view of most Canadians who, according to a new Nanos survey, are divided about whether someone with dementia can live well. While women were slightly more positive than men, the survey found 47 per cent of respondents aged 18 and older disagree, compared with the same percentage who agree.
“Words and actions are powerful and can change the story of dementia. That’s the goal of our campaign, to dispel the myths around what it means to live with dementia and encourage all of us to see the person beyond the condition,” said Mimi Lowi-Young, CEO at the Alzheimer Society of Canada, in a press release.
The Nanos omnibus survey gauged Canadians’ knowledge about Alzheimer’s disease and other dementia. One thousand Canadians aged 18 years and older were polled with an oversample of 500 women, 40 years and older.
Recognizing that a diagnosis of dementia doesn’t rob someone of their individuality or their feelings goes a long way towards respecting and engaging people with this disease and preserving their identity, officials say.
Pia Kontos, a senior scientist at the Toronto Rehabilitation Institute-University Health Network who has spent most of her career challenging perceptions of dementia, agrees.
“Our cognitive abilities alone do not define us. People with dementia can continue to engage with the world in many other meaningful ways. And supporting their dignity and worth, improves their well-being and quality of life,” she said in a press release.
Learn how to get involved with the #StillHere campaign at www.alzheimer.ca/stillhere.
The website provides a 30-second video, an online quiz to test basic knowledge and assumptions about dementia, personal stories from people living with dementia and practical advice on how to support people with this disease or support the local Alzheimer Society
Quick facts
About 747,000 Canadians are living with Alzheimer’s disease and other dementia today, a number expected to increase to 1.4 million in the next 15 years.
Women represent 72 per cent of Canadians living with Alzheimer’s.
For every person with the disease, two or more family members provide care. Women account for 70 per cent of family caregivers.
In 2011 alone, caregivers spent 444 million unpaid hours providing care. That’s the equivalent of $11 billion in lost income or 230,000 full-time jobs.
Dementia costs the Canadian economy $33 billion per year. By 2040, that figure will skyrocket to $293 billion per year.
Age is the biggest risk factor for dementia. After age 65, the risk doubles every five years. But dementia also occurs in people in their 50s, 40s and even in their 30s.
Dementia is progressive. Progression varies greatly from person to person and can last between eight to 10 years – or even longer.
Dementia is fatal. Its causes are not fully known, and there is still no cure or effective treatment to prevent or reverse the disease.
Dementia is a collective term to describe brain disorders whose symptoms include: decline in memory, reasoning and communication skills; gradual loss in ability to carry out day-to-day activities; and changes in personality and behaviour.
