Canadians know way too little about dementia, survey finds

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Advocates are renewing calls for a national dementia strategy as evidence emerges that Canadians are woefully uninformed about the basics of the devastating condition whose numbers are soaring.

"We're not really prepared for what's coming - on an individual or societal level," said Mary Schulz, director of education at the Alzheimer Society of Canada.

With more than 500,000 Canadians living with Alzheimer's and related dementias, and that number expected to double within 20 years, Ms. Schulz said education should be the key component of a strategy. She said it is essential that everyone know the risk factors, the early warning signs and how dementia progresses because dealing with the condition is going to be a daily reality for many baby boomers and their offspring.

Yet, according to a new survey commissioned by the Alzheimer Society, Canadians have surprisingly little knowledge of even the basics of dementia.

For example, one in four people surveyed could not name a single symptom of the degenerative brain illness, while only one in two identified memory loss as a key warning sign. Far fewer respondents could identify other common symptoms such as disorientation, repetitive behaviour and wandering.

"What we see in the survey results is a lot of naiveté," Ms. Schulz said. "You can put in a teacup what a lot of people know."

Ms. Schulz said what surprised her most was that those surveyed - 1,006 respondents aged 45-65 - appeared unprepared to deal with Alzheimer's even though many in that demographic will be called on to be caregivers.

In fact, more than one-third of the randomly polled said they have been personally touched by Alzheimer's. But, in the survey questions, that group proved to be only slightly more informed.

Joan McCormick said that, in 2005, she noticed her newly retired husband Frank, who liked to putter around their property in Coboconk, Ont., sometimes had trouble doing routine tasks like cutting the lawn and watering the plants. One day he even tried to enter the house through the window rather than the door, but they laughed it off.

Then, during a routine medical visit, the doctor said it would be a good idea for Mr. McCormick to undergo testing for dementia. "It was like a stake in my heart," Mrs. McCormick said.

Her own mother had suffered from Alzheimer's, but she wasn't aware of the early warning signs that her husband displayed even though, in retrospect, they seem obvious.

Mr. McCormick was only 60 when he was diagnosed with early-onset Alzheimer's.

Generally speaking, the risk of dementia increases with age. The rate of dementia doubles every five years after 65 - from about 2.5 per cent among 65-year-olds to over 40 per cent in 90-year-olds.

When prompted, most survey respondents could identify age and genetics as risk factors for dementia. But the numbers fell off sharply for other risk factors like having suffered a head injury, a history of depression, heart disease and high blood pressure.

Similarly, those polled - even when prompted - had trouble identifying the symptoms that occur in the latter stages of dementia beyond difficulty recognizing objects and faces and inability to dress and bathe. Those symptoms can include loss of mobility, incontinence and hallucinations.

Alzheimer's is the most common form of dementia, followed by vascular dementia and other conditions like frontotemporal dementia, Lewy body disease and Creutzfeldt-Jakob disease.

Aside from education programs, a dementia strategy would include a series of policies to promote caring for people in the home, support for caregivers, expanding long-term care facilities, promoting prevention and early diagnosis, and increasing investment in research.

Dementia cost the Canadian economy about $15-billion last year, and that number is expected to soar to $153-billion by 2038.

Early warning signs of dementia

Poor long-term memory

Short-term memory loss

Confusion, disorientation

Repetitive behaviour

Wandering, getting lost

Source: Alzheimer Society of Canada