Karen Annis felt powerless and abandoned while caring for her husband Gordon during the last decade of his life.
“The system doesn't consider whether or not the caregiver needs help,” Annis told Northern Life. “I represent all the faceless caregivers who often need more support than the victim.”
As her husband became more ill with Alzheimer's disease, Annis had little respite from the full-time job of his daily care.
Even daily errands, such as grocery shopping, became almost insurmountable tasks.
If she left the house with her husband, he could not leave her sight for even a second.
As Gordon's condition worsened, Annis was able to count on the services of a personal support worker, contracted by the Community Care Access Centre, for three hours a week. It was her only time to herself, and had to be spent running the errands she could not get done the rest of the week.
Annis could not depend on her family, who lived in other parts of the country, and did not want to trouble her friends with her personal troubles.
“You don't want to lose the last of your friends by talking about your problems, so you bottle that up,” she said.
The Alzheimer Society Sudbury Manitoulin, offers support services for people with dementia and their caregivers.
Annis said it was the only place where she could talk about her problems openly and work though her own difficulties caring for her husband.
Annis' situation is not unique.
Some 747,000 Canadians are living with a diagnosis of Alzheimer's or a related dementia. By 2031, that number is expected to increase to 1.4 million.
The illness costs the Canadian economy an estimated $33 billion each year, not including millions of hours of unpaid care.
Alzheimer's, the most common form of dementia, is a progressive and degenerative disease that causes thinking and memory to become significantly impaired. There is no cure.
The handful of drugs to treat the disease only help decrease its effects and slow its progress.
At a recent G8 dementia summit, the world's richest countries committed to develop a cure or treatment for dementia by 2025.
Unlike several countries in the G8, Canada does not yet have a national dementia strategy.
Claude Gravelle, NDP MP for Nickel Belt, has sponsored a private member's bill, Bill C-356, to create a national dementia strategy.
The bill, Gravelle said, includes five pillars that would make up the national strategy: research, prevention, early detection, training for health care professionals and support for caregivers.
Gravelle's mother died of Alzheimer's disease in 2003.
“As far as I'm concerned, it's probably the worst disease you can have,” he said. “We need to do something and we need to do something quickly.”
Gravelle's colleague Carol Hughes, NDP MP for Algoma-Manitoulin-Kapuskasing, also has firsthand experience with Alzheimer's disease.
Hughes's sister was diagnosed with the disease at the age of 50.
“I understand what people are going through because I was actually the caregiver for my sister for some time,” Hughes said.
Hughes said the government should change the employment insurance system to recognize caregivers like Annis may need to stay home, and outside the workforce, a bit longer.
Lorraine Leblanc, executive director of Alzheimer Society Sudbury Manitoulin, said organizations like hers need better government support, especially with the expected growth of dementia and its associated costs in Canada.
The Alzheimer Society Sudbury Manitoulin receives around 75 per cent of its funding from the North East Local Health Integration Network (LHIN), but must fundraise the remainder, which amounts to more than $300,000 per year.
“This is a really big challenge that we're faced with,” Leblanc said.