As the number of seniors living with dementia rises, a new report from the Canadian Institute for Health Information looks at the impact on unpaid caregivers.

It’s estimated that 402,000 seniors in Canada have dementia, two thirds of them women. Most of them live at home, thanks to help from family, friends and neighbours. Of those unpaid caregivers, 45 per cent experience distress.

Dementia, which is caused by various injuries and brain diseases including Alzheimer’s disease, often presents unique challenges for caregivers. The disease causes a progressive deterioration of cognitive abilities that makes it difficult for people to carry out activities like bathing, dressing or eating without assistance. They may also suffer from memory loss, judgment problems and mood changes.

"We’re already in a state of crisis," Alzheimer Society of Canada chief executive Pauline Tardif, whose mother suffers from dementia, told CTV News. "In fact, this is what the report confirms."

From 2002 to 2013, the number of seniors living with the disease increased by 83 per cent, according to the Public Health Agency of Canada which helped with the report.

In 2016, unpaid caregivers spent an estimated $1.4 billion on out-of-pocket costs. They devoted an average of 26 hours a week to providing care, compared with 17 hours for caregivers of other seniors.

Ajiitha Anand said that her mother, Jeyanthy, suffered from headaches, back pain and a lack of sleep as the primary caregiver of her 81-year-old grandmother Thangammah, who has advancing dementia.

"She didn’t have any personal time," Anand said. "She lost who she was in the process."

Tardif says that the distress experienced by unpaid caregivers is frequently compounded by too few hours of government-provided care and long wait times for nursing homes.

"There are not a lot of options out there," she said.

After more than a year of being cared for at home, Thangammah is now at a long-term care facility in east Toronto.

"After sending her to long-term care, my mother got part of herself back," Anand said. "There needs to be more caregiving and more care to the caregivers."

Kathleen Morris, vice president of research and analysis at CIHI, said the latest numbers clearly show that dementia is a widespread issue in Canada. 

“Helping people manage dementia in the community is really a policy issue that we need to deal with,” Morris told CTV News Channel on Tuesday.

She said that many family doctors have also reported struggling to help their patients manage dementia.

Last year, Parliament passed Bill C-233, which aims to implement a national dementia strategy. Morris said work on that strategy is underway, and should give caregivers and doctors more resources.

For more information on supports for caregivers, check out the following resources:

With files from CTV’s medical affairs specialist Avis Favaro and producer Elizabeth St. Philip