Dementia sufferers mostly cared for at home by family members, many of them distressed, study finds

Almost half of dementia patient caregivers experience distress from their work and they put in more hours every week than people who care for seniors without the disease, new research suggests.

Number of seniors with disease jumped 83% from 2002 to 2013

There are roughly 400,000 Canadian seniors with dementia and two-thirds of them live in the community, outside of long term care facilities. (Laurie Fagan)

"Life as we knew it changed completely."

Sunny Delaney-Clark's husband of 25 years was diagnosed with a form of dementia in late 2013.

"Some days he'd be fine but often he would just leave the house and I wouldn't know where he is. I would drive around the city to try to find him. He was quite familiar with the downtown core. That process would take six hours by the time I could bring him home," Delaney-Clark told CBC News.

"He was depressed and he wanted to take his own life."

And she says those tasked with caring for people with dementia, also suffer.

Sunny Delaney-Clark cares for her husband of 25 years. He was diagnosed with dementia in late 2013. Delaney-Clark says she sometimes has to leave the house for three hours to deal with the stress of providing that care. (Colleen Underwood/CBC)

"I have been diagnosed as someone who is suffering PTSD. That's how significant it is. You wake up and you don't know who you have with you. He doesn't know who he is," Delaney-Clark said.

"Some days I have to go outside the home for three hours before I can come back in because he becomes so unmanageable and you get frightened."

And fresh research suggests Delaney-Clark is far from alone.

Almost half of dementia patient caregivers experience distress from their work and they put in more hours every week than people who care for seniors without the disease, a new report has found.

"Those caregivers put in an average of 26 hours a week, versus 17 hours for people caring for people with other chronic illnesses but not dementia," says Tracy Johnson.

Johnson is the director of health systems, analysis and emerging issues for the Canadian Institute for Health Information and says a new study, Dementia in Canada, looks at the challenges caregivers face in dealing with a disease that is on the rise.

The institute says the number of seniors with dementia has jumped 83 per cent between 2002 and 2013. There are roughly 400,000 Canadian seniors with dementia and about two-thirds of them live in the community, outside of long term care facilities.

Tracy Johnson of the Canadian Institute for Health Information says caregivers of dementia patients face greater distress than caregivers of other seniors without the disease. (Submitted by Tracy Johnson/Pinpoint National Photography)

Johnson says caregivers, who are usually family members or spouses, report their role can be stressful and there are triggers to feeling distressed.

"More than 20 hours of care a week, when the person has increased cognitive impairment and changes in their mood and behaviour, do things like wander, or they are angry or depressed," she said.

Samantha Reay, a social worker with the Alzheimer Society of Calgary, says care workers can ease their challenges, a little, by accessing supports and resources early on in the disease's progression.

"There are other supports out in the community that you can turn to as well," Reay said.

"Neighbours are really good. One family talked to local business owners because their dad still really enjoyed going out into the community, but he may forget to pay for something. Home care as well. It's important to get these resources and supports in early so they become part of the routine, and there is not resistance afterwards."

Social worker Samantha Reay says increasing funding for adult day programs, as one example, can benefit everyone involved. (CBC)

She says increased funding for programs like adult day programs would help everyone involved.

"Those are really great respites for caregivers and they get the person with the diagnosis engaged and active, but being able to go more than twice a week would be really beneficial for not just the care partner, but for the person with the diagnosis," Reay said.

Meanwhile, Johnson says with dementia on the rise, it's an issue we are going to have to face head on.

"This is a life-limiting disease that just gets progressively worse, therefore if you are going to stay in the community it increases the amount of care you are going to need."

With files from CBC's Colleen Underwood