Family-support networks provided an estimated $3.9 billion worth of care in 2006 alone, but without support those networks are at risk of falling apart, the Mental Health Commission of Canada says.
"What is happening today is that we have people looking after people with mental illness and it is impacting their ability to go to work on a daily basis and at the end of the day it impacts their own mental health," said Louise Bradley, the president of the commission.
"It has a humanistic and economic fallout."
The commission is releasing guidelines on how to provide better back-up for those caring for relatives with mental illness.
Along with an analysis of the existing system, there are 41 suggestions for improvements being presented at a mental health care conference in Montreal.
Mental illness needs to be considered in the same vein as other health problems, Bradley said.
"If I'm at home caring for my mother that has cancer, that is more acceptable and people understand it in a way that is far different from saying I'm home because my mother is unable to get out of bed because she had an acute episode of major depression," Bradley said.
"The stigma associated with that minimizes the impact to the person with mental illness and the caregiver as well. What we're trying to do is say look, this is no different."
The guidelines are a follow up to the commission's release last year of its national mental health strategy, meant to serve as a blueprint for how to recognize and treat mental illness more effectively.
Recognizing that caregivers are an integral part of that is an essential first step, said Clem Martini, a University of Calgary professor who was involved in creating the caregiver guidelines.
"They are important to acknowledge how much care goes on at the family level. Right now it is invisible," he said.
A 2002 Health Canada survey found that two per cent of Canadians say they provide care to a family member, friend or neighbour living with mental illness.
More than 70 per cent of the informal or family caregivers included in the study were women, and about six in 10 were employed, in addition to providing care.
Half of those said their caregiving responsibilities were affecting their jobs and most reported some trouble dealing with their own finances and mental health as a result.
It's a situation familiar to Martini. His family has a history of mental illness and he has spent years caring for a brother with schizophrenia. The two wrote a book together chronicling the experience.
Martini said in helping his brother, he was often sidelined by doctors because he wasn't the one under care.
"There are times when I have recognized my brother's symptoms and cannot act upon it and sometimes am not treated as an advocate but as an adversary," he said.
"That's got to be changed."
Recommendations in the report include ensuring telephone and web resources for rural Canadians, as well as re-examining the financial support system for caregivers provided by all levels of government.
It also calls on caregivers to be more formally considered by the medical professionals handling their relatives' care and suggests the health care system needs better training and resources to ensure that happens.
Martini said too many people are struggling as they try to provide health care at the family level.
It has potentially terrible consequences, he said.
"If you are the family caregiver and a suicide happens in your family, that's a terrible outcome right away but has repercussions forever," he said.
"The sense that you failed, the sense that you are inadequate, the sense that you didn't know what you were doing — all of that comes back to haunt you."