Two million Canadians live this slow-motion tragedy daily. Their families watch with a mixture of guilt, anguish and helplessness. The rest of society averts its eyes.

Informal caregivers — most of whom are seniors — are the beasts of burden of Canada’s health-care system. They provide $25 million a year in unpaid labour, but they often destroy themselves doing it.

Motivated by love, duty or compassion, they seldom complain. And those who try to speak out for them — relatives, neighbours, a few home care organizations and a handful of doctors — are ignored.

Now a major government-funded agency is sounding the alarm.

The Canadian Institute for Health Information (CIHI) issued a report in late August called Supporting Informal Caregivers: The Heart of Home Care. It showed that one in six people caring for ailing seniors at home is in distress. The number shoots up to one in three if the senior has cognitive problems such as Alzheimer’s disease, one in two if the senior is aggressive or abusive.

These are the first authoritative figures on the problem. Up to now, advocates have relied on estimates or anecdotal evidence.

At a time when Ontario is encouraging seniors to stay in their homes for as a long as possible, it is important to know who is providing the support they need.

If a couple is married, the primary caregiver is the spouse. If not, it is typically an adult child. If neither is available, a relative, friend or neighbour takes on the role.

As the demands of caring for the senior increase, so does the toll on the caregiver, resulting in physical exhaustion, depression, anger and conflict with other relatives and friends. With more support, they could get out, meet friends, go shopping, see their grandchildren. But they aren’t getting it. Many don’t even know where to look.

When Dalton McGuinty became premier in 2003, he promised Ontarians, “If you require care, want it in your home and that care costs less than sending you to a hospital or nursing home, we will make sure you get it.”

That pledge must be kept. Other changes are needed as well.

• Workplaces will have to allow employees the flexibility to help parents or friends experiencing health problems.

• Ottawa’s compassionate care leave program will have to be modified. It allows a worker to claim up to six weeks of employment insurance when caring for a gravely ill relative or friend.

But it is seldom used because many Canadians find the idea of providing a doctor’s certificate, stating that the person they want to be with faces a “significant risk of death,” repugnant.

• The Canada Pension Plan will have to be adjusted. It allows workers to take time off to care for young children without jeopardizing their retirement benefits. A similar provision is needed for workers who do the same for aging parents.

• And the province will have to make it easier for seniors to navigate the health-care system so they know where to go for help.

Now is the time. We know that Canada’s population is aging. We know the incidence of dementia is increasing. And we know people want to remain independent for as long as possible.

That requires home care. It’s part of the health-care system now, as much as doctors, hospitals, drugs and therapy. It has to be funded properly, delivered when it is needed and include support for both the patient and caregiver.

Who will pay? All of us, either through our taxes or through lost earnings, family stress and caregiver burnout.

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