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Peter Power/The Globe and Mail

Nearly 40 per cent of family members caring for a loved one with dementia suffer from such signs of distress as depression, rage and an inability to cope, new research reveals.

The data, published by the Canadian Institute for Health Information, also show that one in five people getting home-care services suffer from Alzheimer's disease and other forms of dementia.

Nancy White, manager of home and continuing-care development at CIHI, said that seniors with severe mental and physical impairments do not automatically end up in institutional care, as many believe. Conversely, there are a good number of people who are relatively spry, physically or mentally, living in long-term care facilities.

"There are some key factors that predict when a person will move" from home to a long-term care facility, Ms. White said. They include wandering, physically abusive behaviour (both common among Alzheimer's patients) and a recent hospital stay.

People who are not married or are widowed are also twice as likely to be institutionalized, particularly when they show signs of cognitive decline, according to the research. There are more than two million informal caregivers in Canada, most of them spouses and adult children of frail seniors.

CIHI published two new studies on Thursday, entitled Supporting Informal Caregivers: The Heart of Home Care and Caring for Seniors With Alzheimer's Disease and Other Forms of Dementia.

The findings are based on data from 130,000 seniors and their caregivers. All the patients received publicly funded long-term home care in 2007-08, and most had complex health conditions.

Virtually all the home-care clients - 98 per cent - also relied on informal caregivers to provide emotional support along with assistance in daily living activities, including shopping, transportation, bathing, dressing, feeding, and changing incontinence pads.

"The message here is that if we're going to help seniors stay in the community - and we should - then we critically have to look at the needs of caregivers," said Linda Jackson, executive director of community and ambulatory programs at Baycrest, a Toronto health-care facility that specializes in care of the elderly.

The new data show that one in six caregivers report suffering distress; that number increases depending on the patient's symptoms. Among those caring for a person with depression, for example, the rate is 34 per cent, and it rises to 52 per cent for those who endure abusive behaviour.

"This validates what those of us in the field see every day," Ms. Jackson said. But she added that the numbers probably underestimate the real situation because the study does not include those not receiving formal home care; and many people, particularly female spouses, provide care stoically and are reluctant to admit being overwhelmed.

Ms. Jackson said that a lot of the problems experienced by caregivers, from depression to burnout, could be avoided or attenuated with early intervention and by ensuring that caregivers get evaluated and offered help, just as home-care patients do. "Every caregiver needs help, so we need to make them part of the equation, not an afterthought," she said.

In recent years, a number of programs have sprung up that cater to frail seniors living in the community - particularly those with dementia - and their caregivers. They include adult day care, respite care and support groups, in person and online. But Ms. Jackson said caregivers do not always know how to find appropriate services, and are sometimes reluctant to use them unless specifically directed by a physician, home-care nurse or social worker.

An estimated 500,000 Canadians are living with Alzheimer's disease or related dementias.