Almost 20% of home caregivers distressed

Nearly all of the people receiving publicly funded home care in Canada also rely on an informal caregiver like a spouse, but one in six of those helpers experiences distress as a result, suggests a new report.

The Canadian Institute for Health Information released its study on supporting informal caregivers on Thursday. The report looks at more than 130,000 seniors who received publicly funded long-term home care in 2007 and 2008. 

Of these home-care clients, 98 per cent relied on an informal caregiver such as a spouse, an adult child, a friend or a neighbour. These caregivers provided emotional support as well as help with activities like shopping, transportation, managing medications, bathing, dressing and feeding, the report's authors found.

About 55 per cent of seniors in the study, and three-quarters of those who were married, received informal care from a spouse.

Among those who were unmarried, almost 75 per cent received care from an adult child.

Unmarried seniors were nearly twice as likely to be in residential care compared to their married counterparts, highlighting the key role of spouses as caregivers, the report said. 

''It's not hard work, but it's hard on the nerves.'' —Elaine Villeneuve

Spouses who were caregivers were twice as likely to experience distress as other family members who performed that role, such as adult children.

Most caregivers appear to be coping well, but it's important to identify caregivers who are at risk of burnout, since it can result in the senior being institutionalized, said Nancy White, manager of home and continuing-care development at CIHI.

Elaine Villeneuve, 66, of Maxville, Ont., between Ottawa and Cornwall, knows how stressful caring for a spouse can be. She has been caring for her husband, Noble, since his stroke nearly nine years ago, which required him to spend four months in hospital undergoing rehabilitation.

Noble Villeneuve, 72, a former member of Parliament, can't speak and is paralyzed on the right side, though mentally, he is in good condition, she said.

"It's not hard work, but it's hard on the nerves," said Villeneuve, who was recently given a certificate recognizing her dedication to caregiving.

Stress lesson

Villeneuve receives 10 hours of home care a week for her husband on top of hour-long visits every morning to get him up and showered. She also turns to their four daughters and son to help out when she goes to church or to occasional appointments.

Villeneuve said she's thankful that her health and patience allow her to take care of her husband at home but that since she has to be with him all the time, her own works gets left behind.

The couple continue to play cribbage most days and go out with the help of Noble Villeneuve's wheelchair. In July, they enjoyed the first wedding of a grandchild.

Villeneuve said that when she was younger, she often heard people talk about stress but didn't understand what they were talking out — until her husband's stroke.

Seeking help

It isn't unusual for spouses to experience distress when providing informal care to their partner, in part since it's a 24-hour role, said Kimberly Peterson, vice-president of client services with the Champlain Community Care Access Centre in Ottawa.

"Often, families want to help; they just don't know how," Peterson said. "The caregiver wants help but doesn't know how to ask."

Peterson said her organization supports one program in Eastern Kenyon in eastern Ontario that helps those who care for Alzheimer's sufferers specifically.

The program counsels informal caregivers on how to take on responsibilities like doing the banking and helps friends and family devise a plan to support the informal caregiver in order to offer respite and fight isolation.

Long-term care for dementia

A second study also released Thursday by the institute looked at factors behind institutionalizing seniors with dementia.

One in five seniors living at home with home care had a diagnosis of Alzheimer's disease or dementia. Of these, 17 per cent were managing at home with high levels of impairment in basic mental and physical functions.

Three in five seniors in a residential care facility — a nursing or long-term care home — had Alzheimer's or dementia.

The study said people with Alzheimer's were more likely to be institutionalized if they had exhibited one or more of the following:

• Wandering.
• A recent hospital admission.
• Resisting care.
• Physically abusive behaviour.
• Being unmarried.
• Having a psychiatric diagnosis.
• Being on a psychotropic medication.

In 2008, nearly 500,000 Canadians suffered from dementia, which represents 1.5 per cent of the population, according to the Alzheimer Society of Canada.