Author: Patricia Nicholson

A new report from the Canadian Institute for Health Information (CIHI) highlights the importance of informal caregivers – family and friends who help look after others – to many older adults, as well as to Canada’s health-care system. But it also notes the high levels of distress among caregivers, and that it is essential to ensure that caregivers’ needs are also met.

Social worker Linda Jackson, executive director of community and ambulatory programs at Baycrest in Toronto, says it’s important to be proactive about providing resources for caregivers.

‘The more supports that are in place for somebody, the longer and more successful that caregiving can be,’ she says.

Many people prefer to continue to live in their own homes as they get older. To continue living in the community, home care is often required. Home care can include a wide range of services, such as nursing care, social work, physiotherapy and maintaining medical equipment in the home. However, informal care is almost always a vital part of this scenario.

CIHI studied a group of 131,000 adults ages 65 and older, who lived in the community and also received publicly funded long-term home care. Only 2 per cent of this group was able to manage without an informal caregiver in addition to the structured home care they received.

The vast majority of these caregivers are family members – usually a spouse, adult child or child-in-law. For married home care clients, their spouse was the primary caregiver in 75 per cent of cases. A child or child-in-law was the caregiver for another 20 per cent of married clients.

In many cases, caring for an ill spouse can mean profound changes to spousal roles, Jackson says. If can often result in isolation as normal activities decline and circles of support become more distant.

For unmarried, divorced or widowed home care clients, a child or child-in-law was the primary caregiver in 75 per cent of cases. Other relatives, friends or neighbours acting as primary caregivers was more common in this group, with almost 15 per cent receiving care from another relative and almost 10 per cent receiving care from a friend or neighbour.

Almost all informal caregivers provided emotional support and help with activities such as preparing meals, shopping, transportation and housework. But almost half also provided assistance with basic daily activities such as bathing.

The report underscores the potential stress associated with the caregiver role: in about 16 per cent of cases, the role results in distress for the caregiver.

Distress was considerably more common among those who spent more than 21 hours per week caring for someone (28 per cent), those caring for depressed seniors (32 per cent), and those caring for people with dementia or Alzheimer’s disease (37 per cent). More than half (52 per cent) of people caring for seniors who behaved aggressively or abusively experienced distress.

‘Caregivers don’t usually identify themselves as the person in need of support,’ Jackson says. In fact, they often don’t even think of themselves as caregivers. ‘They’re often calling for concrete information on services for the person they’re caring for. Rarely do we get a call from somebody who says, help, I need some support for myself in the role of caregiver.’

That’s why it’s imperative to have strategies in place to make caring for caregivers a standard part of service.

‘That’s what’s good about this survey,’ Jackson says. ‘Now there are tools in place to actually evaluate how the caregiver is doing. Up until this point, that person wasn’t viewed as a patient of home care, or a patient of the hospital or a client of services – it’s their loved one that was.’

Many caregivers are startled to be asked about their role and their needs, beyond the needs of the person receiving care.

‘Often there’s quite an emotional reaction,’ Jackson says.

Caregiver distress not only affects the caregiver, but also the older adult and even the health-care system. A distressed caregiver may be unable to continue to offer assistance, which may result in the older adult requiring more health-care services, being hospitalized or entering residential care. CIHI reports that the economic value of the more than 2 million informal caregivers in Canada may be more than $25 billion.

Community support services can include case management, social work, meals on wheels, transportation services, respite (someone to sit in for the caregiver for an hour or an afternoon or a day) and recreation services.

Local agencies, such as Community Care Access Centres in Ontario, and family doctors can be good starting points for finding out about available resources and getting support.

Jackson notes that even something as simple as coaching caregivers on how to ask family and friends to pitch in can be helpful. Support groups specifically for spouses or children who are caring for a spouse or parent are also surprisingly worthwhile.

‘We find that people accessing our spousal support groups and groups for adult children find them remarkably helpful, and most of these people don’t actually come in thinking they’re going to be helpful at all. They’re not people that normally go to support groups,’ she says.

But there are benefits to talking to someone else who is in a similar situation. It can help to normalize feelings when other caregivers acknowledge that they sometimes feel angry or frightened or alone, too.

‘It can be incredibly powerful coming from another person,’ Jackson says.

The report highlights the importance of informal care, and the need to support caregivers. Home care programs are developing tools to assess whether informal caregivers are at risk, and ways to help.

‘What’s interesting about the report is anybody who is in the report is already receiving home care services,’ Jackson says. ‘An important other element is that many people who are caregivers don’t have any supports in place.’

There are frequently no services in place for either the patient or the caregiver at the point when somebody begins caregiving. And caregiving is rarely a short-term role.

Jackson says early identification of caregivers and their needs is one of the key points of the report. She notes that many people will have contact with caregivers even before home care may be involved. Family doctors could have a critical role in identifying and starting to talk about the needs of the caregiver.

The report was published on Aug. 26, 2010 and is available from CIHI’s website.