by Lorna Hillman
Executive Director of the Family Caregivers' Network Society, Victoria BC
The popular modern myth that families do not look after their elderly parents and other relatives is just that - a myth. In fact, the prevalence of family caregiving in this century is unprecedented in history, due to the fact that we can expect to have third, fourth and even fifth generations still alive; daughters and sons in this century can expect their parents to live well beyond the age of 50 years. Add to this a declining birth rate and it doesn't take a rocket scientist to realize what the future trends will be.
Millions of family caregivers - the bulk of them middle-aged and older women - are confronted with the responsibility of helping their disabled spouses, parents, parents in-law and other elderly relatives.
The proportion of seniors in the Greater Victoria area is what population experts say Canada's demographic profile will look like in another 20 years. The Victoria experience gives researchers and policy makers a chance to study various seniors-related issues, including family caregiving
The Family Caregivers' Network Society (FCN) in Victoria, British Columbia was established as a charitable society in 1989 to provide emotional support, information and representation for family caregivers in the Capital Regional District (southern Vancouver Island and Gulf Islands.) It was the first of its kind in Canada.
The FCN was founded by family caregivers, but it was a social worker in a local long term care facility who first identified the caregiver issue. She began to notice that when people brought their loved ones into the facility for permanent placement, the primary caregiver, usually a spouse (wife) or an adult child (daughter) was in pretty bad shape - basically worn out. Many were quite ill once placement occurred; often the elderly caregiving spouse died soon after.
The seeds of the Family Caregivers' Network were planted in 1983 when members of several community agencies identified a need for a free-standing caregiver support group that wasn't based on a particular disease or affiliated with a care facility. The idea first came up in conjunction with a major conference in Victoria on elder abuse. The Network initiative did not catch on; perhaps of the negative connotation of being associated with that issue.
However, in 1986 a well-publicized afternoon with a speaker addressing caregiver burn-out - "I Love You, But I'm Exhausted" - attracted many people who had not before thought of themselves before as family caregivers. As a result of that meeting, 30 people signed up for support groups. Six groups were formed, determined by the geographical location of participants. A newsletter started by volunteers, along with regular meetings of support group facilitators, kept the groups together in a loosely organized network.
In 1989, the Network formed a Board of Directors (60% of whom must be or have been caregivers), became incorporated, received funding from both federal and provincial governments, hired some staff, and opened an office.
Today, the FCN has two staff people and provides eight community-based caregiver support groups, and referral to eleven disease-specific/facility-based support groups. The Network also provides the most up-to-date information on and referral to health care and other services in the region; a bi-monthly newsletter (Network News); public education events; a resource lending library; and addresses issues of concern to family caregivers within the health care system. Approximately 1,000 people a year use one or more of the Network's services; the newsletter's distribution is 2,000.
A big shift in the services of the FCN occurred in 1995 when the University of Victoria's Centre on Aging and the Caregivers' Association of British Columbia produced the first-ever caregiver research report in British Columbia.
The report informed the Network that a sizeable portion of family caregivers are between the ages of 45 and 64, once again predominantly women caring for elderly relatives. This group was larger than the over-65 caregivers.
When the Network started out, its services were geared mainly to the elderly caregiver. Shifting services to also meet the needs of 45ö64 age group meant not only making support groups more accessible, but also the public education sessions and the library. Now support group meetings are held in the evening as well as the daytime; there is every attempt to have public education sessions also available in the evening; and alternate arrangements can be made if someone can only come to the library after work hours.
Issues of concern to caregivers in this age group have also brought changes to the Network's advocacy strategies. Although coping, preventing burn-out and dealing with the "system" apply to all family caregivers, it is much more complex for the 45 to 64-year-olds, many of whom are also employed and/or are still raising families. Family caregiving in the workplace has picked up where the child daycare movement has been successful. Employers now need to take a close look at employee absenteeism and make allowances for time off to take mom to a doctor's appointment or to fill in when the home support worker suddenly can't show up and a meal needs to be made. British Columbia's Employment Standards Act now covers Family Responsibility Leave (unpaid), which includes responsibilities to any member of a person's family or chosen family. Although this is a good start, there is still a long way to go.
The 1995 report also found that many people had either reduced their work time or left the work force to caregive full time. As we know, the majority of caregivers are women, so the negative impact on their financial status when retirement age sets in will be tremendous.
However, probably the single most important issue the Network promotes in everything it does is that family caregivers are partners within the formal health care system. Health care professionals need to recognize this and treat the family caregiver as part of the care team. If families across Canada were not carrying out their responsibilities for ailing loved ones at home, the health care system as we know it could not function for even half a day!
On this note, family caregivers themselves need to recognize their role within the formal health care system and demand their rights to be treated with respect, to have ready access to information on the health care system and services available, to be consulted in the care of their loved one, and to be able to access respite services to get a break periodically.
