In 1896, a Swedish scientist posited that human emissions of greenhouse gases could induce climate change. His hypothesis was based on the assumption that carbon dioxide released through coal burning increased the earth’s temperature. The theory was hotly disputed by fellow scientists who argued the human race was too puny to affect powerful climate cycles. The public was unmoved.
In 2006, Al Gore found a more receptive audience for An Inconvenient Truth, as the global warming documentary generated enough interest to gross $50M in worldwide sales. While hardly a blockbuster by feature film standards, its top 10 placing in the documentary category indicated that as a barometer of public awareness, the needle had moved dramatically. Still, it wasn’t until September 2013, that the international scientific community, after years of denial and debate, concluded that in fact, 95% of global warming is man-made.
Facebook, a very different man-made phenomenon, was launched in 2004. 8 years later, it boasted over a billion users. These examples suggest that penetrating collective consciousness requires either a long time, or a lot of people.
How then to account for why family caregiving (hereafter referred to as caregiving), a practice as old as man, currently performed by an estimated 8 million Canadians, has not made its way into the mainstream of public consciousness? If the threat of dire consequences is a missing ingredient—some consider social networking as grave a threat as is global warming—the added effect of longer lives and lower birth rates has yet to nudge caregiving into the realm of public discourse.
Is this simply a benign oversight, or is there more associated with the term ‘caregiver’ than is evident at first glance? Labels can be highly charged and reflect profound and usually positive changes in public perception. Use of the word ‘disabled’ versus ‘handicapped’ for example, in combination with accessibility legislation, promotes inclusiveness and has elevated public awareness of physical disabilities, while ‘older adult’, having superseded pejorative phrases such as ‘the aged’ or ‘the elderly’, suggests a progressive shift in attitude toward ageism. What then, has kept ‘caregiver’, a label completely without negative connotation, from becoming a household word?
One theory has it that the term ‘caregiver’ has not become part of the vernacular simply because adults caring for aging parents or spouses regard themselves as they always have: as sons, daughters, husbands or wives. Assuming additional responsibility on behalf of a loved one is seen by some as an extension of a long-standing relationship, rather than as a sea change necessitating the re-labeling or redefinition of roles.
Susan Steels, a Clinical Leader of the Geriatric Outreach Team at Southlake Regional Health Centre in Newmarket, Ontario, agrees that caregiving is not fully mainstream, but suggests that forces underlying family relations are complex and highly impactful when illness associated with aging is imposed on the family unit. “I think using the title, caregiver, you are accepting a change in the dynamic of the relationship between an adult caregiver and parent,” she says. “You see your parent as someone who takes care of you. To have to take care of your parent is to accept them as dependent on you.”
This suggests that caregiving, far beyond a cosmetic change in designation, is viewed as a complete recalibration of a long-term relationship. Many older parents do not want a child to do things for them. “It’s difficult for both to accept the power shift from parent to child,” says Ms. Steels. “It’s a badge of honour for a 90 year old to be able to care for themselves and it’s seen as a failure on some level, for him or her to have to rely on a child.” To avoid this threat, given the means to choose between a paid caregiver and a family member, many care receivers would prefer the former.
Pride of place in the community can be a further impediment to accepting the caregiving label. Even when accepting the need of a caregiver, some older adults understand that they are no longer autonomous and yet, for appearance sake, reject the label to avoid publicly acknowledging their loss of autonomy.
While many caregivers readily embrace their new responsibilities, some may be inclined to reject both the label and the role. When assessing a frail senior for example, Community Services will usually want to inform the nearest relative or presumed caregiver. In some cases, the nearest relative is reluctant to assume the role, while others may reject it outright. According to Ms. Steels, the weight of responsibility can be a major deterrent. “Caregiving brings with it a moral and ethical responsibility and if things do not go well, the caregiver feels they are responsible for a bad outcome. When caregiving is shared among siblings,” she adds, “the primary caregiver needs to assume responsibility for communications and key decisions, or expects to, while siblings may not defer to the primary caregiver and blame them if things go wrong.”
Accepting caregiving (and care receiving) as a life passage poses a significant psychological hurdle at the family level and tends to remain there—within the family. In other words, although caregiving as a practice is widespread, in many cases, it remains a private matter. This both stymies mainstream awareness and to the detriment of all concerned, limits knowledge and utilization of caregiving resources. “Caregiving, [as both need and label] is acceptable once both parties have grieved the loss of their long term relationship and accepted the new regime,” concludes Ms. Steels. “Once the designation has been accepted, the caregiver is more responsive to resources directed at caregivers.”
If caregiving is experienced as a relationship-altering event that needs to be grieved, a fraying of the intricate strands of the family dynamic, it is little wonder that it remains on the fringes of the mainstream. Denial however, is an unsustainable luxury.
Unpaid caregivers are often cited as the backbone of the health care system, contributing funds, filling gaps and performing tasks which would otherwise default to overburdened health care providers. Caregiving in Canada requires a delicate balance between the limitations of health care funding and the availability of caregivers to pick up the slack. Those caring for a parent, typically the largest group, tend to range in age from 45 to 64. Based on Statistics Canada projections, the growth rate of that population segment between 2010 and 2031 is estimated at around 8%. In 2010, Canadians aged 65 or over constituted 14% of the population and consumed 44% of health care costs. That segment’s projected growth rate between 2010 and 2031 is estimated at 100%, or 12½ times that of the caregiving population. Extrapolating from these projections suggests that not only would public health care as we know it be financially unsustainable, but those indispensable, gap filling caregivers, so vital to the health care system, may be far too few in number to compensate.
If threats such as catastrophic weather events stemming from the long term effects of global warming, or the risk of virtual experience displacing human contact through social networking presage assimilation into the mainstream, this imminent and very real threat to the health care of the Boomer cohort may ultimately provide the tipping point.