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Published on: May 4, 2018
by Women’s Brain Health Initiative:
Worldwide, it is estimated that nearly 47 million people are living with dementia and this number will almost double every 20 years, reaching 75 million in 2030 and 131.5 million in 2050. Individuals with dementia generally require high levels of care, most of which is provided by informal or family caregivers.
In Canada, nearly half of Canadians (46%) aged 15 years and older or 13 million Canadians have provided some type of unpaid care to a family member or friend with a long-term health condition, disability or aging-related need, according to a 2012 Statistics Canada Report. A 2015 report published by the American Association of Retired Persons (AARP), in collaboration with the National Alliance for Caregiving, found that approximately 34.2 million Americans had provided unpaid care to an adult aged 50 or older in the prior 12 months, which is 14.3% of the U.S. population. Since many caregivers do not self-identify as such, but view themselves as supportive individuals, it is likely that these figures are understated.
Often referred to as the “invisible second patients,” family caregivers are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity, as well as social isolation, physical ill-health, and financial hardship.
As the population continues to age, the number of unpaid caregivers – as well as the physical, mental, emotional, and financial strains experienced by them – will only increase.
The Gender Gap
On average, women are caregivers more often than men – although in the millennial cohort (people between the ages of 18 and 34) men and women are equally as likely to be caregivers, says C. Grace Whiting, President and Chief Executive Officer at the National Alliance for Caregiving in the U.S. The type of care that women provide to loved ones is typically different than the care provided by their male counterparts.
Dr. Janice Keefe, a Professor in the Department of Family Studies and Gerontology at Mount Saint Vincent University, and Director of the Nova Scotia Centre on Aging, notes that women “tend to provide care that’s more intensive and that may result in greater levels of stress.” While both men and women may assist with more “instrumental aspects of daily living” (such as helping with transportation, yard work, and banking), women are more likely to provide “personal care” (such as helping with bathing, medication, grooming, and washing). “These tend to be more personalized and more stressful,” says Dr. Keefe.
Research suggests that when women act as caregivers, they may spend as much as 50% more time providing care than men. Women are estimated to provide informal Alzheimer’s disease care worth 20 times the care provided by men across the entire Baby Boom generation.
How Caregiving Impacts Paid Work
More than six million people – or 35% of the Canadian workforce – provide unpaid, informal care while balancing job responsibilities, according to a 2015 report published by the Employer Panel for Caregivers, entitled “When Work and Caregiving Collide – How Employers Can Support Their Employees Who Are Caregivers.” In the U.S. context, “most caregivers are working,” says Whiting. The AARP/National Alliance for Caregiving reported that six out of ten caregivers in the U.S. worked at some point within the 12 months preceding the survey and nearly 60% of those individuals are employed full time. Such caregivers experience more interruptions at work, lower productivity, and are frequently late or absent. They may be less able to work overtime, travel for work, or take advantage of career-advancing opportunities such as professional development.
Since women are more likely than men to assume the role of caregivers – and also have been found to spend more hours per week caregiving than men do – women experience that collision between caregiving and work more starkly.
For instance, women caregivers are notably less likely to receive a pension and, if they do, their pension is approximately half of what men receive.
According to the Family Caregiving Alliance in the U.S., 70% of working caregivers suffer work-related difficulties due to their “dual roles.” In order to accommodate both their caregiving role and their paid working role, caregivers often have to make arrangements to leave work early or arrive late, or otherwise change their schedules around, says Whiting. As Dr. Keefe observes, individuals are facing a “reduction of hours or going from full-time to part-time to accommodate caregiving responsibilities.”
This not only has an impact on retirement savings, but also impacts any retirement earnings that may be based on the number of hours/years worked. Caregiving work can also “affect a person’s capacity for promotion,” says Dr. Keefe, as well as can stymie career opportunities that require relocation (since such individuals cannot move because they are providing care). In light of the fact that the average age of retirement has risen, a greater segment of the population will end up becoming informal caregivers while still employed, making it an important issue that workplaces must address.
Workplace Accommodations for Caregivers
In addition to representing a challenge to the caregivers themselves, the consequences of caregiving are having an impact on Canadian employers and society more broadly. As the Employer Panel for Caregivers has noted, estimates have placed the reduced work effort by caregivers at 2.2 million hours per week in 2012. Factoring in all the associated negative employment consequences, the Canadian economy lost the equivalent of 157,000 full-time employees in 2012 because of caregiving pressures – a significant loss in productive capacity. According to the Conference Board of Canada, Canadian firms have been incurring approximately $1.3 billion in lost productivity per year as a result of caregivers missing full days or hours of work, or exiting the workplace altogether.
Despite the high incidence of working caregivers, many organizations feel ill-equipped to deal with caregiver needs because they just do not know much about the issue. In many cases, employers are not even aware that someone is a caregiver, and therefore it can be difficult to accommodate. Dr. Keefe observes that caregiving for an adult is often a “hidden responsibility,” partly due to the social stigma associated with caregiving.
Sometimes employees do not feel comfortable self-identifying as a caregiver and coming forward to ask for benefits. They are scared of retaliation or are concerned that they will not be taken as seriously in their position.
When it comes to official support for caregivers, Dr. Keefe believes that Canada is “quite far behind.” There is a lack of legislation for this kind of workplace accommodation, which makes knowing what is acceptable or permitted quite difficult. When the benefits are not legislated or negotiated for in an employment contract, people do not have the “security in those go-to policies,” says Dr. Keefe. “Then the concern always is ‘will I be viewed as a valuable employee because of my additional responsibilities?’” But we need to realize just how economically crucial the unpaid caregiving work is to our society as a whole. “If everyone who was doing so stopped providing care, there would be huge implications for our continuing care system,” says Dr. Keefe.
Slowly Engaging Change
In many cases, both caregivers and workplaces do not view caregiving as a “workplace issue” but rather as an “outside pressure that they have to accommodate around,” says Whiting. Importantly, though, this societal perception is finally beginning to change. What employers need to realize is “that accommodating caregiving is tied into retention – making an acceptable workplace for caregivers means that you can retain highl-trained employees,” says Whiting. Most caregivers are talented and experienced employees who possess deep company or industry knowledge. These are key contributors to the Canadian economy broadly – individuals we do not want to see exit the workforce.
But how do we keep caregivers working and working well? We need official policies or programs in place to ensure that caregivers are treated fairly and to establish a supportive environment. “You need buy-in from top leadership” on this issue, says Whiting, with employers and governments taking the first steps.
Recently, the Canadian federal government implemented a few new policies in the 2017 budget for caregiver support, including an Employment Insurance Caregivers Benefit, which “will give eligible caregivers up to 15 weeks of [employment insurance] benefits while they are temporarily away from work to support or care for a critically ill or injured family member.” The government is also allowing federal employees to request flexible work arrangements from their employers, such as flexible start and finish times and the ability to work from home, in addition to new unpaid leaves to better balance work and family demands. Since labour codes operate at the provincial level, the federal government is “trying to lead by example” in proposing new measures for its own employees through this kind of policy, says Dr. Keefe.
Caregiving in a Perfect World
Finding solutions for working caregivers is important for a variety of reasons, not the least of which is that “people take a lot of value and meaning to the caregiving work they do,” says Dr. Keefe. In her research, Dr. Keefe has found that “for some, caregivers providing care improves the quality of the relationship with the person they are providing care to – it gives people a sense of accomplishment that they’re able to support their family member.”
So when we talk about caregiving, it is important to remember that it is not “all doom and gloom,” she says. “In a perfect world, you would be free and empowered to care for the people you love without having to worry about how it’s going to impact your career, without going into debt, and without damage to your own physical health and well-being.” We all need to start thinking about how we can help to make this happen – both at an institutional level and on a personal level.
Source: MIND OVER MATTER V6
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