Brenda Hill helps care for her mother Joan Baker, who has Alzheimer's disease, at her mother's home in Caledon East, Ontario on August 2, 2015.Michelle Siu/The Globe and Mail
Brenda Hill has many identities. She works as a wealth adviser for BMO Nesbitt Burns in Caledon, Ont. She's the primary caregiver for her 78-year-old mother, diagnosed five years ago with Alzheimer's disease. And she's the mother of two twentysomething kids.
Yet it's a new role that has helped her cope with the stress of juggling it all: She's a participant in a five-year pilot program launched by Mount Sinai Hospital's Reitman Centre for Alzheimer's Support and Therapy in co-operation with Bank of Montreal to help employees caring for family members with the disease.
This program and others like it are signs that workplaces and policy makers are starting to take caregivers' needs more seriously. Last year, the federal government announced the Canadian Employers for Caregivers Plan, which called on a panel of employers for their suggestions about how to better support caregivers and keep them in the workplace.
And in January, there was an extensive panel on the topic at this year's Human Resources Professionals Association (HRPA) conference.
These conversations come just in time, too. A 2012 Conference Board of Canada study estimates the cost to employers in lost productivity because of caregiving responsibilities to be $1.28-billion a year.
Statistics Canada shows that 8.1 million Canadians are caregivers, and of those, 6.1 million are in the work force. Most of the caregivers are aged 45 to 64, a group that also comprises the most experienced workers, says Allison Williams, a professor at McMaster University in Hamilton and research chair for the Canadian Institute of Health Research.
Since more than half of caregivers are helping their aging parents, Dr. Williams says the problem is set to worsen as the number of seniors requiring care is projected to double between 2012 and 2031.
For Ms. Hill, meeting regularly with her five fellow pilot-program members over the six-week course provided an opportunity to share information about disease symptoms, develop a support network, and gain expert advice on how to cope.
For instance, Ms. Hill learned that she should just listen to – rather than correct – the garbled stories her mother sometimes told, advice that reduced her mother's agitation, a symptom common to many people with dementia. Role-playing exercises helped participants to problem-solve complex situations, such as advocating for their loved ones more effectively with doctors. Ms. Hill has also been able to share her new knowledge with others, for instance, connecting her stepfather with an Alzheimer's Society support group and offering tips to her siblings.
"People come to me now because they know I've gone this route and have information," she said.
In 2004, Canada implemented Compassionate Care Benefits as part of the Employment Insurance system, a program that allows caregivers – widely defined to include everyone from parents to children to friends to common-law partners – who are eligible for EI to access six weeks of benefits over a six month period. Yet the 2012 Statistics Canada report also noted that only 12 per cent of caregivers had taken advantage of the program. Dr. Williams attributes this low uptake to lack of awareness.
While caregiving experts applaud the program as a positive step, they also note that caregiving can be much more protracted, and the kind of job that can require a morning off to drive a patient to a medical appointment, or an unplanned departure from work to head to an emergency room or senior's home.
That's where workplaces can help by instituting flexible work arrangements.
Sharon Baxter, executive director the Canadian Hospice Palliative Care Association, says that companies need to make such policies official. "A lot workplaces say that they accommodate caregiving, but they haven't written it into their policies and that can actually become a bit problematic because then you don't get the same consistency across employees. Somebody who works near the executive office has got a better chance of getting the time off than somebody that works in a plant," Ms. Baxter says.
For workplaces that have implemented policies and programs, the level of response is telling. Natalie Scott, managing director of global benefits and recognition at BMO, was surprised at the high turnout to an information session about the Alzheimer's pilot. "We had over 100 people attend. It was standing room only," she recalled.
Pharmaceutical company GlaxoSmithKline, which introduced its own compassionate care program back in 2002, predating the government legislation, offers eligible employees up to 13 weeks of leave over a two-year period. Eligible employees with at least three years service receive 13 weeks pay at full salary. Since it was introduced, approximately 160 employees have taken advantage of the program. Human resources vice-president Tracy Lapointe says that while the program demonstrates respect for employees, there is also a strong business case that helps with more practical goals like retention and staffing. "Their colleagues know they will be away for a certain period of time, so we can plan for it as business, and have the right coverages in place."
For workplaces that ignore the needs of the growing contingent of caregivers, the risks are high. "The data we have now suggests that we are losing talented people, some of them senior people with considerable skills and experience. We're seeing absenteeism. We're seeing people reducing to part-time and 'presenteeism' and stress as well," says Donna Lero, a professor at the University of Guelph's Centre for Families, Work and Well-Being.
Another burden is the personal cost to individual employees who risk burnout, Dr. Williams says. "What usually happens first is fatigue, then mental health issues like depression and anxiety, and then finally physical health issues."
While large employers with deeper pockets seem to be leading the charge on official policies, smaller organizations can also take steps. Revisiting start or end times, allowing employees to "bank" hours, and empowering managers to be flexible with their direct reports are common suggestions. "Some are as simple as making sure that the caregiver employee has the parking spot nearest to the exit door so that during their lunch they can take grandma to her specialist appointment," Dr. Williams says.
Editor's Note: An earlier version of this article incorrectly said the Compassionate Care Benefits program allows caregivers up to six months of benefits (expanded in the April 2015 budget from a previous cap of six weeks). In fact, the program allows caregivers eligible for EI to access six weeks of benefits over a six month period. This version has been corrected.