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Who Cares for the Caregiver?

Health Quality Ontario’s latest report focuses on the challenges faced by Ontario’s informal and unpaid caregivers who look after long-stay home care patients.

For more than five years, I worked in government in the area of Health Human Resources. During that time, I considered issues of education, scopes of practice and regulation for more than two dozen health professional groups comprised of several hundred thousand people at least. Rarely discussed, however, was a group equally important and even larger in size: informal caregivers.

Chances are most of us have been caregivers at some point in life. Perhaps we assumed the role as a parent caring for a child with fever, as a friend shopping for a neighbor who had a recent knee replacement, as a spouse taking their partner to health appointments or medical tests, or as adult child looking after an elderly relative in early cognitive decline. In many of these cases, caregiving is a fairly short-term process, but sometimes it can stretch into months or even years.

When we serve as caregivers, we provide critical support to our loved ones and the health care system that surrounds them. However, this support often comes at a personal cost, especially when caregiving extends into a long period of time.

Today, Health Quality Ontario releases a new report to better understand our caregiver workforce and the toll often associated with this role. As a starting point, we found that rates of stress, anger and depression have more than doubled for Ontario’s caregivers in recent years, climbing from 15.6% to 33.3% between 2009/10 and 2013/14.

In Ontario, at least one informal caregiver, such as a spouse or adult child, shoulders the everyday care of almost all adults (97%) who also receive publicly funded home care. Most of these caregivers take on their role with little to no formal training or guidance. They step in to the fill the hours not covered by a paid support worker – often leaving little time to care for themselves.

The Reality of Caring focuses on those caring for people who are receiving home care services on a longer term basis. The report shows that for many of these informal caregivers, time-intensive caregiving can lead to sleepless nights, emotional exhaustion and feelings of guilt or loneliness that may negatively impact their work lives, personal relationships and social activities. Some studies associate long-term caregiving with physical problems, such as back aches, migraines, stomach ulcers, hormonal changes and even early death.

To illustrate this diverse range of issues, our report shares a number of stories from families across Ontario. There’s Nghi, a 50-year-old former trading supervisor for a stock brokerage, who must decide between returning to work and selling his home in order to pay the bills related to his informal caregiving. For years he has cared for his mother with vascular dementia and chronic asthma. Despite receiving home care from a personal support worker, Nghi’s mother can’t be left on her own for more than a few hours at a time. This means Nghi can’t hold a permanent job. Whenever he does leave his mother, even for a brief outing to run errands, he worries for her safety, fearing she might forget to turn off the stove.

Carole Ann is another caregiver who has stood by her husband Bill throughout his five-year ordeal of nine ankle surgeries, many infections and congestive heart failure. She described the feeling of not being able to escape the stress of caregiving even when she slept at night. She also shared her frustrations of feeling like she had to navigate the health system on her own. “There are a ton of resources available, but no way to find out who they are or where they are.”

These stories paired with the data in the report paints an important portrait of what is happening every day across the province. Even more so when we consider that the proportion of Ontario’s long-stay home care patients is growing – and becoming more elderly and impaired. The number of people aged 65 and older is expected to double to more than 4.5 million by 2041 from about 2.1 million in 2013, while the number of those aged 75 and older is estimated to jump to 2.7 million from 923,000 respectively. At the moment, Ontario’s long-term care homes don’t appear to have the capacity to take on these growing numbers, placing more stress on unpaid caregivers. It feels a bit clichéd to talk about a ‘perfect storm’ but looking at this report, it’s hard to feel otherwise.

Our report also highlights some of the initiatives already taking share to address caregiver distress. While none are an immediate fix, they are an important start.

In shaping the quality of care in Ontario, we know we must include those who provide care too – in any capacity. I encourage you to read our report and share your story with us at engagement@hqontario.ca

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