It’s time Canada cared more about its caregivers: CMAJ Editorial

Mar 5, 2019

Providing support for informal caregivers is a pressing health care and societal issue, argues Dr. Nathan Stall in a CMAJ editorial published this month.

Nathan Stall CSTPDr. Nathan Stall More than a quarter of Canadians routinely provide health care support for their family members, friends or neighbours, and for some, informal caregiving comes at the cost of negative effects on mental and physical health, financial strain and even increased risk of death. As the number of older Canadians requiring care increases, Dr. Stall argues that more needs to be done to provide support for informal caregivers.

“We must and can do more to acknowledge and support informal caregivers in bearing this burden,” writes Dr. Stall, a geriatrician and trainee in the Department of Medicine’s Clinician Scientist Training Program. 

Why is it important to acknowledge and support informal caregivers?

As the healthcare system grapples with how to prepare for Canada’s already rapidly aging population, one of the most overlooked issues is informal caregiving. Every day, about 28 per cent of Canadians provide care for a family member, friend or neighbour, and nearly half of us will do so at some point. Although many Canadians with chronic conditions and disabilities need care, the most common needs requiring caregiver help are age related. Over the next 20 years, the number of older Canadians requiring assistance will double, yet there is a shrinking pool of informal caregivers. Changes in demographics and family structures are reducing the ratio of caregivers to older adults, and many potential caregivers are unwilling to assume responsibilities or are exiting the role early.

What impact do informal caregivers have on the health system?

With 93 per cent of older Canadians living at home, unpaid or informal caregivers form the backbone of our healthcare system, providing up to 75 per cent of direct home and community care services at an estimated cost savings of $24 to 31 billion. Despite little to no training, informal caregivers are expected to provide medical and nursing care in the home, navigate complicated health and long-term care systems, and serve as substitute decision makers.

What burden does caregiving have on informal caregivers?

In Canada, one quarter of all caregivers for older adults are distressed, while nearly half of all caregivers for persons with dementia report distress. Distressed caregivers experience a myriad of adverse outcomes including deteriorations in mental and physical health, and disruptions in social and family relationships. There is even evidence that caregiving is a risk factor for mortality.

Many caregivers also experience financial strain, resulting in long-term economic and retirement insecurity. Caregivers incur significant out-of-pocket expenses for transportation costs, equipment needs and hired professional help to supplement the limited publicly funded home care services.

Caregivers may forgo wages and benefits, with many reducing their hours, missing work, turning down advancement opportunities or exiting the workforce altogether. Currently, 35 per cent of the Canadian workforce is balancing employment with caregiving responsibilities resulting in a loss of productivity estimated to cost our economy the equivalent of 157,000 full-time employees or $1.3 billion annually. Women are most vulnerable to financial consequences as they are more likely to assume caregiving roles and spend more time on caregiving tasks.

How can informal caregivers be better supported?

As Canadians, our ability to support informal caregiving remains one our most pressing healthcare and societal issues. Supporting caregivers starts with bolstering publicly-funded home care and respite care. Informal caregivers also need more access to caregiver­specific education and supports, with evidence showing that these can improve the well­being of both the caregiver and care recipient.

We also need to ensure that Canadians who assume caregiving roles are not unnecessarily financially penalized. Governments and employers should develop more flexible workplaces that accommodate caregiving duties and provide better access to paid leave and benefits. The most common form of financial support for Canadian caregivers is tax relief, yet only a small minority receive tax credits. Many caregivers are unaware of available financial assistance, and government portals for tax information are often difficult to navigate. Most caregiver tax credits are also non-refundable, meaning that caregivers must be earning sufficient income to claim the credit as a deduction.

Addressing this pressing health care and societal issue is undoubtedly complex, but innovative, effective and potentially scalable programs and policies already exist in pockets across the country. It’s time Canada cared more about its caregivers.

Dr. Nathan Stall is a trainee in the Department of Medicine’s Clinician Scientist Training Program and is completing a PhD in Clinical Epidemiology & Health Care Research at the Institute of Health Policy, Management and Evaluation. His research investigates the population-level impact of informal caregiving for dementia with a specific focus on sex and gender-based analysis.