Canada’s diverse caregiving community in dire need of federal strategy

If every caregiver in this country took a week off, Canadians would experience the collapse of our care systems before noon of the first day.

That’s because caregivers deliver roughly three hours of care for every hour provided through our health-care, disability and social support systems.

Canada is a nation of caregivers: a daughter helping her mother stay healthy and active in a long-term care home; a brother supporting his sibling with developmental disabilities; a young adult supporting a grandparent with dementia; a neighbour supporting a friend with chronic health issues.

One in four Canadians is a caregiver – and for women, it’s one in two.

While supporting those in need of care is integral to a functioning society, Canada’s caregivers are unseen, unacknowledged and at a breaking point. We lack a comprehensive approach to caregiving for many reasons: aging demographics, increased complexity and prevalence of disability, longer lifespans and significant policy and program gaps. To date, our policy response has largely been a deafening silence.

A major policy gap has emerged with the shift away from hospitals and into family homes. Part of this shift has been an unspoken assumption that families would look after their loved ones. Yet families – or chosen families – have not been provided the tools or resources to adequately give care. Too many families are now overstretched, and caregivers are facing declining physical, mental and financial health.

For many families, caregiving presents a spectrum of stress, concern and uncertainty, and many are struggling: a 2021 University of Alberta survey identified high rates of loneliness (87 per cent), anxiety (73 per cent) and deteriorating mental health (69 per cent) among family caregivers. Six million Canadians juggle these care responsibilities with work, many balancing the needs of their own aging parents or family members with high or complex medical needs against the need to make a living. Such high physical and emotional stress often causes absenteeism from work. They may eventually be forced to reduce their hours of work or leave the workforce altogether. This leads to reduced family incomes, difficulty making ends meet, lower government revenue from income taxes, and an estimated $1.3 billion in lost productivity across the economy.

Meanwhile, burnout puts care recipients at risk. Insufficient support can bring life-changing consequences to those who lack the care they need, including more frequent hospitalizations that are linked to poorer health.

Overall, Canadian family caregivers work 5.7 billion hours per year supporting the people in their lives. This is equivalent to 3 million full-time care providers. This division of labour saves the country billions in health-care resources – triple the national expenditures on home, community and long-term care. Yet, as our senior population grows from six 6 to 9.5 million between 2014 and 2030, there will be 30 per cent fewer close family members available to care for them.

Caregiving is essential to the fabric of our country, and we share a collective responsibility to recognize and support caregivers. We need a concerted policy response that meets caregivers where they are: the long-term care facility, the group home and at their kitchen tables at 3 a.m. as they frantically search for help.

We need a national caregiving strategy. To be effective, the strategy must include a broad and comprehensive set of policy responses that meet the needs of today and tomorrow:

• Better financial supports, such as tax credits and income replacement for caregivers and people with disabilities.
• Expanded home and community care services.
• Integrated care across services and sectors.
• Policies, benefits and legislation to support flexible work for employed caregivers.
• Better wages and working conditions for care providers.

To build an effective plan, decision-makers must build bridges to engage caregivers, care providers, care recipients, researchers, health and social care professionals and leaders from an array of groups dedicated to aging, disability and illness.

We justifiably take great pride in our world-leading universal health-care system. Yet, in caregiving, we are decades behind our peer countries.

After the U.S. introduced the National Strategy to Support Family Caregivers last year, President Joe Biden signed a multi-billion-dollar executive order directing agencies to boost access to affordable, quality care and support caregivers. In the United Kingdom, people who spend 35 hours a week in a caregiving capacity receive an allowance of about $500 a month – and a new Carer’s Leave Act ensures any worker can take flexible, unpaid leave from work to provide or arrange care for a loved one. In Denmark, caregivers can access allowances and respite support in a country that places heavy emphasis on community-based, de-institutionalized care.

We are at an inflection point. It’s time to unite the many touchpoints of care, including health, seniors, disability, tax and immigration. The non-refundable Canada Caregiver Credit is a fine start, but it is only that – a start.

In the face of such urgency, the Canadian Centre for Caregiving Excellence (CCCE) is holding the first-ever Canadian Caregiving Summit Nov. 6-8 in Ottawa. It will bring together a vast array of stakeholders to lay the groundwork for a national caregiving strategy. This is a pivotal conversation that will shape our collective response to the next frontier of public policy in Canada.

I have been a caregiver my entire life. As a child, I helped grandparents with medical appointments and banking. Over time, that care turned into back-breaking lifting and turning, and slow and careful feeding. As a policy professional, I understand the complexities at play; budgets are finite, jurisdictional lines are insurmountable and systems are hard to fix. But as a caregiver, I also know what’s at stake each day as we watch our loved ones’ needs change and our system fail to support them.

Canadians look after each other. We can and must do better. A national caregiving strategy is a good place to start.