In need of a healthy balance: Poor health and economic insecurity are realities for female unpaid caregivers

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Unpaid caregiving has become increasingly common since the onset of cuts to the Canadian healthcare system in the late 1980s. Yet this critical care provided to family and friends is invisible, lacking the financial, social and program support to prevent unpaid caregivers from depleting their own health and financial resources. 

Healthy Balance Research Program

The Healthy Balance Research Program (2002–2007; HBRP), has made visible the impact of unpaid caregiving on those providing care. Funded by the Canadian Institutes of Health Research, coordinated by the Atlantic Centre of Excellence for Women’s Health, the Nova Scotia Advisory Council on the Status of Women and the Institute of Population Health at the University of Ottawa, findings from this program fill a gap in the current knowledge of the social, economic and health consequences of unpaid caregiving in Nova Scotia, and bring to light the relationship between women’s unpaid caregiving, employment, health and well-being.

Unpaid caregivers perform many tasks that we would associate with paid healthcare providers, including use of medical devices such as urinary catheters or palliative care (lifting, bathing and diaper changes) feeding tube administration, and physical therapy, as well as assistance with additional activities of daily living and transportation. Unpaid caregivers care for a friend, neighbour, co-worker, parent, child, sibling, other family member or other individuals requiring care due to an illness, health limitation or disability.

Information about family caregiving has previously been accumulated at the national level by Statistics Canada. However, the sampling techniques employed by Statistics Canada do not allow for determining prevalence rates and demographics, nor do they outline the personal experiences of caregivers, including the health and economic status of caregivers in Nova Scotia. The HBRP has made it possible not only to identify the demographic characteristics of the unpaid caregivers in Nova Scotia, but also to focus on the social, health and economic features of the caregiving experience for women.

‘Women’s work is never done’: The health consequences of caregiving

Gender is a strong predictor of becoming an unpaid caregiver in Canada.  Women are far more likely than men to assume the role of unpaid caregiver in families and communities. This factor is important because unpaid caregivers increasingly provide healthcare support at home as changes in the healthcare system have resulted in a shift in responsibility for care onto families and communities, particularly women. In their role as unpaid caregivers, women are far more likely than men to take on the intense activities of caregiving, such as providing assistance with personal care, cleaning, meals and nighttime checks.

Unpaid caregiving was also found to be a source of negative stress affecting health and well-being, as well as the economic security of women who are attempting to balance paid and unpaid work. Caregiving work is made invisible both by the nature of the activities, which are usually performed inside of the home, as well as by the fact that it is considered a “labour of love” or “women’s work,” which is both devalued and unpaid. The absence of appropriate policy both at the provincial/territorial and national levels  requires an immediate response in order to alleviate the unnecessary financial, health and social support challenges faced by unpaid caregivers. 

A close look at the experience of Glenda (see below), a woman living in Nova Scotia and providing unpaid care to her daughter who lives with a disability reveals with shocking detail the inadequacy of the current patchwork of policy.

Glenda’s experience highlights in particular the significant economic impact of unpaid caregiving for women. Glenda’s experience, along with similar experiences of unpaid caregivers in Nova Scotia and across Canada, demonstrates the impact on women’s economic security and well-being, making it irresponsible for governments to maintain the status quo on policy. 

The impacts of caregiving are broad. Participants in the HBRP study have highlighted health and well-being in addition to significant financial and social impacts arising from experiences of unpaid caregiving. 

Mingmei, an immigrant woman to Nova Scotia providing care to her elderly father, details these challenges. Mingmei suffers the health impact of stress resulting from 24-hour caregiving.  A lack of readily available and culturally appropriate respite care limits support for Mingmei. This impacts her experience of health: “Last week I was sick. I never [used to get] sick. Three days I couldn’t get up from the sofa and all that is only the stress.”

There are many unpaid caregivers across Canada experiencing similar impacts on their health and well-being; focus group participants in the HBRP also reported negative stress, burnout, role conflict, physical injury, high blood pressure and the onset of health conditions.

Economic loss and financial hardship for caregivers

Current legislation and policy does not adequately support the economic, employment, health and social needs of unpaid caregivers. For example, the current Canada Pension Plan (CPP) guidelines are ill-equipped to support unpaid caregiving. In a report commissioned by HBRP analyzing the tax/transfer system mechanisms for funding unpaid caregiving, the author confirms that one in five women has left paid employment or retired early as a result of unpaid caregiving for a family member.

As women spend significant portions of time out of the workforce providing care and/or retiring early into caregiving, a financial penalty is felt when women become eligible for CPP. There is a lack of recognition of the value of caregiving while it is being done, a situation experienced as a financial penalty to elderly women through reduced CPP benefit payments. Currently, a provision exists to alleviate the financial penalty in the CPP program regarding time spent out of the formal labour force caring for a young child. However, a similar provision for unpaid caregiving does not exist.  

The network of federal and provincial/territorial tax/transfer system mechanisms related to unpaid caregiving, health and women’s economic security include the Medical Expense Tax Credit, Caregiver Tax Credit, Compassionate Care Program, Employment Support and Income Assistance (ESIA) and Veteran’s Affairs programming. However, these programs and policies are income dependent and have stringent eligibility requirements that preclude many women from accessing them.

For example, the Compassionate Care benefit as part of the Employment Insurance program requires 600 hours of work in 52 weeks and a signed medical certificate verifying a 26-week imminent death circumstance in order to qualify. Same-sex partners do qualify as common-law applicants for the Compassionate Care Program. ESIA programs provide a minimum amount of income, leaving a potential caregiver in a precarious financial position well below the poverty line. The Veteran’s Affairs caregiver remuneration policy has strict eligibility standards, which provides funding for professional caregiver services only and continued services for the surviving wife or husband of the Veteran.

Caregiving beyond the immediate family

At least one quarter of all of the care recipients in the Healthy Balance survey of unpaid caregivers in Nova Scotia provide care to a friend, neighbour or co-worker, consistent with the idea of community care. However, care provided by a non-family member is not financially supported by the majority of current policies and programs. Medical Expense Tax Credit and Caregiver Tax Credit mechanisms are similar in income dependency and relationship-specific eligibility criteria that limit access. This patchwork of programs and policies leaves many families, caregivers and care recipients with few or no options, having to fund any medical needs, devices or drugs not covered by healthcare out of their own pockets. 

Government policy and programs must be adjusted to reflect the value and contribution of unpaid caregivers to the health of Canadians. The health, economic security and well-being of women across the country are affected by participation in unpaid caregiving. Women are performing the majority of intense unpaid caregiving and are suffering the economic consequences of taking time out of the formal labour market to do so. The diversity of caregiving situations and diverse ethnic and cultural backgrounds of individuals providing care fails to be reflected in current policy.

The health impact on women of both activities involved in caregiving and time-stress resulting from struggling to balance both paid and unpaid work without appropriate social and financial support mechanisms will be reflected in a greater demand on the healthcare system.

Unpaid caregivers support the Canadian healthcare system by giving their time, energy and love, performing activities outside of those now required of the healthcare system. Women and men deserve to be healthy and equitably supported in their roles as unpaid caregivers. 

For more information please visit the Healthy Balance Website www.healthyb.dal.ca or contact: 1-888-658-1112.