In Need of a Healthy Balance: Poor Health and Economic Insecurity are Realities for Female Unpaid Caregivers

Carolina Crewe

Whether caregivers work for pay or provide full time care, they need respite support, financial support, training and education support.  The government needs to develop a sound program to let caregivers know they are supported.

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. 

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, the program’s findings fill a gap in current knowledge of the social, economic, health, and demographics of unpaid caregivers in Nova Scotia and investigate the relationship between women’s unpaid caregiving, employment, health, and well-being in Nova Scotia.

Unpaid caregivers perform many tasks we would associate with paid healthcare providers, including catheterization, palliative care, feeding tube administration, and physical therapy, as well as assistance with activities of daily living and transportation.  Unpaid caregivers care for a friend, neighbour, co-worker, parent, child, sibling, other family member, or other individual requiring care due to an illness, health limitation, or disability.

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 is 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. This 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 and national level requires an immediate response in order to alleviate the unnecessary financial, health, and social support challenges faced by unpaid caregivers. 

Glenda’s Experience of Unpaid Caregiving
(Reproduced with generous permission from Glenda Robertson)

A close look at the experience of Glenda, 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. 

My job is full time. Well, more than that I suppose—I work around the clock seven days a week with no vacation time. I have given this position the name “perpetual unpaid caregiver.” There are many similarities in my job as in most occupations and yet often times my job is viewed as not a job at all. But I know what I do and I know that at the end of my journey there is no Canada pension, no retirement income, no medical plan to address my inevitable aging, nothing to indicate that I have made a substantial contribution, that I have worked, and worked damn hard. I have been a woman that was to accept her “lot in life.”  Well, I did. I became the best damn caregiver I could be. My daughter, Arlene, is happy, well-adjusted, and as productive a member of society that society will allow. She loves life, loves herself, and has a sense of humour second to none.  She was born into a loving, caring, and willing family.

LMBBS—the short form of the big issue—Laurence-Moon-Bardet-Beidyl Syndrome, was mentioned very little in Arlene’s life. This diagnosis suggested serious impacts on Arlene’s life ranging from mental challenges to sensory issues. This was the label. . . . Arlene was the substance beneath the label. In her early beginnings it was evident that her blindness would be an ongoing obstacle, because sight was lost gradually. Many things had to be learned over and over again, sometimes with great frustration and tired tears. Then I would turn to my greatest teacher, Arlene, and she would patiently teach me again and again. My caregiving is a legacy I pass on. The daughters I have raised will accept their sister into their adult lives as a special gift. We are a family. We are what life is all about . . . and we are caregivers. We need to be seen and heard and given the benefits of a life free of uncertainty and poverty. I try diligently to address the issues surrounding the plight of unpaid caregivers, without infringing on the rights of my daughter to feel the pride of being a productive member of society. After all, this issue of unpaid care is not her issue.

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, demonstrate the impact on women’s economic security and well-being, making it irresponsible for government to maintain the status quo on policy. 
The impacts of caregiving are broad. Participants in the HBRP portraits 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 resultant of 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 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, burden, physical injury, high blood pressure, and onset health conditions.
 
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 1 in 5 women has left paid employment or retired early as a result of unpaid caregiving, which is necessary 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.  

A network of federal and provincial 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. 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 an imminent death circumstance in order to qualify. 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 limit support to family members only. At least one quarter of all 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 policy 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 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. Men and women deserve to be healthy and equitably supported in their roles as unpaid caregivers. 

For more information please visit the Healthy Balance Web Site

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