Thank you, Madam Chair, and good afternoon to members of the Standing Committee on the Status of Women.
The Alzheimer Society of Canada appreciates the opportunity to contribute to the committee's important study on unpaid work. Today I will address how the critical role of unpaid caregiving, specifically as it relates to dementia care, is almost entirely invisible in our society.
Our key point to this panel is this: Caregiving is essential to our social fabric. The work of caregiving falls primarily to women, with direct negative consequences to them as individuals, and society at large. We urge the committee to shape and drive policy changes to reflect a core reality: This is not just a women's issue. This is a crisis, with harsh consequences for all Canadians.
I will discuss this through three key points: measurement, acknowledgement and compensation.
There are well over half a million Canadians living with dementia right now. It has a range of symptoms that, over time, destroy a person's ability to function and perform everyday tasks that we take for granted. This leads to the need for 24-hour personal care, and there are no survivors of dementia.
In fact, one in two Canadians is touched by dementia. Women make up two-thirds of all people diagnosed, and more than 60% of caregivers are women. By those numbers, six members of this standing committee could become caregivers.
The impact of this is multi generational. Wives are more likely to become caregivers for their husbands than vice-versa, and daughters make up more than one-third of all dementia caregivers. Without adequate home and community care support for people living with dementia, this care falls overwhelmingly on women.
What is the impact?
Lisa Raitt, a former MP, is the full-time caregiver for her husband who was diagnosed with dementia five years ago at the age of 56. Like many women, Lisa is balancing multiple responsibilities: motherhood, her work and supporting her husband. She's unable to do other work until her husband is asleep, or unless she has a paid caregiver to support her. In Lisa's words:
...the amount of pressure that is at play on the caregiver...[needs to be talked about and] so few people talk about it meaningfully in society.... I'm the nurse that's charting all of the reactions and the treatments...I'm out of my league.... a lot of people...die because of caregiving.... They're stress-killed....
In terms of measurement, around 20% of women are forced to give up work entirely to become a full-time caregiver. This is a multi-faceted strike against the economy. What happens to the local and federal taxes when thousands of women step away from the workforce? What happens to the investments made in a woman's education by the state, or by an organization's investment in her career? In a two-income household, what happens when one of these is lost?
Caregiving is not just a women's issue.
In terms of acknowledgement, dementia itself is already burdened by the stigma associated with the disease, but this stigma also carries to the family caregivers. Study after study demonstrates that caregiving has a serious and long-lasting impact on the mental and physical health of those carrying this responsibility. Combining this with the added social stigma not only increases the negative health impacts on them personally, but on the health system at large.
In terms of compensation, women from black, indigenous and other communities of colour are not just those at greatest risk of developing dementia, they are the predominant caregivers, either paid in long-term care facilities or unpaid within their families and communities, yet the skills and strength they bring are rarely acknowledged, valued or appropriately compensated, even when paid. In fact, unpaid care is important to economic activity and an indispensable contribution to society, much like doctors, teachers and armed forces personnel. All ensure the well-being of our citizens, yet no one would ask any of them—a surgeon, a soldier or a teacher—to provide their services for free.
The 2015 Alzheimer Disease International report measured the global impact of dementia. Overwhelmingly the cost of informal, unpaid care makes up 40% of the overall cost of dementia, which in Canada exceeds $10 billion annually.
Women do the bulk of paid and unpaid caregiving around the globe, and it is systemically undervalued. Not only must this work be compensated, but caregiving must be an economic priority providing stability and adequate education to those who must take on this responsibility, and we must make efforts to erase the stigma attached to it.