In interviews with people who provide unpaid care for people with disabilities across Canada, many participants said that they do not have access to critical supports and services. In the absence of robust formal support systems, these caregivers struggle to sustain the health and wellbeing of their care recipients, as well as their own. It also creates financial stress and increases caregiver workload. All of this illustrates the urgent need for systemic improvements and support structures that protect the health, wellbeing, and financial stability of caregivers and care recipients.
Financial instability as a barrier to care
Many participants spoke about the financial challenges associated with being a caregiver. Unpaid caregivers are frequently unable to maintain traditional full-time employment due to the demanding nature of their responsibilities, which can include but are not limited to transporting care recipients to appointments, preparing meals, managing household chores, administering medication, and, in some cases, providing care for other dependent family members, such as children. Even brief periods of separation from their care recipients can cause considerable stress, which can be an additional obstacle to employment outside the home. For example, UD35, a woman caring for her disabled husband, states that weekends are hard for her “because I have to leave and do groceries and do… errands and, so in a way it’s like a break to leave the house… but then you’re always worried what’s going on at home? Is everybody okay?” (10:00 – 10:39). Many participants describe being stuck in a cycle – because they can’t work, they can’t earn money to pay for supportive care services, which increases the intensity of their care responsibilities and limits their ability to do paid work.
Rising costs of living also exacerbate financial stress for many caregivers. Some participants relocate to rural areas, where housing costs tend to be lower than in major Canadian cities, but this can complicate their access to care services, which are often only available in urban centres. For example, UD22, a participant who provides full-time care for her husband due to his autoimmune disease, explains that “access to our closest hospital is a 45 to 50 minute drive. So, you know, any access to healthcare that way, you know, we have a bit of a commute” (3:50 – 4:10). Such commutes are common, meaning that many caregivers are spending extra time, energy, and money on transportation expenses.
Moreover, care services are often expensive. There are high costs associated with many medical treatments, therapies, programs, and accessibility modifications for homes and vehicles. Even when caregivers have access to the financial assistance that can help them afford these services, they are often required to pay out of pocket and then wait for reimbursement. For example, UD10, a participant who provides care for a child with multiple disabilities, reports significant challenges in obtaining reimbursements for medical treatments, as well as in managing the high costs associated with specialized educational programs. Furthermore, the nature of the child’s disabilities requires costly home modifications, which have to be financed out-of-pocket. Similarly, participant UD22 cares for her husband, who requires the Total Parenteral Nutrition (TPN) home program to support his treatment and daily functioning. This program is not covered by insurance in her province, and despite successfully advocating for partial coverage, she still needs to pay “an $8,400 bill every 20 days… and then I have to wait for them to reimburse us 80%” (52:30 – 52:40).
Many of the participants say they need more financial support from the government in order to access essential care services. Such support would also enable caregivers to pursue employment and attain income sufficient to meet their own basic living expenses. In doing so, it may help to break the cycle where caregivers are unable to financially support their care recipients due to limited income yet simultaneously cannot engage in paid work because of their caregiving responsibilities.
Caregivers as advocates in healthcare settings
A recurring theme among unpaid caregivers—particularly those supporting dependent children or adults with complex medical conditions—is the critical role of caregiver advocacy in interactions with the healthcare system. Being an advocate is not easy and often does not yield immediate results, which can take a toll on caregivers. For example, UD42 is a mother caring for her daughter following a sports-related concussion that caused a significant decline in mental health and an increased need for professional intervention. UD42 told the hospital that her daughter’s mental health needs required admission in-patient care, but because her daughter was not yet 18 years old, the hospital refused. “It took maybe three attempts at suicide before she was admitted to a hospital under emergency, like there had been many visits to the hospital emergency room leading to that point where she was turned away.” (12:40 – 13:10). UD42 describes feeling powerless in her inability to support her daughter and expresses deep frustration with the healthcare system for repeatedly dismissing her daughter’s condition.
Healthcare systems and programs often exhibit resistance to caregiver advocacy, particularly when it involves questioning or challenging institutional authority. For instance, UD13, a woman caring for her mother with Alzheimer’s disease, says that the most stressful aspect of her caregiving role is “talking to home care and getting her right to receive [care].” (36:55 – 37:02). She recounts that, in her attempts to advocate for her mother and ensure she was receiving adequate care, the Alzheimer’s care program threatened to withdraw services “because they consider me difficult or challenging because, you know, I argue with them or, you know, advocate for my mom and they don’t like that” (38:20-38:31). This dynamic can significantly heighten the stress and anxiety experienced by unpaid caregivers, who bear the primary responsibility for the wellbeing of their family members.
Several participants who have career experience working in healthcare settings say that their professional knowledge enables them to be more effective advocates. At the same time, though, these caregivers also report negative interactions with medical staff. UD22, for example, has formal training and experience as a nurse, which gives her confidence when administering her husband’s medications, advocating for his care, and managing his home TPN program. However, UD22 also says that her nursing qualifications have frequently led medical professionals to assume that she can handle all aspects of her husband’s care independently. As a result, there have been instances in which he was discharged prematurely, with the expectation that she would assume responsibility for procedures typically performed by clinical staff. UD22 expressed frustration with this dynamic, stating that… “I can’t do this, I’m already, like, so thin…and I have four kids and him to take care of and now you just want me to get up at midnight and 6am to run a 45-minute antibiotic through, like I- it’s not- I can’t do it.” (17:20 – 17:33).
At times, UD22 also has noticed a negative shift in hospital staff’s demeanor after learning that she has nursing training and experience. “I think they felt like I was questioning or analyzing or watching, like… every time, everywhere we go… and I feel they see me writing things down, [and] instantly [they] think it’s a negative thing.” (19:06 – 19:16, 19:30 – 19:35). These experiences illustrate that, while a medical background can enhance a caregiver’s ability to advocate effectively, it may also have unintended negative consequences when interacting directly with healthcare professionals.
When caregivers feel ignored or marginalized, they may perceive that they are being pushed into situations they do not fully understand, which exacerbates stress and can negatively impact their own mental health. The healthcare system must also consider the broader environments and contexts that caregivers and care recipients operate in, regardless of the caregivers’ educational or professional backgrounds. Unpaid caregivers with medical backgrounds should not be expected to bear the full responsibility for caregiving, particularly if they have other responsibilities or need to care for additional family members.
Conclusion
The experiences shared by unpaid caregivers demonstrate the need for systemic reforms aimed at improving access to essential resources. In particular, the lack of adequate financial support and the challenges associated with caregiver advocacy place significant strain on caregivers, both physically and mentally.
To address these issues, it is crucial that policymakers improve support structures such as financial aid, and that healthcare providers consider the concerns and living conditions of caregivers and care recipients when administering care plans. Only through such efforts can society safeguard the wellbeing of caregivers, ultimately improving the quality of care provided to those in need and fostering a healthier, more sustainable caregiving environment.
Project Lead
-
Tianyang Liu