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Informal caregivers are individuals providing unpaid support to loved ones with ongoing and complex health needs (Canadian Caregiver Coalition, 2015). In Canada, there are more than 8 million informal caregivers (Canadian Caregiver Coalition, 2015). On average, caregivers provide around 17 hours of care per week, though this increases to 26 hours for those caring for someone with dementia (Canadian Institute for Health Information (CIHI), 2018). The work of caregivers is vital to the health care system as caregivers provide up to 75 percent of the care received by individuals accessing both formal and informal supports (Canadian Caregiver Coalition, 2015). Unsurprisingly, caregiving is a taxing responsibility that is associated with a range of negative health outcomes (CIHI, 2018).
In completing her honours undergraduate thesis at St. Thomas University, Elizabeth Dreise investigated how informal caregivers manage driving safety with their loved ones, particularly in the context of dementia or cognitive decline. The data for this project came from supervisor Dr. Michelle Lafrance’s larger research project on informal caregivers in New Brunswick (Lafrance, Poulin, & Gouliquer, 2018-2020). Dreise and Lafrance analyzed the accounts of 14 individuals using thematic analysis (Braun & Clarke, 2006). Twelve of the participants were female and two were male, with ages ranging from 41 to 78. The majority of participants were caring for a loved one with dementia, with the remaining caring for individuals with conditions also associated with cognitive decline such as Parkinson’s or stroke.
Findings
In analyzing the interviews, Dreise and Lafrance found that participants talked at length about the increasing danger presented by their loved ones’ driving. They documented specific instances where their loved one had been involved in accidents, drove into buildings, drove on the wrong side of the road, and displayed generally concerning driving behaviors. Participants described that over time, these instances of dangerous driving became increasingly difficult to manage. For instance, one caregiver, Julie, recounted a time when her father backed into a car while leaving a parking lot. He then pulled forward and ran into another car before driving off without noticing the damage done. In describing this, she expressed, “So then it became um a full-time thing, now what do we do? How do we handle [this]?”.
Julie’s experience is an example of the types of risky situations informal caregivers faced. In response, participants reported the use of various coping strategies. These included working to revoke their loved one’s license and removing or disabling the vehicle. Further, almost all participants described assuming the responsibility for their loved one’s transportation needs.
While these coping strategies were, to an extent, effective, they often led to additional challenges for caregivers to manage. These challenges stemmed from the resistance of three main sources: care recipients, family members, and doctors. First, participants often faced anger and blame from their care recipient when attempting to address perilous driving behavior. Care recipients were described as being furious when it was suggested that they stop driving, thereby threatening the relationship with their caregivers.
Second, participants described the criticism and lack of support they sometimes experienced from other family members. For instance, Marilyn stated, “My brother blames me. My brother says to me, ‘You […] were the one who took daddy’s license away from him”. Margaret explained, “It was difficult to explain to my husband’s siblings that he wasn’t able [to drive] anymore […] they weren’t ready to accept that” (Margaret). Rather than a source of support, participants often reported that their family did not necessarily share their understanding of the danger presented by their loved one’s driving. As a result, navigating conflict with family was another challenge for caregivers.
Third, while many participants were supported by doctors, some experienced marked resistance in their attempts to address driving safety. Several participants stated that they had to be the ones to bring up driving safety concerns with the doctor and initiate these conversations. Even when they did this, some doctors were still unwilling to address the issue. As Diane shared:
She [doctor] wouldn't take my father's license away when I asked 'em, like he was driving on the left hand side of Mountain Road instead of the right hand side-like things like that he cut in front of an eighteen wheeler with my husband so it was time…anyways she didn't want to take his license away!
In her account, Diane highlighted the stress that she faced because her doctor refused to remove her father’s license. She suggested that the reason for this doctor’s hesitancy was a fear of being sued by patients. David shared a similar concern around doctors’ hesitancy to remove licenses, stating, “They're afraid to because they are pilloried for doing it”. Without the support of doctors, participants were left to navigate driving safety on their own.
Faced with this significant responsibility to address driving safety, caregivers described being positioned at the center of a moral dilemma. On one hand, caregivers were witnessing undeniably dangerous driving behavior that could harm their loved one or the public. On the other hand, they had to somehow cope with the negative reaction of their loved ones, family, and even doctors when attempting to address driving safety. As Julie expressed: “[My] two brothers thought that [removing their father’s license] was just a horrible thing to do and I felt so guilty! But I thought he's either going to kill himself or he's going to kill a child”. Here, Julie highlighted the complexity of addressing driving safety wherein this involved layers of meaning and emotional and relational dynamics.
The findings of Dreise and Lafrance’s research displayed the real challenges faced by informal caregivers in navigating driving safety. Many of these stemmed from the way in which the current licensing system in New Brunswick operates. Within this system, it is often either caregivers or family doctors who hold the responsibility, and consequently the blame, for revoking driver’s licenses. This is problematic since doctors and caregivers are two of the most important supports for an individual with dementia, making it crucial to maintain these relationships. Consequently, solutions are needed to better support and sustain the work of caregivers.
One approach identified through this project and supported by existing literature is to implement a government mandated system involving an independent body of specialists who could oversee the area of driving safety and assessment (Rapoport et al., 2007). This would ensure that neither the caregiver or the family doctor hold the ultimate responsibility for making decisions around driving cessation, thus distancing ‘blame’ to someone outside of the support network of someone with dementia or other conditions affecting driving ability. Further exploring potential solutions to the issues identified by participants will be the next step of this project.
Authors
References:
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101.
Canadian Caregiver Coalition. (2015). Beyond recognition – Caregiving and human rights in Canada: A policy brief. Retrieved from http://www.carerscanada.ca/wp-content/uploads/2016/02/CCC_Policy_brief_Human_rights_EN.pdf
Canadian Institute for Health Information. (2018). Unpaid caregiver challenges and supports. Retrieved from https://www.cihi.ca/en/dementia-in-canada/unpaid-caregiver-challenges-and-supports
Lafrance, M.N., Poulin, C., & Gouliquer, L. (2018-2020). Informal caregivers of older adults: Exploring the individual, social, and political context in New Brunswick. Social Sciences and Humanities Research Council of Canada, Insight Development Grant.
Rapoport, M., Herrmann, N., Molnar, F., Man-Son-Hing, M., Marshall, S., Shulman, K., & Naglie, G. (2007). Sharing the responsibility for assessing the risk of the driver with dementia. Canadian Medical Association Journal, 177(6), 599-601.
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