The gift of caregiving
This story was originally featured in The Queen's Gazette
One in four Canadians provide unpaid care for a family member or close friend with aging-related needs, chronic diseases, or disabilities. These caregivers sacrifice time and resources to be there for their loved ones when services like personal support and specialized homecare are limited or unavailable, and they often do so with little training, support, and recognition. Because the wellbeing of care-recipients is highly dependent on the wellbeing of their caregivers, Afolasade Fakolade, assistant professor in the School of Rehabilitation Therapy, is motived to understand how we can better care for family caregivers.
Caregivers often fall through the cracks in terms of supports – a challenge Dr. Fakolade has faced herself. Shortly after graduating as a physiotherapist, she took up the role of a caregiver for her mother, diagnosed with a serious medical condition. She soon found out that nothing in her professional training could have prepared her for this situation – the physical, psychological, and economic impacts of being a family caregiver.
Her research program focuses on family caregivers of people with multiple sclerosis (MS), a chronic disease often diagnosed in early adulthood that affects the brain and spinal cord and can cause physical, psychological, and cognitive symptoms. Some individuals with MS have limited ability to engage in daily activities, like walking, speaking, or writing.
“The MS caregiving role can last a lifetime,” says Dr. Fakolade. “Some caregivers provide care for more than five decades, which means that caregivers and their care-recipients are together navigating major life milestones like career-building and parenthood, while managing the disease.”
Positive outcomes of caring – and how to get there
While caregiving is often associated with negative outcomes – high levels of fatigue, anxiety, and depression, social isolation, poor quality of life – Dr. Fakolade is interested in the rewarding and satisfying side of caring for loved ones.
For the past three years, her team has been accompanying 500 family caregivers that support people with MS in Canada. The caregivers participate in annual surveys about how they maintain their wellbeing and are asked to share personal experiences of caregiving and wellness.
“Their stories highlight areas where these unsung heroes are struggling, but most importantly, their stories reflect positive aspects of caregiving and what is needed to ensure that positive experiences become a reality for all caregivers,” says Dr. Fakolade.
Those interviewed say they have experienced personal growth, an increased sense of self-confidence and self-worth, and a deeper appreciation for life because of their caregiving. They say caregiving has taught them important life skills, such as problem solving, and helped them strengthen their relationships with their loved ones.
Although these positive experiences are not the norm for most caregivers, they provide insights into how we can better support caregivers and prevent or relieve their struggles. Dr. Fakolade lists four key tools that can improve caregivers’ wellness: quality physical activity, support services rooted in the community, multiple support networks (e.g., family, healthcare workers, church, and community groups), and finally, education about the disease and what to expect as a caregiver.
Dr. Fakolade strongly believes that assessing and monitoring caregiver wellbeing should also be a priority for our health and social care systems – including funded programs, interventions and services that focus on these individuals. Health and social care providers can play an important role in encouraging caregivers’ selfcare and connecting them with available services and community-based initiatives.
“As a society, we generally don’t expect people to become military personnel, firefighters, police officers, doctors, or nurses without adequate training and support, yet we think that it’s okay for caregivers to assume this role without preparation, without the tools they need to succeed, and without knowing how to be well. We can do better. We have the capacity to do better,” says Dr. Fakolade.
Watch Dr. Fakolade's presentation as part of the Cinq à Sept Research Talks series: