"Superior by nature"?-Diagnosing dementia in northwestern Ontario

Abstract

In 2025, Canada is home to approximately 771,939 people living with dementia and Ontario is projected to have the most new cases by province in the country by 2050. Northern Ontario makes up over 90% of the province’s landmass and has 6% of its population. In Northwestern Ontario specifically, there is a higher proportion of people over the age of 65 compared to the rest of the province. This is important because prevalence of dementia nearly doubles every five years after the age of 65, meaning a population more at risk of developing dementia. Rural and remote communities in the northwest region are struggling to meet the basic healthcare needs of their residents. The Ontario Medical Association has labeled the state of the healthcare in this region a ‘crisis’ (n.d.(b)). This research explored the experiences of giving and receiving a diagnosis of dementia from the perspectives of physicians and caregivers of people living with dementia in northwestern Ontario. Existentialist phenomenology was utilized to uncover shared meanings and understandings about the diagnosis process, particularly how these experiences are situated in a remote and rural context. There were significant system gaps that impacted the experience of caregivers of people living with dementia and physicians in northwestern Ontario. Not being heard by physicians damaged relationships between caregivers and the healthcare system and created feelings of mistrust, frustration, and isolation. Physicians managed the emotional work of dementia diagnoses in private while working to overcome system shortages that impacted their ability to care for people living with dementia. However, despite the tension in relationships between physicians and caregivers, they often cited similar healthcare challenges that greatly impacted good dementia care. The struggles plaguing the healthcare system in northwestern Ontario appeared to impact everyone involved in dementia diagnoses, and both caregivers and physicians were committed to overcoming challenges and providing the best care possible for people living with dementia.