Society has come a long way in the way we view and discuss mental illness, and we know a lot more now about illnesses like anxiety and depression. But severe and persistent mental illnesses like schizophrenia, bipolar disorder, and borderline personality disorder are still often left out of the discussion, partially due to misinformation and stigma, and partially due to a lack of data.
We need reliable data to understand and ease the burden of mental illness globally. First and foremost, we need to know the prevalence and social impacts of mental illness so we can better determine how much funding should be allocated for the treatment and services of those illnesses.
What is a prevalence rate?
The prevalence rate of a mental illness is generally a measure of how many people in a given population will develop that mental illness in their lifetime. The prevalence rate of schizophrenia in Canada is most often reported as being one per cent. That means funding for the treatment of this serious and persistent mental illness is meant to support roughly 380,000 Canadians.
However, based on recent studies, including a 2023 US report titled Mental and Substance Use Disorders Prevalence Study, the BC Schizophrenia Society recommends adopting 1.8 per cent as the schizophrenia prevalence rate for service planning. It is important to note that this number could very well be higher due to underreporting and barriers to service.
What does this prevalence rate increase mean?
The previous prevalence rate relies on data from the Canadian Chronic Disease Surveillance System (CCDSS). The CCDSS and many other reported prevalence estimates use methods such as linking information from health insurance registry databases to billing databases from physicians and hospitals via unique personal identifiers like health card numbers.
The CCDSS has reported 1.1 per cent and 0.9 per cent as the annual prevalence rates for schizophrenia in BC and Canada, respectively. However, they acknowledge that their data is “based on people with diagnosed schizophrenia who had contact with the health system during the data collection period.”
This caveat can lead to underreporting, as many people with schizophrenia may not have a diagnosis or seek treatment. According to the Treatment Advocacy Centre, an estimated 40 per cent of individuals with schizophrenia go untreated in any given year. This is partially due to anosognosia, a common symptom of schizophrenia that leaves one unable to understand or recognize that they have a mental illness or need help for it.
Even people with a diagnosis and access to health services may be excluded from prevalence estimates, and underreporting is often higher in vulnerable populations like minorities and the unhoused.
How can research help?
There are several steps that can be taken to minimize and acknowledge underreporting in the prevalence rate of 1.8 per cent:
- Including all schizophrenia spectrum disorders (schizophrenia, schizoaffective disorder, and schizophreniform disorder) in these counts, which have similar treatment and support service needs.
- Including people in psychiatric hospitals, prisons, and homeless shelters in surveys, all of which are key vulnerable populations often left out of traditional research.
- Utilizing clinical interviews with patients to identify schizophrenia cases more accurately.
Why does this matter?
The increase in our estimated lifetime prevalence for schizophrenia further emphasizes that current service levels need to be expanded in order to meet the needs of the approximately 97,000 British Columbians who will be afflicted with schizophrenia at some point in their lives. The burden of insufficient care affects everyone, from individuals with mental illness to their families to the larger community, in many ways.
On an individual level, people with schizophrenia often experience severe barriers to employment, housing, and social support; stigma and discrimination are common in both community and healthcare settings. Furthermore, people with schizophrenia often find it difficult to find and keep employment. Only 15 per cent of Canadians with schizophrenia are employed, and a large proportion of those suffering from this illness rely on social assistance.
People with schizophrenia are also two to three times more likely to die early than the general population. This is often due to physical illnesses or suicide.
Schizophrenia also has many impacts on the families and loved ones of those who experience it. Many family members will become caregivers for loved ones with schizophrenia, often without any prior training or experience. On average, these family and friend caregivers spend 31 hours per week providing care for patients with schizophrenia.
Bonnie Spence-Vinge, the Interior regional manager of the BC Schizophrenia Society, works with family caregivers every day. Many of these family caregivers provide most or all of the care for loved ones with a serious and persistent mental illness, often due to a lack of other resources.
“There are huge problems for families trying to access support,” she says, “so they often have their loved ones in their homes [who] are doing all the caregiving.”
As a family caregiver herself, Spence-Vinge knows firsthand how much this can burden families.
“The loved one becomes the entire focus of their life,” she says. “Everything is about that person. That means the caregiver’s needs often go unnoticed, and they suffer. Relationships within the family and with friends are deeply impacted. Relationships with the community and with employers can be impacted.”
Schizophrenia affects us all, directly or indirectly. Even if you don’t know someone with schizophrenia personally, it has a significant impact on our healthcare system. Schizophrenia is one of the leading reasons for hospitalization for mental illness, accounting for 19.9 per cent of general hospital stays and 30.9 per cent of psychiatric hospital stays.
Knowing these numbers allows us to better advocate for added funding, services, and more detailed data for our community. This updated prevalence rate reflects the need for more funding, services, and detailed data about schizophrenia so we can better help those with it, their families, and the healthcare system at large.
Alex Wyatt is a communications coordinator with the British Columbia Schizophrenia Society.