Why So Many People With Schizophrenia Go Untreated

Schizophrenia is a serious, chronic mental disorder that causes an abnormal interpretation of reality, involving symptoms such as hallucinations, delusions and disordered thinking, among others.

While living with untreated schizophrenia can lead to serious complications and impair daily function, early treatment can help prevent these complications and provide long-term management for symptoms. The Treatment Advocacy Center reports that an estimated 2.6 million adults in the United States suffer from schizophrenia, while the World Health Organization (WHO) states that about 20 million people have the disorder worldwide.

Unfortunately, many people with schizophrenia don't get the care they need each year. The Treatment Advocacy Center reports that about 40 percent of people with schizophrenia go untreated each year in the U.S. Furthermore, the WHO found that 69 percent of people with schizophrenia globally don't receive appropriate care for their disorder.

This widespread lack of adequate care is particularly concerning, as experts have found that those with schizophrenia are two to three times more likely to die at an early age than the general population because of preventable diseases. They're also more vulnerable to abuse.

Diane McIntosh, a psychiatrist and clinical assistant professor at the University of British Columbia, said that aside from lack of access or resources, one of the main reasons people go untreated is because of the nature of the disorder itself.

"They usually have paranoia and delusions, and lack insight on their condition because they don't realize they are experiencing reality in a different way," McIntosh explained. "And, of course, the auditory hallucinations, what they hear as voices, may be telling them what to do, or they might think the treatment is harmful or medications are poisonous. Sometimes the voices may be telling them that their doctor wants to kill them or trying to do something against them….So lacking insight and the nature of the condition can make getting someone into treatment more difficult."

Similar to other mental disorders, experts don't know the exact causes of schizophrenia. However, researchers believe genetics, brain chemistry and environmental factors can contribute to its development.

"What's important to know is that every mental illness is caused by a variety of factors—there's no one thing that causes any mental illness," McIntosh said.

McIntosh noted that she looks at risk factors for mental illness as three big buckets. The biological bucket consists of traits like genetics, brain chemicals and hormones, while the psychological bucket includes factors related to a person's temperament, as well as their coping skills and resilience. The third bucket investigates social and environmental factors like life experiences, access to resources, relationships and more.

"All those buckets can carry different weights, depending on what kind of mental illness you're talking about," McIntosh explained. "With schizophrenia, the biological bucket is a little bit heavier, meaning biological factors play a bigger role. But that's not 100 percent of the puzzle. Things that happen in those other buckets can also influence the biological bucket. For example, childhood trauma can increase your risk for mental illness. Another example is that THC and cannabis, for some vulnerable brains, can turn on genes that provoke the onset of schizophrenia in a vulnerable system."

Experts have found that people with schizophrenia experience problems with natural brain chemicals, including the way that the neurotransmitters dopamine and glutamate behave. Additionally, studies have found differences in the structure of the brain and central nervous system in those with schizophrenia. While the significance of these differences isn't known, it does confirm that schizophrenia is a disease of the brain.

Other significant risk factors for schizophrenia include having a family history of the disorder, as well as pregnancy and birth complications that involve malnutrition or brain development impacted by certain toxins or viruses. Taking psychoactive or psychotropic drugs during teen years or young adulthood has also been associated with being at a greater risk for developing schizophrenia.

Generally speaking, schizophrenia causes problems in the way an individual thinks, behaves and feels. Though symptoms vary in type and degree depending on the case, most people with schizophrenia experience delusions and hallucinations.

According to the National Institute of Mental Health, schizophrenia symptoms generally fall into the following categories:

• Psychotic symptoms: These symptoms typically include altered perceptions of reality as well as abnormal thinking and behavior. Included in this category are auditory or visual hallucinations in which someone hears voices or sees things that are not really there. It also includes delusions, which are firmly held beliefs that are not supported by objective facts. Delusions are often paranoid in nature, and can cause a person to feel like they're in danger and that something or someone is out to get them.
• Negative symptoms: Schizophrenia can lead to loss of motivation, disinterest and lack of joy in daily life, social isolation, difficulty communicating and functioning, as well as an overall reduction in emotional expression and speaking.
• Cognitive symptoms: Symptoms that affect cognition can lead to difficulty focusing and memory problems, as well as an impaired ability to make decisions or process information.

Over time, the types of symptoms a person experiences, as well as their severity, can change, though some symptoms may persist, according to the Mayo Clinic. For women with schizophrenia, symptoms tend to begin in a person's late 20s, while they typically manifest for men in the early to mid-20s. That being said, in some rare cases, children and people older than 45 can be diagnosed with schizophrenia.

Given that it's typically difficult for a person with schizophrenia to recognize the condition in themselves, it often falls to loved ones to recognize the signs and symptoms, and to encourage the person to seek help.

"It can be difficult if they have no insight regarding the fact that they are experiencing symptoms or delusions because you can't talk someone out of a delusion," McIntosh said. "And you shouldn't agree with a delusion, but you can talk to them in a manner that says, 'You know, I know this is very upsetting. I see it in a different way. But I think we can definitely get some help.' And the best place to go is to your family doctor or your nurse practitioner because they'll be able to know what the most accessible mental health care is in your area."

It's important to know that suicidal thoughts and behavior are common in people with schizophrenia. If your loved one is a danger to themselves or anyone around them, call 911 or whatever the nearest emergency services in your area are. In some cases, an individual may not be suicidal but may still be in need of emergency help if they are unable to take care of or provide for themselves. If this is the case for your loved one, you should call your local mental health authority for help. Depending on the severity of symptoms, sometimes emergency hospitalization is necessary.

Treatment for schizophrenia typically involves a combination of antipsychotic drugs and psychosocial therapy. Because schizophrenia is a chronic disorder, ongoing treatment is necessary to manage symptoms and avoid complications. Antipsychotic medications can cause a variety of side effects, including sexual dysfunction, according to researchers. If you're concerned about any side effects caused by your medication, be sure to talk to your doctor as they may be able to adjust your dosage or switch you to a different medication altogether.

Since schizophrenia is such a complex condition that affects all parts of daily life, treatment is usually carried out by a combination of mental health professionals, which can include a psychiatrist, a social worker, a psychiatric nurse and a case manager who can help coordinate all the different parts of treatment.

"We know that most people who are living with schizophrenia benefit from a multidisciplinary community-based team that puts their needs and the needs of their family first," McIntosh explained. "Treatment is most likely to be successful if the patient is working with people who actually have a deep understanding of schizophrenia and can help to guide the family to be loving and supportive and, ultimately, encourage the person to participate in their own care."

Based in British Columbia, Canada, Ashleigh Singleton, a mental health advocate and community educator on schizophrenia who has lived with the disorder herself for more than 20 years, said the biggest pillar of her journey through treatment has been having a strong emotional support system in her family. Singleton also said that finding the right medication and becoming involved in a local psychosocial rehabilitation center for people with schizophrenia and other mental health issues helped her to get her symptoms under control and form meaningful relationships that have helped her throughout her treatment.

"My dad being there for me every step of the way has been pivotal for me in my journey," Singleton said. "For several years after the psychotic break that led to my diagnosis, my dad really encouraged me to go to the center. So I started going there in 2010, and it's just unbelievable. You know, that place saved my life. Like, finally, I was able to make friends again and get back into the world and the land of the living, as I like to call it."

Singleton said that since her diagnosis, she has run into plenty of people who have misconceptions about what schizophrenia is.

"Probably the most common one is when I tell somebody I have schizophrenia, they will say, 'Oh, so you have split personalities.'" she explained. "Or they think that it means that I have multiple personalities. One time I told someone I have schizophrenia and they said to me, 'So which Ashleigh am I talking to right now?'"

Singleton believes an educated public is a more compassionate and understanding public, which is why she has dedicated much of her life to telling her story. To do this, she works with the British Columbia Schizophrenia Society to deliver talks to educate local high schools, police departments and other parts of her community about what it's like to live with schizophrenia.

"It's great that there's a lot of conversations coming up about mental health now, because I didn't have that when I was a teenager and hearing voices and not knowing what was going on," Singleton said. "The main thing I want people to know about their family members or friends or anyone who has mental health issues is that we're people, too. We may have a chemical imbalance in our brain, but we still have thoughts and feelings, and it doesn't define who we are."