Schizophrenia affects approximately 24 million people worldwide (1). It impacts not only the individuals diagnosed but also their families, friends, and caregivers, who all play important roles in managing the condition across emotional, mental, social and physical challenges. Importantly, combating stigma.
Schizophrenia is a multi-faceted condition and often demands both medical intervention and emotional support from loved ones, said Vanessa Snow, Head of Medical Affairs at Johnson & Johnson Innovative Medicine South Africa. “It is not just a medical condition; it is a brain illness that needs a holistic approach,” said Snow. “While professional care and medication are important, the role of family and caregivers cannot be underestimated. Their support can significantly enhance treatment outcomes and the individual’s quality of life”.
The misconception that schizophrenia is linked to violent behaviour or a “split personality” is one of the many aspects of stigma that prevent effective support for people suffering from it. “Schizophrenia usually happens in episodes. It often starts with early warning signs, then there are periods of intense symptoms like hallucinations or delusions, followed by times when symptoms get better or disappear,” Snow shared. (2) “This cycle can happen many times, and the key is recognising that the behaviours people with schizophrenia exhibit are symptoms of a mental health disorder, not deliberate actions.”
Medication non-adherence is a significant challenge and some of the best support is simply to aid someone to stick to the script. When medication is not taken as prescribed, it can lead to side effects, increased paranoia, a lack of insight into the illness, and a higher risk of relapse, hospitalization, or dangerous behavior. (3) “It’s easy for individuals with schizophrenia to become overwhelmed by the side effects or feel disconnected from the reality of their condition. As caregivers, we must help by reminding them of appointments, providing transportation, and engaging with their healthcare providers,” she said.
Creating a stable and low-stress environment at home is important. Stress is known to trigger relapses and exacerbate symptoms. (4) “It’s essential to maintain a peaceful, predictable atmosphere,” Snow noted. “Simple things like clear communication and consistent routines can greatly reduce anxiety and confusion. Additionally, households with high levels of criticism and anger have been associated with higher relapse rates, so it is important to nurture an emotionally supportive environment.” (5)
People with schizophrenia can struggle with complex language and cognitive processing, which makes it essential for caregivers to use clear, concise language. (6) “Be direct, allow time for responses, and avoid conflict, especially in stressful moments,” she said.
Record keeping is key. “Caregivers should keep a journal that details any changes in behaviour,” Snow said. “By noticing and addressing tell-tale signs, caregivers can help ensure timely intervention before the situation worsens.”
Caregivers should also exercise self-care. They often experience burnout, emotional stress, and anxiety, all of which can negatively impact their ability to provide care. “Research has shown that when caregivers prioritise their own well-being, they are better equipped to provide sustained, effective care for their loved ones,” (7) she said.
“Social stigma remains one of the biggest challenges for individuals with schizophrenia,” (8) Snow added. “As caregivers, we can help reduce stigma by advocating for inclusive community programmes, employment opportunities, and rehabilitation services.” Community-based services that offer comprehensive support closer to home have proven to be more effective than institutional care in managing schizophrenia in both South Africa and globally, she noted.
