Schizophrenia and Caregivers

Like other medical conditions, schizophrenia can range from mild to severe

Caring for someone with Schizophrenia has its own set of unique challenges. At times, it can make you feel like you’re not trying hard enough as a caregiver.

However, here’s something you should take note of:

If you are caring for someone with a mental health condition, know that you are making a huge difference in the person’s life and helping them live a better life.

Schizophrenia is a severe mental illness that impairs one’s ability to think clearly, manage emotions, make
decisions, and interact with others. So learn as much as you can. The more information you have, the better prepared you will be to deal with it.

Dr. Firdaus binti Datuk Abd Gani, Lead for Circle of Hope and Head of Department of Psychiatry and Mental Health at Hospital Sultan Haji Ahmad Shah, Temerloh, shared with us on Schizophrenia and caregivers.

Dr. Firdaus binti Datuk Abd Gani, Lead for Circle of Hope, Head of Department of Psychiatry and Mental Health, Hospital Sultan Haji Ahmad Shah

Schizophrenia, a long-term mental health disorder can occur at any age, and anyone can get it.

1Twenty80: What are the causes of schizophrenia?

Dr. Firdaus binti Datuk Abd Gani: Schizophrenia is a form of mental health illness that triggers hallucinations (schizophrenics may hear, smell, see, touch or feel things that are not there) and delusions (they have fixed beliefs that something is true despite evidence to the contrary).

Research has not identified one single cause of schizophrenia. However, what has been identified so far is, the main cause of mental health illness, which includes schizophrenia, is the dysfunction of the brain.

The dysfunction could be attributed to imbalances in the secretion of neurotransmitters, meaning the chemical messengers in our nervous system, brain damage due to injury, tumour infection, stress or abnormal hormone secretions. Like other medical conditions, schizophrenia can range from mild to severe. Patients of schizophrenia are able to fully recover with specialist mental health care and effective caregiving.

1Twenty80: At what age does schizophrenia present itself?

Dr. Firdaus: Schizophrenia, a long-term mental health disorder can occur at any age, and anyone can get it. It affects one in 300 people (0.32percent) or 24 million people worldwide. The World Health Organization (WHO) reports that around 20 percent of the world’s children and adolescents have mental health disorders. In Malaysia, the National Health Morbidity Survey 2015 showed the incidence of mental illness has risen from 10.7 percent in 1996 to 29.2 percent in 2015 with one in three adults suffering from depression. Many more adults were potentially under-diagnosed while 12 percent of children were diagnosed with mental illness.

1Twenty80: Does schizophrenia worsen with age?

Dr. Firdaus: Schizophrenia affects the brain and can accelerate ageing. But it is possible to keep the symptoms at bay with treatment and self-care. Symptoms of schizophrenia typically appear in late adolescence or early adulthood but it is not clear so far whether the condition can worsen throughout a person’s lifetime.

1Twenty80: What triggers schizophrenia? Dr. Firdaus: Research indicates a combination of physical, generic, psychological and environmental factors can make a person more likely to develop schizophrenia. Highly stressful or emotional life events may also trigger the medical condition. For example, the Covid-19 pandemic has exacerbated matters. In a local study conducted among 1,163 adults in August-September 2020, symptoms such as depression (59.2 percent), anxiety (55.1 percent) and stress (30.6 percent) were detected.

1Twenty80: Do schizophrenics need a caregiver?

Dr. Firdaus: People with mild schizophrenia may not need a caregiver. However, those with the severe condition certainly need a caregiver to keep them from the negative consequences of the illness. Caregivers who are supported are likely to improve the quality of care and reduce the chances of relapse for people with schizophrenia.

In Malaysia, the Circle of Hope caregiver support initiative empowers caregivers through support and information to equip them to assist the patient’s journey towards rehabilitation and recovery.

1Twenty80: How does schizophrenia affect daily life?

Dr. Firdaus: Schizophrenia affects the way a person with this mental illness thinks and copes with daily life. The person may experience hallucinations, delusions, disorganised thinking and low motivation for daily activities. Other symptoms include poor attention and inability to experience pleasure. Poor social skills and abnormal behaviours would affect the person’s social life. As for family life, the person may be emotionally unavailable because of preoccupation with mental stress. As a result, family members may feel rejected and lonely.

Schizophrenia affects the way a person with this mental illness thinks and copes with daily life.

Dr. Firdaus binti Datuk Abd Gani

1Twenty80: How do you take care of someone with schizophrenia?

Dr. Firdaus: As a caregiver, you have to accept the person’s mental illness and its difficulties and challenges. Help the person feel better and enjoy life. Remain hopeful that the person can get better, live a full or meaningful life, and recovery is possible with your support and love. In addition, learning about schizophrenia and its treatment will enable you to cope with its symptoms, manage setbacks, and work towards the person’s recovery.

If you can’t do it all, seek help where you can. The Circle of Hope is a place you can reach out for help that gives caregiver support, information and advice to equip you to assist the patient’s journey towards rehabilitation and recovery. Your caregiving role also involves reducing stress for the person as stress can cause schizophrenia symptoms to flare up. Also, encourage independence and self-help if the person is able to do things independently. And remember to pay attention to your own health. You won’t be of much help if you are unwell and exhausted.

1Twenty80: Is there anything in particular that should not be said in front of a schizophrenia patient?

Dr. Firdaus: Don’t say things that make them feel bad for having schizophrenia. This is because it is a mental illness and it is not their fault. In short, don’t blame them. Avoid saying hurtful, rude and negative words that hurt their feelings or make them feel ashamed about their condition. If they are in an agitated state, don’t shout at them so as not to increase their stress.

Don’t say things that make them feel bad for having schizophrenia. This is because it is a mental illness and it is not their fault. In short, don’t blame them.

Dr. Firdaus binti Datuk Abd Gani

1Twenty80: Could you share some of the common everyday struggles of caring for someone with schizophrenia?

Dr. Firdaus: Common everyday struggles include juggling with many different responsibilities such as the need to understand the illness and the broad range of behaviours and to determine how best to provide care without creating undue stress.

The illness can take an emotional toll on both the caregiver and patient such as feeling frustrated, angry or helpless. A person with schizophrenia may need help with basic daily life tasks like eating and dressing. A part of the caregiver’s role is to help with such tasks. You also need to schedule appointments, transportation to appointments, and create routines and a predictable environment to reduce stress for the person.

1Twenty80: What would your advice be to someone who is caring for a schizophrenia patient?

Dr. Firdaus: Caregivers to schizophrenia patients also need care because they have an increased risk for depression, anxiety and extreme stress. Caregivers are prone to increased psychological distress due to the burden and highly challenging task of caregiving. First and foremost, stay healthy because it’s hard to care for another person if you yourself are in poor health. Take care of your own emotional, mental and physical health. Have time for yourself to prevent burnout such as emotional exhaustion. Also, get enough sleep. Join support groups where members offer each other emotional support, information and advice. Take advantage of support services. One such group is the Circle of Hope caregiver support initiative.