How Aphasia Isolates Stroke Survivors

Passengers woke to the sound of many voices.

I am part of the CAEF (Community Assistance Ecosystem Framework) research team from several universities in Indonesia and Australia. Our team designed a web-based application for stroke sufferers and caregivers in Manado and Gorontalo, sponsored by KONEKSI.

Some stroke patients we interviewed experienced aphasia. Nevertheless, they appeared to enjoy conversations and attempted to respond to every question using hand gestures and sounds, even if they were unclear. We allowed more time for patients to answer questions. Their facial expressions and gestures showed a strong desire to communicate and be heard. We even invited our patients to sing and watch videos they enjoyed.

Aphasia, or the loss of speech ability due to a stroke, may be the most neglected type of disability. This post-stroke disorder appears later in life rather than being congenital. As a result, stroke survivors often deny it by isolating themselves or refusing to engage in activities associated with physical disability. They believe this condition will pass, even though post-stroke disabilities, particularly aphasia, rarely fully recover.

In Indonesia, stroke is the cause of 350,000 deaths every year. High morbidity is formed because stroke results in long-term disability for half of those affected. Patients who survive are at risk of permanent impairment, such as paralysis of limbs, especially if not treated immediately.

Physically, the impact of stroke affects almost all aspects of a patient’s life, depending on the location and extent of brain damage. Stroke sufferers may experience difficulty finding words, understanding conversations, remembering things, concentrating, or controlling emotions.

The American Speech-Language-Hearing Association (ASHA) states that approximately 30%-40% of post-stroke patients experience aphasia. However, reports of aphasia incidence remain low because it is often masked by other more visible stroke symptoms, such as paralysis or loss of consciousness.

In truth, aphasia does not affect the intelligence level of survivors. Aphasia patients do not suffer from cognitive impairment but struggle to express their thoughts. Some stroke survivors with a decade of aphasia can still recognise family members’ faces, know what they want to say, and may even have constructed sentences in their minds. However, when they open their mouths, the words that emerge do not match their intentions. They know, but they find it difficult to express.

This is where the problem lies: when someone takes a long time to answer a question, we often become impatient, taking over the conversation or asking family members to answer while the stroke survivor remains silent. People assume they are confused or do not want to speak, when in fact, they may be struggling intensely to utter a single simple sentence.

Aphasia disorder also has a gender dimension. In patriarchal societies, men are expected to convey their views directly and openly. Conversely, in formal meetings, women’s voices are often represented by men. When a man suffers a stroke and experiences aphasia, the level of social pressure increases due to the difficulty of expressing his thoughts. Consequently, they may find it harder to control emotions, become more aggressive, and it can lead to violence against partners. Conversely, the social perception that women are not adept at expressing views makes it even harder for women with aphasia to express their feelings or thoughts.

Whether male or female, sufferers of aphasia often face greater challenges in their social environments than just difficulty speaking. They feel ashamed, lack confidence, and avoid conversations for fear of mispronouncing words or making it difficult for others to understand them. They also fear becoming the subject of jokes. As a result, they withdraw further from their social environment, feeling isolated and cast out from society.

Communication disorders can alter social relationships, work, family roles, and even how a person perceives themselves. The change in identity for stroke survivors with aphasia demonstrates how vital language and communication are in shaping an individual’s identity. When verbal ability changes, a person faces the process of rebuilding their identity.

Senior comedian Tukul Arwana suffered a brain haemorrhage in 2021, which resulted in speech difficulties. This condition forced him to retire from the entertainment industry to focus on various therapies and treatments. To date, his condition is gradually recovering, and he is able to communicate again. The support of family and loved ones has played a significant role in his recovery.

A head of a household, once a decision-maker, suddenly finds it difficult to express opinions; someone who once enjoyed socializing with relatives begins to avoid them because they cannot follow a conversation; or a mother who loved giving advice or was the loudest voice in the house now remains silent or speaks unclearly.

Aphasia makes a person dependent on others, not because they have lost the ability to perform activities, but because they struggle to explain their needs or communicate with others. In such situations, families may take over various decisions, potentially stripping the patient of control over their own life.

The role of the family is crucial as they are the ones interacting most frequently with the patient. Rather than taking over all communication, families need to learn to give patients the opportunity to express themselves. They need to learn to wait patiently for answers and use simple questions, pictures, or gestures to ensure the patient can understand the message.

Aphasia patients have the right to receive information and be involved in decisions regarding their condition through an aphasia-friendly communication approach. We need to stop measuring a person’s intelligence solely by the fluency of their speech.