Aphasia is a communication disorder caused by brain damage. This is most often due to a stroke, head injury or brain tumours. People with aphasia, an invisible disability, often struggle with reading, listening, speaking or writing.
The recovery process after a stroke could be long and complex. Depending on the severity of the stroke, patients could be dealing with after-effects such as fatigue, muscle weakness, pain and balance issues.
In Singapore, around one-third of all stroke patients also suffers from aphasia, which makes recovery even trickier. Hence, caring for a loved one after a stroke doesn’t just involve physical challenges; there could also be behavioural, emotional and communication issues to contend with.
Ellen (not her real name) is a caregiver in her late 50s. She looks after her partner, Terence, who had a stroke in 2020.
She works long hours in a demanding operations job and gets help from part-time caregivers. While she’s at work; they oversee his daily exercise as well as his meals and sometimes run errands on his behalf.
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Aphasia – the additional complication to stroke recovery
"It also impairs his ability to analyse and synthesise information to make certain decisions pertaining to himself and his caregivers. It can often lead to friction and misunderstanding with the caregivers."
Credit: Sengkang General Hospital
Stacy Lum, speech therapist at Sengkang General Hospital, explains that patients with aphasia may experience difficulties (to different degrees) in understanding, reading, talking and writing.
From an impairment perspective, patients may experience difficulties such as understanding what others are saying to them or what they are reading, be it at word or sentence level.
It’s also hard for them to find the words to say something or they form fluent sentences that do not make sense when strung together. It’s also difficult for them to write down what they want to convey.
From an activity and participation perspective, issues include participating in everyday conversations as an equal, if their communication partners are not trained or supportive; engaging with friends and family in a group setting or in a noisy social setting; or partaking in roles they were previously in charge of in the family (e.g. grocery shopping, designated family driver, sole breadwinner).
And, from a personal standpoint, Stacy says they may experience emotions such as anxiety, frustration and feeling alone.
Speech therapy to help with aphasia
Speech therapy plays an important role in improving communication between patients and caregivers.
This includes the latest evidence-based techniques which rehabilitate impairment-based difficulties experienced by patients.
“And we offer communication partner training services to caregivers and patients to facilitate more effective communication between the two.”
Examples of Augmentative and Alternative Communication (AAC)
Communication disorders are invisible disabilities
This is because, unlike physical disabilities following a stroke (eg Hemiplegia/facial droop), it is hard for an untrained person to understand these difficulties, especially when the public sees the individual walking around in the community, able-bodied with no physical ailments, with no ‘obvious’ sign of an illness/injury.
There is also the challenge of having to first come to terms with their loved ones’ invisible disability and then learning to advocate for them.
"For example, disputes started at stores in the shopping mall because former patients were not able to understand what was being said to them and were misunderstood to be intentionally making things difficult for staff."
Hoosainsah is the sole caregiver to his 61-year-old brother who had a stroke a year ago and was diagnosed with aphasia after that. Although his brother is now mobile, he still suffers from aphasia.
"As I see him only once a week due to work, I am worried during the period when he is alone and how he will sustain himself financially."
During his weekly visits, Hoosainsah prepares his brother’s diabetes medication, engages him to do household chores, takes him for walks and also to meet his friends and relatives. He also arranges and accompanies him to medical appointments and therapy sessions.
Because living with invisible disabilities presents unique challenges that may not always be immediately apparent to others, Ellen thinks it’s important for people in Singapore to recognise that, just because someone doesn’t outwardly appear to have a disability, it does not mean they aren’t facing significant challenges.
This article is part of a series on invisible disabilities, an umbrella term that refers to types of disabilities, chronic conditions or medical/neurological conditions that are not immediately apparent to others. We seek to understand more about these invisible disabilities and how we, as loved ones or as general members of society, can better support others going through it.
