How to Improve Communication Between Stroke Patients and their Caregivers

How to Improve Communication Between Stroke Patients and their Caregivers

shutterstock_410076634Stroke can affect one’s ability to communicate so overcoming language difficulties between patient and caregiver is an essential part of stroke recovery.

FFC speaks to the Head of Speech Pathology and Associate Professor Elizabeth Cardell PhD, Griffith University in Australia on the importance of communication and socialisation for the stroke patient.

(Q) What are the chances of stroke affecting the ability to understand and process language in stroke patients?

(A) Aphasia is defined by difficulty understanding and expressing spoken or written language and is common, occuring in around 33 to 28 percent of people following a stroke. If the stroke occurs on the left side of a person’s brain, there is a much higher chance of aphasia occurring compared to a stroke in the right side of the brain. Around one in 250 people are living with aphasia in developed countries. Worldwide, around 15 million people suffer a cerebrovascular accident (stroke) each year. Approximately 60 percent of people initially diagnosed with aphasia have continuing communication issues one year after their stroke. The world population is ageing so the number of strokes is expected to increase in the future.

(Q) How does stroke affect one’s ability to understand and process language?

(A) The brain has specialised areas that control different behaviours and functions. Understanding speech and language and finding the words and sentences to speak are controlled by known, well-defined areas of the brain. If a stroke affects the parts of the brain responsible for language functions, aphasia occurs. The effect of the damage is to make information about words (sounds, meaning) difficult to access in the delicately-timed and rapid windows required for normal language processing. Generally, language functions are located in the left side of the brain. Therefore, a left-sided brain event is more likely to result in aphasia than a right-sided event. Also, depending on where the stroke has occurred, different types of aphasia may arise. For example, some people may say lots of words fluently but they do not make sense. Other people may speak non-fluently, using single words, devoid of sentences and grammar. Some people have good comprehension; others have poor comprehension. If the reading and writing areas of the brain are affected by the stroke, difficulties in these domains also will be present. Hence, how language is affected hinges on where the damage has been in the brain.

(Q) How can aphasia affect the communication between patient and caregiver?

(A) Aphasia can have devastating effects on both the person and the carer during their interactions. The person with aphasia often knows what they want to say, but is unable to “get it out” or the words are “coming in from everywhere”. The person may not be able to understand what the carer is telling them, and knows this. Verbal interactions can stall, become stilted and one-sided, and guesswork can appear. Often neither person’s needs are satisfied.

Insight into their difficulties can make people with aphasia feel many emotions – frustration, anger, and sadness. Indeed, depression is twice as likely to occur in people with aphasia as in stroke survivors without aphasia. In addition, people with aphasia often feel a strong sense of loss – loss of their identity as a communicator and as a person. Clearly, all these reactions impact on carers and can make them feel helpless, frustrated, angry, and sad. All these emotional reactions will change the dynamics of communication.

Sometimes people with aphasia want to be assisted with “finding the word(s)”, while other people find this assistance intrusive and disrespectful – they want to do it themselves! It is important to understand these lines and assist when the person wants assistance.

Associate Professor Elizabeth Cardell, Head of Speech Pathology in Griffith University in Australia

Associate Professor Elizabeth Cardell, Head of Speech Pathology in Griffith University in Australia

(Q) What are common misconceptions of aphasia?

(A) Arguably, the foremost misconception is that people who have aphasia are in some way mentally affected and have lost their intelligence. Unless the damage has been very extensive, people with aphasia have difficulties with language and language alone. The person is the same, intelligent individual as they were before their stroke and their aphasia.

An ongoing fallacy is that the words and language are “lost” in aphasia. Unlike dementia, where true loss and degradation of information occurs over time,  the information is represented in aphasia  but is difficult to access in a timely manner, due to under-activity, over-activity, or general processing impairments. Hence therapy does not re-teach words. Rather, therapy modulates and strengthens existing representations to a point where they are easily available for the speaker.

Another misconception is that without good language abilities there is little hope for a rich, productive life. Many people currently are very successfully living with aphasia. For some, treatment continues and positive gains continue to be made. For others, whole communication has been embraced (that is, not just spoken communication) to get their messages across. People with aphasia can be active and proactive contributors to society.

A final misconception is that people with aphasia need to be protected from complex communication situations. This is an understandable reaction. We all have the desire to protect when a loved one is vulnerable. However, people with aphasia need to be out in the world, participating in typical social interactions to the best of their ability. They may not be able to contribute much at the outset but, over time and as they improve, their contributions and confidence will grow. Use it or lose it and use it to improve it are essential from a social and therapeutic perspective.

Unfortunately, there is no cure for aphasia. People recover to varying degrees, and people who receive language therapy have better language and well-being outcomes than people who do not receive therapy.

(Q) How can the caregiver be better equipped with dealing with stroke patients with aphasia?

(A) Already, much is being done to educate people with aphasia and carers about the impact that aphasia can have on them. Such education is critical. Caregivers need to realise that socialisation for their loved one is extremely important; caregivers also need to be prepared to take on the role as an advocate – for services, support, resources. Attendance at support groups for people with aphasia and groups for caregivers can be eye-opening and rewarding. Knowing that you are not alone is very powerful, and learning from others who have walked in your shoes can be inspiring and liberating.

Caregivers also can be given training by speech pathologists to enhance their communication skills and interactions with people with aphasia. This specialised training has good evidence behind it. Also, speech pathologists can teach caregivers how best to use alternative communication devices and aids (e.g., communication boards, computer, Apps) with individuals to optimise two-way communication.

(Q) What are the newer technologies and innovations that are helping stroke patients with aphasia achieve better and faster rehabilitation?

(A) The last decade has seen a greater understanding about the brain and its behaviour and new insights into how therapy can change the brain. Neuroimaging has been influential here. The last decade also has seen much more evidence around treatments for different types of aphasia.

However, there is no magic wand that can guarantee positive results or speed up treatment outcomes. What has become clearer are two key issues: (1) treatment may need to be different at different points in time following aphasia to account for different neurobiological recovery processes and different client needs and priorities, and (2) treatment needs to be sufficiently intense and/or long enough to induce long-term change.

In hospitals and other rehabilitative institutions, traditional face-to-face treatment sessions may not be possible or sustainable due to competing demands on the relevant medical professionals. To this end, the value of group therapy has been widely explored, and computerised, App-based, and online therapies are emerging as useful adjunctive therapies, especially when individually tailored to a person’s unique needs.

Building further capacity in treatment intensity through therapy led by volunteers, allied health assistants, and students also shows promise. Also, the tyranny of distance is no more, with videoconferencing platforms such as Skype and WebEx allowing the delivery of treatment directly into people’s homes.

(Q) How can neurorehabilitation contribute to managing aphasia in patients?

(A) Neurohabilitation is a complex medical process which aims to aid a patient recovering from a nervous system injury, and to minimise and/or compensate for any functional alterations resulting from it. In stroke patients suffering from aphasia, neurorehabiltation targets impairments in a focused manner, thus promoting experience-dependent neuroplasticity; neuroplasticity being the ability of the brain to form and reorganise connections, especially in response to learning or experience or following injury.

However, the outcomes of improved language and communication can have a profound impact on the persons’ well-being and participation in life, and greater participation in life and enjoyment is the true measure of the success of any treatment.

Aphasia therapy starting within the first three months after the stroke has been shown to have benefits over spontaneous recovery, with some studies showing twice the recovery effect size of untreated individuals. Therefore, early neurorehabiltation is vital. However, there also is compelling evidence that shows aphasia therapy, when delivered using neurorehabiltation principles, can increase language, participation, and quality of life irrespective of how long ago the stroke occurred.

(Q) How can managing aphasia contribute to a stroke patient’s overall rehabilitation?

(A) Having aphasia can be perceived to be a barrier when undertaking other forms of rehabilitation, such as the physical therapies, as these all involve language in their implementation. However, most people with aphasia are able to copy and fully participate in other therapies as once they work past what needs to be done from the verbal messages, the person’s memory, motivation, intelligence and so forth is the same as pre-stroke. It is important that the speech pathologist spends some time working alongside the physical therapists, in a true inter-disciplinary manner, and provides these other health professionals with valuable tools to optimise their interactions and communication with people with aphasia.

People with aphasia want to speak, and in an ideal world treatment should be for as long as it needs to be. However, with today’s resourcing demands and constraints, this often is not possible. People will not be discharged from hospital if they are not safe, and poor communication can result in people remaining in care. Therefore, it becomes even more important to ensure that people with aphasia have access to treatment, with sufficient intensity. Often too, aphasia persists more severely and longer than the physical disabilities from a stroke. Again, the issue of treatment access is an imperative. Anecdotally, I have had more than handful of people with aphasia reveal, “I was frustrated that I couldn’t walk, but what really got to me and upset me was not being able to talk…” Communication is a basic human right. We now have good evidence. We can move forward, confidently, and start to give back that right to people with aphasia.

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