Abhishek BP, Assistant Professor in Language Pathology, Centre of Speech Language Sciences, AIISH Mysuru.
Samritha Sanjay, Preethi L, Abhishek BP, (2024). Understanding Aphasia from the perspective of caregivers. Neurons and Neurological Disorders. 3(2); DOI: 10.58489/2836-8851/021
© 2024 Abhishek BP, this is an open-access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Caregiver training, sensitisation, dynamics, recovery, facilitation, interplay.
Caregiver dynamics is a crucial in the management of aphasia and this factor is found to critical for effective communication and rehabilitation. It is noteworthy that caregivers of persons with aphasia often navigate complex emotional landscapes, hence it becomes important to provide practical support and emotional re assurance to the caregivers. The caregivers tend to play major role in facilitating the recovery in persons with aphasia. Overall, the interplay between caregivers and those with aphasia is essential for enhancing communication and promoting overall well-being. Hence understanding aphasia from the perspectives of caregivers and caregiver training becomes important in the clinical practice of a Speech Language Pathologist.
Aphasia is described as the loss or impairment of language abilities resulting from brain damage, affecting the brain's capacity to interpret and generate language symbols. As a disorder affecting a multitude of domains, aphasia can impact various aspects of communication, including speaking, reading, and writing, and can lead to frustration, anxiety, and social withdrawal, this further can impede their communication difficulties and hinder their overall quality of life [1]. Arteriosclerosis, ischemic strokes, TIAs, hemorrhagic strokes, brain trauma, oedema, necrosis, and brain tumours collectively disrupt blood flow and cause damage to key language-processing areas in the brain. These factors impair communication abilities, leading to or aphasia, with some conditions potentially causing permanent deficits [2].
Aphasia is a generic term referring to a cluster language deficits with core and associated impairments varying by subtype. Broca's aphasia is the most predominant type of aphasia marked by agrammatism, resulting in slow, effortful speech, while Wernicke's aphasia is contrastingly different and involves phonological discrimination and verbal memory impairments, leading to fluent but incoherent speech. Conduction aphasia is characterized by repetition difficulties, and extra-sylvian sensory aphasia disrupts semantic processing. Extra-sylvian motor aphasia affects pragmatic language use. These deficits span phonetic, phonemic, semantic, and pragmatic levels, highlighting the intricate relationship between brain function and language abilities [2].
Aphasia imposes a significant emotional and psychological burdens on caregivers, not just on patients themselves. This emotional burden of caregiving is profound, as caregivers often endure stress, anxiety, and guilt, leading to isolation and burnout. These challenges are further worsened by time constraints, financial strain, and the complexities of navigating healthcare systems, along with the physical demands that can impact their health, highlighting the need for support for those who care for others. The extent to which caregivers perceive their mental and physical health, social life and financial status as suffering is known as caregiver burden [3]. If these emotional issues in caregivers is not addressed, it can negatively affect the quality of life for both the person with aphasia and the caregiver. For instance, a study involving 30 spouses of individuals with aphasia used the Family Aphasia Measurement of Life Impact (FAMLI) questionnaire and interviews to assess the effects on their lives. It revealed significant negative impacts on communication, emotional well-being, daily life and social interactions. Spouses reported overwhelming burden and loss in their relationships, particularly in communication and emotional domains, underscoring the need for targeted support [4].
The literature review identified 14 relevant studies on caregiver strain and burden for stroke survivors, across the globe. Results indicated that advanced education and higher income correlated with reduced feelings of caregiver burden. Different measures/ instruments, including the Caregiver Strain Index (CSI) and Zarit Burden Interview (ZBI), assessed caregiver strain, revealing that the strain and burden experienced by caregivers varied significantly based on demographics and caregiving responsibilities [5]. Persons with aphasia also they have associated problems like swallowing issues, confusion, frustration, loneliness and communication problems. Hence it becomes important for the caregivers to be aware of the conditions and co-morbid conditions [6].
The studies demonstrate that SLPs should incorporate the process of sensisting and, educating the caregivers of persons with aphasia on effective communication strategies, and personalizing therapy plans to ensure caregiver availability and involvement. Also, the emotional well-being should not be a priority. It is also important to understand the perspective of person with aphasia,
Moreover, such emotional challenges can hinder the effectiveness of language interventions for patients, highlighting the need for a holistic approach that includes caregiver support in the therapeutic process. Speech-language pathologists (SLPs) should be proactive in identifying the challenges faced by caregivers and addressing their needs through appropriate interventions and support. Understanding caregivers’ approaches to the aphasic condition is essential during speech and language interventions, as it can help mitigate their burden.