By: Khomotso Fredah Matlala

The Impact of Epilepsy Symptoms on Caregivers

The Impact of Epilepsy Symptoms on Caregivers

Chronic illnesses such as epilepsy do not only affect the individual living with it, but also those around the person. People living with epilepsy (PLWE) may experience epilepsy differently. Those who often experience frequent, unpredictable, or urgent seizures or seizures that are difficult to manage with medication, as well as children and elderly individuals may require additional care from others (Epilepsy Society, 2024). The caregivers that usually take care of the PLWE constantly ensures that they have the best quality of life by providing the necessary ongoing support to help with daily activities, medication management and monitoring of seizures (Datak et al.,2025). This include keeping them safe during seizures and handling the medical responsibilities that comes with living with epilepsy (Epilepsy Society, 2024; Datak et al., 2025). 

Although there is extensive research on epilepsy, most studies are focused on the medical and clinical management of the disorder, with less evidence showing the psychological and emotional consequences of taking on the caregiver role. This is important to investigate because, the emotional distress that caregivers experience is not only detrimental to their own mental health but can also have fatal consequences on the patient’s well being and quality of life (Datak et al., 2025). Thus, there is a growing recognition of the important role that caregivers play in the lives of individuals living with epilepsy. This paper aims to highlight the psychological impact of taking care of someone with epilepsy and ways in which carers can mitigate the risk of developing detrimental psychological disorders that may put them and the patient at risk. 

Caregivers as the invisible “patients”. 

The ongoing challenges of managing unpredictable seizures and the constant requirement for vigilance often disrupt and complicate established family dynamics. These shifts can manifest as marital or family conflicts and a noticeable decline in family cohesiveness (Yu et al., 2025). Because their own health needs are frequently secondary to those of the person they support, caregivers are often described as the “invisible” or “hidden” patients whose requirements are neglected by the medical system. Consequently, caregiver burden is recognized as a multidimensional response to the emotional, social, financial, and physical strain fundamentally rooted in the unpredictable nature of the disorder (Datak et al., 2025; Yu et al., 2025). 

The Impact of Epilepsy Symptoms on Caregivers 

The unpredictability of seizures creates an environment of chronic hyper-vigilance, where caregivers must remain constantly alert to provide safety and first aid. This need for continuous monitoring often leads to significant sleep deprivation and physical exhaustion, as caregivers may stay awake fearing nocturnal seizures or sudden unexpected death in epilepsy (Yu et al., 2025; Zhang et al., 2021). Research indicates that a high proportion of caregivers’ experience symptoms of mental health issues. One study found that approximately 47% of caregivers experienced anxiety and about 39.5% experienced depression (Datak et al., 2025). This highlights that taking care of someone with epilepsy increases the risk of developing adverse mental conditions. Additionally, witnessing a loved one experience a seizure has been frequently reported as a traumatic experience that may induce feelings of helplessness and constant fear of injury or death (Yu et al., 2025). 

Beyond internal distress, caregivers frequently grapple with “affiliated stigma,” where societal misconceptions lead to social isolation and restricted social lives (Yu et al., 2025). This stigma is often associated with the belief that epilepsy is contagious or spiritual in nature, causing neighbours or even other family members to distance themselves (Yu et al., 2025). Furthermore, the burden is exacerbated by financial instability; caregivers may lose productivity, reduce their working hours, or leave the workforce entirely to provide constant supervision, leading to a cycle of economic strain and increased stress (Yu et al.,2025)

The Interdependence of Health in Romantic and Family Relationships

Research studies highlight a “dyadic” interdependence in relationships where epilepsy is present, meaning the psychological health of the caregiver is closely linked to the patient’s clinical management (Datak et al., 2025; Van Andel et al., 2011).  Sources indicate that caregiver anxiety is a strong independent predictor of a poorer quality of life for the PLWE (Datak et al.,2025). When a caregiver is overwhelmed by depression or anxiety, they may struggle to provide the emotional reassurance and stability crucial for the patient’s well-being, or they may find it difficult to manage complex medication schedules and treatment plans effectively (Datak et al.,2025).

Interestingly, studies have found low-to-medium positive correlations between the quality-of-life scores of patients and their caregivers across various domains, including mental health and social functioning (Van Andel et al.,2011). This suggests that when a caregiver’s mental health improves, the patient often sees a corresponding benefit. Conversely, a passive coping style, characterized by avoidance or a submissive reaction to the disorder can explain up to 50% of the variation in a caregiver’s mental health scores (Van Andel et al.,2011). Because partners often adopt similar coping strategies, addressing the caregiver’s psychological health is a vital component of successful seizure management for the patient (Van Andel et al.,2011).

To navigate these challenges, specific resilience factors have been identified:

• Active Problem-Focused Coping: Strategies that involve proactively seeking medical information, planning for seizure events, and positive thinking are considered superior for long-term well-being (Van Andel et al.,2011; Silaule & Adams, 2024)).
• Family Resilience Framework: Higher levels of family resilience, including open communication and shared belief systems, act as protective factors that decrease the risk of depression (Zhang et al., 2021)
• The Risk of Avoidance: In contrast, passive reaction patterns or avoidance-based coping (ignoring the problem or reacting submissively) are strongly correlated with lower mental health scores and higher perceived burden. In some studies, a passive coping style explained up to 50% of the variation in a caregiver’s health-related quality of life (Van Andel et al., 2011)

Strategic Management for Partners & Caregivers

Managing the psychological health of the caregiver is essential for the stability of the entire family. To mitigate the risk of developing detrimental psychological disorders, caregivers and their partners should implement the following strategic protocols:

• Comprehensive Psychoeducation: Caregivers must be adequately equipped with knowledge regarding seizure first aid (the “3 C’s”: Calm, Cushion, Call) and medical management. Knowing how to keep a patient safe reduces feelings of helplessness and panic during an attack (Musekwa & Makhado, 2023; Kanemura, 2026
• Prioritizing Self-Care and Sleep Hygiene: Caregivers must prioritize their own rest and physical health to prevent burnout. Accessing respite care services is critical to provide caregivers with necessary breaks, though such services are often more available for children than for adults (Epilepsy Society, 2024; Okiah et al,2023 Datak et al.,2025; Yu et al.,2025).
• Establishing Support Networks: Connecting with others through support groups helps normalize the caregiving experience, provides a space for emotional ventilation, and reduces the isolation caused by social stigma (Molchanova, 2025)
• Professional Intervention: Specialized counseling, such as Cognitive Behavioural Therapy (CBT) or relaxation therapy, is recommended to address the unique trauma of witnessing seizures and to improve dyadic communication (Molchanova, 2025; Ernest et al., 2025). Healthcare providers should adopt a holistic approach, routinely screening caregivers for distress and integrating mental health support into the patient’s clinical care plan (Datak et al., 2025;  Kanemura 2026)

Conclusion

 In conclusion, epilepsy should be understood as a condition that extends beyond the individual to affect the psychological and emotional well-being of caregivers, who often carry a significant yet overlooked burden. The constant vigilance, emotional strain, and social and financial challenges associated with caregiving highlight the urgent need to recognise caregivers as essential participants in the care process rather than secondary figures. Addressing their mental health is crucial not only for their own well-being but also for improving patient outcomes, given the interdependent nature of their relationship with the person living with epilepsy. Therefore, healthcare systems, policymakers, and communities must take active steps to provide caregivers with adequate support through psychoeducation, accessible mental health services, and the reduction of stigma, while caregivers themselves should be encouraged to seek support and prioritise their own well-being as a necessary part of effective and sustainable care. 

References:

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Ernest, E., Fakih, Z., Urio, O., & Kisenge, R. (2025). Depression, anxiety and associated factors among caregivers of children and adolescents with epilepsy attending Muhimbili paediatric neurology clinic: A cross-sectional study. BMJ Open, 15, e098286.

Epilepsy Society. (2024, January). Carers. https://epilepsysociety.org.uk/about-epilepsy/information-carers/caring-someone-epilepsy

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