Quality of Life for Older People With Epilepsy

Epilepsy affects quality of life (QoL) across the lifespan and its effects are different for everyone. The factors affecting QoL in people with epilepsy, as well as individual perspectives, change with age. The most common etiologies of epilepsy, as well as factors affecting QoL, differ for older adults compared with other age groups. Primary factors affecting QoL include severity of epilepsy and underlying etiologies, treatment and treatment-related side effects, and other medical comorbidities. Additional factors that impact QoL for all people can have unique effects on people with epilepsy, affecting living environment, social engagement, and local and personal resources. These factors combine with the natural aging process to influence QoL later in life, resulting in a range of complex individual experiences and perspectives. This review covers important aspects of QoL in older adults with epilepsy for practicing clinicians.

Timely Diagnosis and Seizure Recognition

Having undiagnosed epilepsy at any age is associated with a substantial negative effect on QoL, with untreated seizures being associated with increased risk of cognitive impairment, increased risk of physical injuries including motor vehicle collisions, and increased risk of death.^1-7 People tend to accumulate medical comorbidities with age and the effects of seizures can be substantial in older individuals with preexisting medical conditions. Epilepsy incidence is also highest among older individuals. More than one third of cases of active epilepsy are in people age >65 years, with the most common types of seizures in older adults being focal seizures, which often have subtle and difficult-to-recognize symptoms.^8,9 In particular, focal nonmotor seizures, which represent the majority of focal seizures, often go unrecognized by individuals, caregivers, and doctors, leading to delayed diagnosis and inadequate treatment even for people who have been diagnosed.^10-12 The treatment gap for older adults is likely disproportionately high for this reason. Without treatment, more subtle seizure types generally give rise to bilateral tonic-clonic convulsions, and increased risk of seizure-related morbidity and mortality over time. Recognition and treatment of epilepsy, particularly subtle seizure types even in individuals with a preexisting diagnosis, are important for reducing the negative effect of seizures on QoL, as seizure burden alone tends to have the largest effect on QoL measures in adults with epilepsy.

Although bilateral tonic-clonic seizures are relatively easy for individuals, caregivers, and doctors to recognize, more subtle seizure types are more difficult to recognize and track over time. For clinicians, asking the right screening questions to individuals and caregivers is an important component of providing care, as is educating individuals and caregivers about the signs and symptoms to monitor for seizure tracking. Common questions used for seizure screening and their approximate diagnostic accuracy are summarized in the Table.^13,14

Appropriate questions for seizure screening may vary by language, culture, and region and should be tailored by clinicians accordingly.¹⁵ A detailed interview with individuals and, when available, caregivers and family is crucial for providing quality clinical care and ensuring prompt diagnosis and treatment of seizures. Effectively tracking seizures over time is also a challenge, even in clinical trial settings,¹⁶ but improving standardized documentation of seizure frequency in clinical care is important, and simple methods have been shown to be effective.¹⁷ Cell phone video recording has been found to be an effective means to identify seizures when EEG is not available or feasible, although more subtle seizure types are difficult to assess through a video and require a detailed clinical history to identify.¹⁵

Recognition and effective treatment of seizures are a cornerstone for optimizing QoL, but it is also imperative to take whole health into consideration when managing epilepsy in older adults. Additional considerations and strategies in terms of addressing the whole health of an individual are discussed in further detail in the following sections.

Factors Related to Quality of Life in Older Adults With Epilepsy

An important aspect of taking whole health into consideration when managing epilepsy in older adults is recognizing and measuring aspects of care that affect QoL more broadly than the direct effects of seizures. Seizures are indirectly associated with negative consequences on cognition, emotional well-being, and social functioning.¹⁸ In the acute setting, seizures impair cognition, including in the postictal period. In the long term, recurrent seizures can have lasting sequelae, further compounded by diagnostic delay and medication side effects, as well as age-related cognitive decline (Figure).¹⁹ There is also overlap between dementia and epilepsy, with dementia being associated with an increased risk of epilepsy, and epilepsy being associated with an increased risk of dementia.²⁰ Being aware of this risk is key, and obtaining neuropsychological testing in people with epilepsy as they age can be a helpful tool in monitoring for and diagnosing comorbid cognitive disorders.

Besides having direct effects on individuals, epilepsy has socioeconomic repercussions. Epilepsy is associated with more frequent work absences, poor productivity at work, and early retirement in older adults. Because of inadequate screening and documentation of challenges related to learning and cognitive issues in adults in clinical settings, the full extent of the effects of epilepsy on issues related to achievement at work is understudied.²¹ Learning and cognitive difficulties can have substantial financial ramifications for the individual in the short term as well as complicating long-term care planning and increasing costs related to the burden of epilepsy on a community level. These issues can be complex, and the effects vary among individuals depending on age, individual resources, family and community support, and societal resources.

For many people, connecting with a social worker and local foundations can be an effective way to help overcome some of these challenges and improve QoL, social functioning, and community engagement. Psychiatric comorbidities, which are generally poorly recognized and treated and pose a substantial burden among older adults with epilepsy, are an important aspect of managing care in people with epilepsy at all ages.²² Psychiatric comorbidities can influence cognitive function with age and can both affect and be affected by sleep quality, leading to many of these comorbidities being interrelated. There is evidence of an overlap between cognitive function and depression, and in some cases, antidepressants can improve cognitive function independently of their effects on depression.²³

Screening for psychiatric comorbidities should be a routine part of caring for people with epilepsy, particularly for the issues that increasingly overlap with age such as mood, sleep, and cognitive issues. One of the reasons to address these issues at the same time in routine clinical care is that they can have shared treatment approaches, and addressing some comorbidities can make treatments more successful for others. For instance, for people with sleep apnea, effective treatment can lead to reduced chronic sleep deprivation, improved seizure control, improved cognitive function, and improved daytime energy levels: all key components of overall QoL.

Improving Quality of Life in Older Adults With Epilepsy

Focusing on all aspects of health and well-being when treating older adults with epilepsy is important for improving QoL, which often requires a multidisciplinary approach with care coordination between specialists and primary care providers. Treatment of epilepsy in older adults must balance seizure control with medication side effects and the potential effects of both on medical comorbidities and risks associated with polypharmacy. It is important to review medications at each clinic visit and work on simplifying medication regimens when possible. Optimizing antiseizure medications with potentially beneficial side effects, such as improving mood, cognition, and sleep, can also be a helpful strategy in improving QoL. Higher doses of ASMs and increasing number of overall medications have been associated with worsening cognitive function, although this is a complex issue because of the contributory effects of seizure refractoriness and underlying etiologies. However, side effects such as cognitive impairment secondary to antiseizure medications are reversible, so it is critical to determine whether negative symptoms affecting QoL are related to medication side effects or other underlying disease states. There is considerable individual variation in response to treatment and the experience of treatment-related side effects, so there is a need for monitoring cognitive side effects as well as the effects of seizures on cognition over time. One way to monitor this clinically is to obtain neuropsychological testing, which can help identify cognitive change over time and point to potential etiologies. Overall, the relationship between medications and QoL can be complex and needs to be considered in the context of an individual’s baseline functioning and a full range of potential contributing factors.

Another consideration when addressing QoL in older people with epilepsy is physical fitness. Supporting active lifestyles is a practical and holistic approach to helping optimize QoL in people with epilepsy as they age. Although a recent study did not find a strong association between physical activity and subjective measures of QoL, physical activity was found to improve cognitive function in adults with epilepsy.²⁴ Improving cognition and mood can support improvements in QoL, and increased physical activity for people with epilepsy can achieve improved cognition and mood. Involving physical and occupational therapists when indicated can be beneficial as well as encouraging increased physical activity during routine clinic visits. From a clinician’s perspective, supporting an active lifestyle can take on many forms beyond making referrals to other health care providers. Connecting people and their families with local community organizations can be an effective way to improve QoL, increase physical activity, and increase social engagement as people age.

Clinical care for people with epilepsy as they age must consider individual and subjective perspectives and goals, which can change over time. These perspectives and goals should be an ongoing dialogue between clinicians and individuals across the lifespan. Screening questions for QoL are not always one-size-fits-all, and individualizing approaches and discussions is often necessary. There have been advances in tools to screen for QoL over the years, with the most frequently used and well-validated screening tool for clinical research in epilepsy being the 31-item Quality of Life in Epilepsy Inventory (QoLIE-31). The QoLIE-31 contains 7 scales encompassing multiple assessments evaluating individuals’ subjective emotional well-being, social functioning, energy level, cognitive functioning, worry about seizures, medication effects, and general QoL perspective. By and large, seizure frequency has the greatest effect on QoL scores, but there are complex overlying effects of the aforementioned factors that make quantifying QoL an ongoing challenge.²⁵ In addition, screening tools are designed for use in clinical trial environments and not for the routine clinical care of people with epilepsy, where the focus should be on forming a positive patient–provider relationship and forming treatment plans based on a deeper understanding of individuals and their personal goals and perspectives.

Conclusion

Over the years, there has been a positive and increasing focus on whole health and QoL in epilepsy care. There are unique considerations for the aging population with epilepsy, among whom there is a higher prevalence of comorbid cognitive disorders, vascular disease, and other age-associated health conditions. For some people with epilepsy, cognitive comorbidities have an even larger negative effect on QoL than seizures, but individual goals and perspectives are variable and often change over time. Not all epilepsy treatment approaches improve QoL, and the interaction of underlying epilepsy etiology, preexisting and comorbid conditions, and medications can be complex, requiring tailored approaches and long-term collaboration between individuals and their health care providers.