Facing both epilepsy and dementia in later life? It's a challenging reality for many older adults, yet dedicated support programs are surprisingly scarce. But a new initiative at the Cleveland Clinic is stepping up to address this critical gap.
This pilot project, known as the Healthy Aging in People with Epilepsy Program (HAP-E), is designed to tackle the unique needs of older individuals navigating both conditions. Led by neuropsychologist Dr. Anny Reyes, the program is backed by a substantial $1 million career development award from the National Institutes of Neurological Disorders and Stroke.
"The goal is to empower patients with information and skills to improve self-management and quality of life," Dr. Reyes explains. This program aims to provide older adults with the tools and knowledge they need to manage their health effectively.
The Complex Link:
The relationship between epilepsy and dementia is a fascinating, yet complex, area of study. Dr. Reyes points out that the connection appears to be bidirectional. People with epilepsy face a threefold to fourfold increased risk of developing Alzheimer’s disease. Simultaneously, emerging research indicates that those with Alzheimer's or other age-related dementias may experience an increased risk of seizures.
However, the exact nature of this link remains somewhat mysterious. "It’s a relatively new field and definitely something that we need to study more," Dr. Reyes admits. Her own contributions to the field, including publications in prestigious journals like Annals of Neurology, Epilepsia Open, and Frontiers in Neurology, are helping to shed light on this intricate relationship.
A Critical Need:
While support programs exist for both dementia and epilepsy, resources are limited for those managing both conditions simultaneously. Consider this: there are nearly 1 million older Americans with active epilepsy and over 5.8 million grappling with dementia.
"We need to provide patients and their caregivers with some real tools to address not only the epilepsy itself but also any coexisting dementia or cognitive impairment," Dr. Reyes emphasizes.
What the Program Offers:
The HAP-E program will feature weekly small-group education and discussion sessions. These sessions will cover essential topics related to aging, epilepsy, and dementia. Participants can expect to learn about early warning signs, lifestyle risk factors, seizure management, and strategies for coping with cognitive changes.
The Cleveland Clinic team is actively gathering feedback from patients, caregivers, and other stakeholders to tailor the program to their specific needs. The group sessions are scheduled to launch in the fall of 2026. The team will also track outcomes, measuring patient satisfaction, and assessing whether the program enhances dementia knowledge and improves quality of life. Dr. Reyes aims to serve around 80 participants over two years during the pilot project.
Looking Ahead:
Dr. Reyes envisions the HAP-E program becoming part of the national Managing Epilepsy Well Network, making it accessible to other epilepsy centers and clinics. This would allow more patients to benefit from this much-needed support.
The Need for More Research:
Beyond patient education, Dr. Reyes is keen to highlight the need for further research into the connection between epilepsy and Alzheimer’s disease. Here's where it gets controversial... Patients with a history of seizures are often excluded from clinical trials of Alzheimer’s therapies. This lack of data can lead to hesitation among providers when considering amyloid-targeting drugs for potential candidates with both conditions.
Furthermore, most epilepsy studies have focused on pediatric populations or younger adults, leaving gaps in our understanding of how to manage epilepsy in older adults. This includes treatment safety profiles and the potential impact of certain therapies on dementia risk.
"What we know for sure is that as our geriatric population continues to grow, the number of older adults with epilepsy and cognitive decline is also going to increase," Dr. Reyes concludes. "We hope this project can help us better meet the needs of this population."
And this is the part most people miss... The importance of tailored support for older adults with both epilepsy and dementia cannot be overstated. This program represents a significant step forward.
What are your thoughts? Do you know someone affected by both epilepsy and dementia? What kind of support do you think is most needed? Share your thoughts in the comments below!
