Novel Cleveland Clinic project is fueled by a $1 million NIH grant
Epilepsy and dementia often overlap in later life, yet few programs exist to support older individuals facing both conditions. A new Cleveland Clinic pilot project aims to fill that gap.
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The Healthy Aging in People with Epilepsy Program, or HAP-E, will address key issues and concerns for older adults living with epilepsy — including dementia risk, lifestyle changes and strategies for managing cognitive impairment — says Anny Reyes, PhD, a neuropsychologist in Cleveland Clinic’s Epilepsy Center. The project is supported by a $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.
The relationship between epilepsy and dementia appears to be bidirectional, Dr. Reyes notes. People with epilepsy have a threefold to fourfold elevated risk of developing Alzheimer’s disease later in life. Moreover, emerging research shows that having Alzheimer’s disease or other forms of age-related dementia is associated with an increased risk of seizures.
However, the link between the two conditions is still poorly understood. “It’s a relatively new field and definitely something that we need to study more,” Dr. Reyes says.
As an early-career investigator, she has already contributed several publications to the field, including recent studies in Annals of Neurology (2025;98[3]:533-546), Epilepsia Open (2024;9[4]:1526-1537) and Frontiers in Neurology (2023;14:1230368). The new pilot project aims to translate some of the insights emerging from research into clinical care.
That would begin to address a largely unmet need. Whereas excellent support programs exist for both dementia and epilepsy patients, there are few resources for people managing the two conditions simultaneously. This is despite the existence of nearly 1 million older Americans with active epilepsy and more than 5.8 million with dementia.
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“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 says.
The new program will involve weekly small-group education and discussion sessions covering key topics related to aging, epilepsy and dementia. Examples include early warning signs to watch out for, lifestyle risk factors, seizure management and strategies for navigating cognitive changes.
As part of the pilot project, the Cleveland Clinic team is gathering information and feedback from patients, caregivers and stakeholders about their needs and concerns, with plans to launch the group sessions in the fall of 2026.
The team will also track outcomes, with a goal of measuring patient satisfaction and whether the program increases dementia knowledge and improves patient quality of life.
Dr. Reyes hopes to serve around 80 participants over two years for the pilot project. “My goal is to eventually have HAP-E be part of the national Managing Epilepsy Well Network and make it accessible to other epilepsy centers or clinics so they can provide a group like this to patients as part of their services,” she adds.
Beyond patient education, Dr. Reyes hopes to highlight the need for more research to explore the link between epilepsy and Alzheimer’s disease.
Patients with a history of seizures are typically excluded from clinical trials of Alzheimer’s disease therapies, she notes. The resulting lack of data means many providers avoid giving amyloid-targeting drugs to potential candidates for these Alzheimer’s therapies who also have epilepsy.
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From the standpoint of epilepsy research, most studies have been done in pediatric populations or in young to middle-aged adults. This leaves gaps in knowledge about how to manage epilepsy in older adults, treatment safety profiles in this population and whether certain therapies might affect 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.”
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