Curving Cognitive Decline in Epilepsy: Introducing Cleveland Clinic’s New HAP-E Pilot Program

As the global population ages, epilepsy is becoming one of the most common, and most overlooked, neurological conditions of later life: people with epilepsy face nearly triple the risk of developing dementia, dementia patients face a five to tenfold increased risk of developing epilepsy, and older adults now account for roughly a quarter of all first-time seizures.¹ Despite the prevalence, few centers are dedicated toward the care of patients facing the unique challenges that come with epilepsy in later years of life, including these difficult-to-treat coexisting conditions.

Fueled by a $1 million NIH grant, a new program from Cleveland Clinic aims to address key issues and concerns for older adults living with epilepsy. Otherwise known as the Healthy Aging in People with Epilepsy Program, or HAP-E, this new initiative that equips older adults living at the intersection of epilepsy and cognitive decline with the education, tools, and lifestyle strategies they need to actively manage both conditions at once.²

The program, designed with direct input from both patients and providers through surveys and community engagement studios is currently in its pilot stage as part of a 5-year career development award. Led by Anny Reyes, PhD, a clinical neuropsychologist at the Cleveland Clinic Neurological Institute and Epilepsy Center, the program is designed to catch patients early, before cognitive decline has progressed to full dementia, and will be offered in both virtual and in-person formats to ensure access for patients who can no longer drive because of active seizures.

“A lot of individuals with epilepsy don't drive because they may have active seizures, so we want to make sure that we give a virtual aspect to the program, so that there's access to what we're offering,” Reyes told NeurologyLive. “The main goal is for this to be something that doesn't require a highly specialized epilepsy provider. We hope it can eventually be delivered by trained master's-level clinicians, such as licensed clinical social workers, making it easier for community organizations to offer the program and expand access.”

Programs within the Managing Epilepsy Well Network have historically been developed for younger and middle-aged adults, while self-management tools on the dementia side have been built almost exclusively around AD and other related dementias. Reyes noted that the program excludes patients who have fully transitioned to the dementia stage, and focuses solely on those before disease has progressed.

The program’s content spans several domains beyond seizure management, including medication adherence, cardiovascular risk factor management, physical activity, diet, mood, and cognitive health. When speaking with NeurologyLive, Vineet Punia, MD, one of the leaders of the program, emphasized the importance of what he calls a “triangulation” between epilepsy, cerebrovascular risk, and cognitive decline, and noted things like hearing loss and social isolation as modifiable risk factors that the program aims to address. Overall, the program is intended to embody a primary care mindset rather than a narrow specialist one.

“The adherence can be an issue, either because of some mild cognitive impairment, or compared to other medications the patients are used to taking, like antihypertensives, where even if you miss a dose or two you don't see any immediate effect. But with antiseizure medication, missing a dose or 2 can bring a breakthrough seizure, ER admission, falls, and whatnot, and just complicates the whole picture,” Punia added.

To date, approximately 1 million Americans over the age of 55 have epilepsy, and the prevalence of dementia in these individuals ranges from 8 to 17%. In addition, studies have shown that those older than 65 with AD are up to 10 times more likely to have seizures than those without dementia.^3,4

Cerebrovascular disease accounts for a large portion of new-onset epilepsy cases in the elderly and is considered the single most common cause. In the first year after stroke, the risk of developing epilepsy can increase 20-fold. In 2020, the estimated total healthcare costs associated with Alzheimer disease reached approximately $305 billion and are projected to exceed $1 trillion as the population ages, driven largely by skilled nursing, home health, and hospice care, with additional indirect costs related to caregiver burden likely underestimated.^5,6

The hope is that the newly initiated program will also help spurn improvements in multidisciplinary care coordination, which Punia notes can be a challenge.

“Every field is advancing so rapidly that when people come to my clinic with nuanced epilepsy and I see some white matter disease but no clear stroke history, I'm not sure, should I start aspirin on these patients?” he said. “Managing that multidisciplinary care, looking at risk of MCI and dementia, referring them to a brain health clinic, adding burden to a patient who already has started having seizures and lost independence because of driving privileges, and how to best manage that under one roof, a multidisciplinary program is something that we struggle with.”

Through this program, patients will also begin to empower themselves on better management methods for the long term. There are several parallels with other fields, such as with diabetes care, Reyes notes.

“If we think about the chronic disease model, such as how we conceptualize diabetes, there is a management piece,” she said. “Patients have to monitor their glucose, many of them have to take medications. In conditions like diabetes, self-management, making patients active participants in their health, has been something that has been around for quite some time, and has been shown to be very successful in actually improving outcomes.”

Although the program is still getting off the ground, the plan is to offer both virtual and in-person formats. Typical sessions will run in a group format, roughly 8 to 12 participants per group, over approximately 3 months. The pilot phase, targeted for spring 2027, aims to enroll around 180 participants in a randomized pilot-controlled trial.

For patients who have already progressed to dementia, Reyes and Punia noted that the team envisions a version of the program aimed at their caregivers, helping them implement the relevant lifestyle and management changes on the patient’s behalf, with goals around quality of life improvement and fall prevention rather than slowing disease progression. Eventually, the long-term goal is for the program to be eventually deliverable by licensed social workers and community organizations, not just epilepsy or memory specialists, so it can scale beyond academic medical centers.

To date, there are a handful of resources for aging patients with epilepsy, mainly from the Managing Epilepsy Well Network, a CDC-funded group that has been active since 2007. Since its creation, it has tested 11 self-management programs for adults with epilepsy, including HOBSCOTCH, a home-based self-management and cognitive training program, and MINDSET, a management information and decision support tool. HOBSCOTCH and MINDSET primarily help patients stay on track with medications, manage stress and mental health challenges, and deal with memory problems and stigma.⁷

Reyes added, “We have these kinds of programs in the epilepsy world, which have been more developed for younger middle-aged adults, and then we have these programs in the mild cognitive impairment and dementia world that had been more exclusively developed for Alzheimer disease and related dementias. So, what was missing is something that could target both groups.”

Even as the program takes shape, both Reyes and Punia are clear that the clinical challenge extends well beyond what any single intervention can solve. As Punia sees it, the field needs to fundamentally shift how it thinks about older patients with epilepsy, moving away from a narrow focus on seizure control and toward something closer to a primary care mindset.

"We need to move away from just considering and managing seizures," he said. "We need to be looking at what medications they are on, the fact that social isolation is a risk factor for further cognitive decline, and think of this triangulation between epilepsy, cerebrovascular risk factor, and cognitive decline. I always tell people a healthy brain lives in a healthy body."

Part of that shift means getting more of the medical community on the same page. Reyes noted that while epileptologists tend to readily grasp the seriousness of the dementia connection, the same is not always true on the other side of the aisle.

"We don't have a tough time convincing epileptologists about this bidirectional relationship between dementia and epilepsy," she said. "We tend to have a tougher time with our Alzheimer's disease and related dementias colleagues, for them to really grasp the seriousness of seizures in Alzheimer's disease and just older age."

That awareness gap is precisely what makes efforts like this one matter beyond the clinic walls. Through a growing body of research, cross-disciplinary conferences, and programs designed to meet patients where they are, Reyes, Punia, and their collaborators are pushing to make the epilepsy and dementia conversation one that neither field can afford to have alone.

REFERENCES
1. Sen A, Jette N, Husain M, Sander JW. Epilepsy in older people. Lancet. 2020 Feb 29;395(10225):735-748. doi: 10.1016/S0140-6736(19)33064-8. PMID: 32113502.
2. New Program Tackles Dual Challenge of Epilepsy and Dementia in Older Adults. Cleveland Clinic. January 13, 2026. Accessed June 25, 2026. https://consultqd.clevelandclinic.org/dual-challenge-of-epilepsy-and-dementia-in-older-adults
3. Silent Dementia: Understanding the Link Between Epilepsy and Dementia. Epilepsy Foundation. April 22, 2025. Accessed June 25, 2026. https://efneny.org/2025/04/22/silent-dementia-understanding-the-link-between-epilepsy-and-dementia/
4. Epilepsy and dementia. Forward with Dementia. March 8, 2023. Accessed June 25, 2026. https://forwardwithdementia.au/news/epilepsy-and-dementia/
5. Sen A, Capelli V, Husain M. Cognition and dementia in older patients with epilepsy. Brain. 2018;141(6):1592-1608. doi:10.1093/brain/awy022
6. Alzheimer’s Association Report. 2020 Alzheimer’s disease facts and figures. Alzheimer Dement. 2020;16:391-460. doi:10.1002/alz.1206
7. Managing Epilepsy Well Network. CDC. May 15, 2024. Accessed June 25, 2026. https://www.cdc.gov/epilepsy/mew-network/index.html