A pilot: Co-designing resources to improve the ability of seniors with epilepsy to access and be included in the community
Epilepsy Queensland is proud to have received a grant from the Brisbane City Council – Access and Inclusion Program 2018-2019, to address access and inclusion barriers for elderly people with epilepsy.
Recognizing that old age is one of the most common times to acquire epilepsy, Epilepsy Queensland is running a project to develop age-appropriate, factual, engaging and informative resources about epilepsy within the ageing population. The overarching goal is to identify and break down barriers (perceived or real) of older people living with epilepsy to access and be included in what the community has to offer.
Epilepsy is not always the first possibility that comes to mind when an older adult has a seizure. Its clinical presentation can resemble other conditions common in the older population, such as stroke, head injury, brain tumours, cardiovascular disease, chronic alcoholism, Alzheimer’s disease, or dementia.
Ageing in itself can be challenging and sometimes isolating but older people with epilepsy have an added complication and this can have a profound impact on a person’s independence and capacity for economic and social inclusion.
The barriers (which this project aims to identify and overcome or minimise), may range from the person’s emotional and attitudinal state, their problem solving and coping mechanisms, to the strength and breadth of their family and support network and further, extending to the knowledge, empathy and understanding of clinical and community services staff and even further into workplaces and the general public.
A few of the barriers identified to date include:
- A lack of understanding and empathy that people with epilepsy can lead a normal life
- Misconceptions about what people (with epilepsy) can or can’t do at work
- A lack of understanding about what support services are available
- A need to overcome challenges to enable a person to engage in ‘normal’ activities such as swimming and travel
- A lack of knowledge of what to do when someone is having a seizure
Through this project, information will be gathered from people over the age of 55 years with epilepsy and/or their families/carers. Their experiences commencing from initial symptoms through to diagnosis, treatment and management of epilepsy will form the foundations of the project. The aim is to understand what the barriers are to accessing and being included in, the community. Once the barriers are identified and understood, then the project’s aim is to identify ways to break those barriers down.
We are thankful to those people who were able to join us on 4th April for a workshop to explore the topic. This was a very productive morning, with participants able to connect with each other and share their stories in a welcoming and supportive environment.
We are currently seeking input from two different groups within the Greater Brisbane Region:
A: People over the age of 55 years with a diagnosis of epilepsy and/or their families/carers;
B: Any person/s who work in the clinical or community service sector who have supported older people with epilepsy and are able to share their experiences, information and ideas.
Options available for providing your information is via a paper survey, an online survey or phone call with the Project Facilitator, Janet Pond.
For more information, please contact Janet Pond, Project Facilitator, on 0410 596 133.