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Recognising the signs of epilepsy

Considering a significant proportion of people with epilepsy develop the condition when they are over 65, aged care workers should be equipped to detect the signs, writes Dr Loretta Piccenna.

Epilepsy is a common neurological condition that occurs at any age, however, the biggest group affected is people aged 65 or older.

The occurrence of epilepsy rises after the age of 60 due to other existing conditions experienced by this age group including cerebrovascular diseases (for example stroke), high blood pressure, diabetes and dementia. About half of all cases have an unknown cause.

Epilepsy presents in older people as being confused or dazed, strange behaviours like fiddling with clothes, feelings of déjà vu, having an unpleasant smell or taste, or involuntary movement or stiffening of a limb. They can either be alert, slightly alert or not alert at all throughout the seizure.

In older people, there is a high risk of a seizure reoccurring after experiencing a seizure for the first time when not resulting from an immediate recognisable event or stimulus (an unprovoked seizure), especially if the seizure goes untreated.

Recent research from the US has shown that the incidence of epilepsy in nursing home residents aged 60 or over is seven times greater that of people the same age living within their own community. This may be because symptoms of seizures experienced by people in their later years can be quite subtle, such as a blank stare or a ‘funny turn’.

It is important that aged care workers and carers, families and friends have the appropriate knowledge and skills to recognise potential seizure signs and behavioural changes that may indicate the need for an epilepsy assessment, as often these signs and behaviour changes are missed or misdiagnosed.

It is also vital that people affected by epilepsy in their later years know how to correctly manage their condition and have trained support available.

Epilepsy and ageing

Research evidence has highlighted that older people with newly diagnosed epilepsy are a vulnerable group who are poorly studied.

Epilepsy is often not considered during a GP assessment, or is undiagnosed or even frequently misdiagnosed when a person presents with changes in behaviour and subtle symptoms. As a result, referral to an epilepsy specialist for an epilepsy assessment does not occur. This may be due to several reasons, one of which is a lack of information on how to recognise the condition and what is the best approach for management.

Community service organisations and aged care providers wanted to explore what was known about epilepsy in older people in the community and what knowledge and care gaps existed that needed to be filled. As a result, the ‘Tackling Epilepsy in the Later Years’ research project was undertaken between the Epilepsy Foundation, the Council on the Ageing (COTA) Victoria, the Brotherhood of St Laurence and the National Ageing Research Institute to address this issue.

Two surveys were conducted with older people in the community and staff at aged care facilities across Victoria. There were 100 people with epilepsy and 472 older people without epilepsy who responded to the survey. People without epilepsy did not answer very many questions correctly indicating a poor level of knowledge. People with epilepsy answered more questions correctly than people without epilepsy, however they still had a poor level of knowledge.

The workforce survey involving 85 staff members highlighted that most staff had poor levels of knowledge about epilepsy. Personal care attendants, who make up a large proportion of staff in the aged care sector, had the poorest levels of knowledge. This lack of knowledge can have dangerous implications for timely treatment and management of epilepsy among older people.

Our research shows how vital it is for staff who provide support to older people to:

  • understand what epilepsy is and how it can present; its impacts on health and daily living, and the importance of maintaining control of the condition
  • understand and practice safety and risk management
  • have specialised training in understanding an individual’s epilepsy management plan and emergency medication management plan (if they have one) and know how to administer emergency medication and seizure first aid.

A set of resources, including a resource manual, information sheets and checklist, has been developed for the aged care sector to guide good practice. These resources are available from the Epilepsy Foundation website.

Dr Loretta Piccenna was the lead researcher on the ‘Tackling Epilepsy in the Later Years’ project. The project was funded by J.O. & J.R. Wicking Trust, the Helen Macpherson Smith Trust and the Aged Persons Welfare Foundation.

An extended version of this article appears in the Spring edition of Community Care Review magazine.

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