Paint the world purple: the need for focus on epilepsy and older people.

Today is World Purple Day. It is also known as Epilepsy Awareness Day and is celebrated annually on March 26th. In 2008, eight-year-old Cassidy Megan from Canada decided she wanted to help raise awareness for people with epilepsy and to make sure no one affected feels alone. She named her idea after the colour of lavender, the internationally recognised flower for epilepsy, and Purple Day was born! Sadly, only Canada officially recognises the day yet it is growing in popularity across the world. See https://www.purpleday.org/

The purpose of the day is to raise awareness about the brain disorder that is epilepsy. Epilepsy is defined as the tendency to have repeated seizures which start in the brain. It is also an opportunity to increase understanding of the disease and to eliminate the fear and stigma which is often still around it.

In Scotland according to the national body Epilepsy Scotland, children and older people are most at risk of developing this common serious neurological condition but anyone can develop epilepsy at any time, and eight people a day in Scotland do. These are huge numbers and yet I suspect many folks are not aware of this. Indeed approximately 55,000 people in Scotland are living with epilepsy, making it one of the most common chronic neurological disorders. It is therefore more common than people in Scotland who are living with Multiple Sclerosis, Parkinson’s, Cerebral Palsy and HIV combined.

Epilepsy Scotland do a great deal of work not least in campaigning for increased clinical and community support, increased training and expertise and critically the improvement of data collection, so we get a better picture of the extent of epilepsy and its impact in modern day Scotland.

I share a belief together with many in the field that more needs to be done to better support and make others aware of the impacts and extent of epilepsy in older people. I remember the first time I worked in a health and care environment and someone living with epilepsy had a ‘seizure’  – the alarm, uncertainty, and anxiety of those around was deeply regrettable including from myself. I am not convinced a few decades on that we have moved much more forward to an informed and inclusive approach.

Epilepsy Scotland have a hugely helpful website with fact sheets which can answer some very basic questions. Some points to note (amongst many) include:

  • No two people experience epilepsy in exactly the same way. For one person, epilepsy can mean complete seizure control on medication. For another, it can mean uncontrolled and frequent seizures despite medication.
  • A diagnosis of epilepsy can have life-changing consequences. These can include the loss of a driving licence, reduced independence, and disruption to employment. It can also affect someone’s education and employment prospects, and lead to an increased degree of social isolation and depression.
  • A seizure is a sign of temporary disruption to the brain’s electrical activity. If there is excessive electrical activity in the brain it can cause a seizure.
  • There are around 60 different types of seizures and epilepsy syndromes, and a person can experience more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.
  • Seizures are generally divided into two main types, focal seizures and generalised seizures.
  • As many as one in 20 people will have a one-off seizure in their life. However, this does not mean they have epilepsy.

There is a growing volume of research which argues that there is need for a particular focus both in policy, practice, education, and research on the impacts of epilepsy in older age.  One of the most significant pieces of research is that published by Prof A Sen in the Lancet in 2020 Epilepsy and the elderly Lancet revised final.pdf (ucl.ac.uk). It clearly states that as more and more individuals are living longer and into older life the occurrence of epilepsy in the older population is likely to increase. This they rightly argue requires substantial work around the impacts of particular pharma interventions on this population and argue that more work needs to be done on the range of cognitive, psychological and psychosocial comorbidities as well as the impact that epilepsy may have on an older person’s broader social/care network. I would add that there is considerable work needed to be undertaken on the specific inter-relationships with dementia and delirium especially amongst older women.

The lack of robust, national and strategic research on epilepsy ij the older population is yet another illustration of the extent to which on the one hand epilepsy research is under-funded and on the other the lack of priority given to health impacts on older people in general, a latter point I have frequently made in this blog.

We need to get better at supporting older people to live with epilepsy whether it is a condition developed during older age or into older age. That involves those with a particular focus on older people’s care and support becoming much more aware, better informed and more skilled at caring for, supporting and enabling people with epilepsy whether in homecare or care home environments. I strongly believe there needs to be a national dedicated resource and effort made to address the experience of so many older Scots living with epilepsy, and to reduce some of the concerns and alarm, lack of knowledge and stigma which can result in inappropriate behaviour, language, practice and response.

Today as World Purple Day should be used as an opportunity not only to raise awareness but to ensure that action results in order to reduce yet another area of health inequality for older Scots.

As regular readers know I often finish a blog with a poem and it would simply be too easy to repeat my often used Jenny Joseph classic ‘When I am an old woman I am going to wear purple.’ But there is a similar poem which celebrates the passion and unpredictability of older age by the irrepressible Dorothy Parker which I leave you with. It like the choice of lavender by young Cassidy Megan is about turning the tables of expectation, challenging stigma and limitation, and about recognising that life continues until it ends. We owe it to those young and old who live with epilepsy to try to create a country where we don’t just wear purple for a day but change the way we support one another to live our lives to the fullest possible extent.

The Little Old Lady in Lavender Silk

by Dorothy Parker

I was seventy-seven, come August,

I shall shortly be losing my bloom;

I’ve experienced zephyr and raw gust

And (symbolical) flood and simoom.

 

When you come to this time of abatement,

To this passing from Summer to Fall,

It is manners to issue a statement

As to what you got out of it all.

 

So I’ll say, though reflection unnerves me

And pronouncements I dodge as I can,

That I think (if my memory serves me)

There was nothing more fun than a man!

 

In my youth, when the crescent was too wan

To embarrass with beams from above,

By the aid of some local Don Juan

I fell into the habit of love.

 

And I learned how to kiss and be merry- an

Education left better unsung.

 

My neglect of the waters Pierian

Was a scandal, when Grandma was young.

 

Though the shabby unbalanced the splendid,

And the bitter outmeasured the sweet,

I should certainly do as I then did,

Were I given the chance to repeat.

 

For contrition is hollow and wraithful,

And regret is no part of my plan,

And I think (if my memory’s faithful)

There was nothing more fun than a man!

 

From The Little Old Lady In Lavender Silk by Dorothy Parker – Famous poems, famous poets. – All Poetry

 

Donald Macaskill