Shining the spotlight on the true heroes fighting the silent diseases
Is a dedicated voice in the world of neurodegenerative diseases, especially in the field of dementia. After spending years lobbying for attention, raising the voice of patients and their carers, and raising awareness among the public, he has now ventured
Can you share the idea behind the play?
The play’s inspiration came from my years of listening to patients with dementia and their caregivers. Let’s bear in mind that dementia is an umbrella term that groups a number of brain diseases characterised by progressive brain matter loss, Alzheimer’s disease being the most common one. The majority of diseases that lead to dementia don’t have an established onset, even though we have a clue of what the risk factors might be. It could be months and years before patients or their family members realise something is amiss. In fact, part of the reason why I named the play IL-Masġar Tal-Allat Siekta (The grove of the silent gods) is to highlight the stealthy nature of Alzheimer’s disease in particular.
My foray into writing this play is a continuation of my ambition to exploit any and all available avenues for raising awareness. And the storyline is an assemblage of my experiences with both the patients and their caregivers.
How is this play different to any other?
This is the first play in Malta to deal specifically with the theme of dementia. As far as I know, dementia-specific plays have only ever been held in a few countries worldwide including the United Kingdom, Israel, and Cyprus.
Written and presented entirely in Maltese, IlMasġar tal-Allat Siekta features three actors – a father, a mother, and a son – and deals with the aftermath of a dementia diagnosis. It is directed by acclaimed actor Joseph Galea and the three actors are Joe Pace, Justin Sean Grech, and Rita Camilleri. The play is 50 minutes long.
In another first for Malta, a 30-minute audience interaction will follow the show making it a truly interactive experience and one-of-its-kind.
I am incredibly proud to have found great partners to make this happen. Science in the City was instrumental in making the theatre space available free of charge, while HSBC UK Contact Centre Swatar made a tremendous financial contribution. The Malta Dementia Society was also involved. The idea is that following the first performance, we take the play to various localities in Malta and Gozo in order to continue raising awareness. I just hope that we will find the financial backing to do this. Just imagine how many people we could reach and what a great impact on awareness that could have.
Why have you declared a ‘state of emergency’ on dementia?
It’s the numbers. Currently, in Malta, approximately 1.5 per cent of the population has dementia – that’s over 6,000 people – but with the rise in life expectancy, this number is expected to go up to 3.3 per cent, so around 13,000 people by 2050.
Conditions like Alzheimer’s disease and other common forms of dementia can be referred to as family diseases, because of the way they affect the patient and family members. For every person with dementia there are at least two to three other individuals that are directly affected by it. Realistically, we are not looking at 13,000 people, but nearly 30,000 Maltese by 2050. That’s more than the current population of Gozo.
Alzheimer’s disease is the most important neurodegenerative disease of old age. Age is the most important risk factor in getting dementia, and as people get older the incidence and prevalence rates increase. At present, 1-2 per cent of all people aged 65, 25 per cent of people aged 80, and 45 per cent or more of people aged 90 and above, have dementia.
Is there enough research being done to figure out dementia?
Unfortunately, the most important dementia-related illnesses cannot be cured, so supporting these individuals and those who care for them is central in providing the best quality of life and care. However, if this support – whether formal: nurses and doctors, or informal: family members and caregivers – has to pass through the hoops of stereotypes and negative perceptions that makes it all the more difficult.
I don’t see a cure in the next 10 or even 20 years. One of the reasons for this is that, compared to diseases such as cardiovascular (CVD) disease or cancer, dementia research attracts far less attention and funding. In fact, if you take all the CVDs together and all types of cancers together, their combined expenditure will be less than the amount spent on dementia management and care. But research-wise, cancer receives nine times more and CVDs five times more funding than dementia. This is ironic because caring and managing dementia currently costs one per cent of the world GDP (US $880 billion). In fact, by 2018, the costs will increase to about $1 trillion.
All we can do is increase our support and understanding to carers and the patients. Some parts of this play tackle this issue: lack of care, lack of awareness, existence of stigmas.
What is the Maltese government doing to address dementia?
Quite a bit I have to say. Malta is one of only 21 countries in the world to have a holistic National Strategy for Dementia. We are in fact the only country in the world at the moment to have a version of the strategy document which is dementiafriendly. A number of services have also been launched in recent years with the aim of supporting these individuals and those who care for them. Unfortunately, dementia is unique in the sense that patients lose their ability to communicate as the dementia progresses. This means that people like us have become the voice of the voiceless.
CineXjenza – Cinema meets Science (on Alzheimer’s) – Still Alice (film) on Friday 30th September at 9pm at Cinema Room, St James Cavalier. Prof. Charles Scerri will be part of the postscreening discussion at 10.45pm. Attendance is free.
European Researchers’ Night, Science in the City - is organised by a consortium led by the University of Malta, the Malta Chamber of Scientists, the University’s Research Trust (RIDT) together with a number of partners. It is mainly funded by the European Commission’s Research and Innovation Framework Programme Horizon 2020 (H2020, 2014–2020) by the Marie Skłodowska-Curie actions and recognised as a Festival by Europe for Festivals and Festivals for Europe (EFFE).www.scienceinthecity.org.mt