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

Malta Independent - - NEWS -

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

The play Il-Masġar tal-Al­lat Siekta is in­spired by Prof. Scerri’s years of ex­pe­ri­ence meet­ing and lis­ten­ing to dementia pa­tients and their care­givers

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