What is it really like to experience dementia – or to care for someone with the disease? Maria Jastrzebska is hoping the new play she has written will go some way to explaining the impact on sufferers, carers and families. Dementia Diaries has just finished the first run of performances at the Nuffield Theatre, Southampton, and is now heading to London as part of its tour around the country, playing to audiences of medical professionals, carers and the general public.
"I wanted to find a metaphor for the way this illness affects not only the sufferers but also those around them. So I came up with the idea of inter-woven monologues," says Jastrzebska. "There are five characters in the play: Tata and Mama, who both have dementia; their son, Edzio; their unnamed daughter; and Mrs Alicja, their Polish carer.
"I wrote monologues for each of them – so they all speak to the audience, but never to one another. This represents the way family members can sometimes speak without listening when a situation like this happens." Jastrzebska also wants this device to show what it is like for carers too. "Families come under immense strain when a loved one has dementia," she says. "And agreeing what to do, getting help, can sometimes be very difficult."
Dementia is on the increase. According to Alzheimer's Research UK, in 2005, nearly 700,000 people in the UK had dementia. By 2015 this number will have almost trebled. The disease, which is caused by the gradual death of brain cells, leads to the loss of memory, understanding, judgment, language and thinking.
When the lights come on, we see this clearly in the play with Mama and Tata. There is a particularly affecting moment when Tata, played by Tim Barlow, suddenly stalls. He can't find the word he is looking for. Until this point, he has been very fluent, if at times a little forgetful, but suddenly his helplessness becomes glaringly apparent. It is Tata's wife Mama, played by Anna Korwin, who steals the show though. "My daughter came to visit today," she says. "She's a nice girl, a good girl, it's such a pity she's a prostitute." It brings the house down.
In a questions and answers session after the performance, the subject of laughter provokes heated discussion. Is dementia a subject we should be laughing at, asks a concerned member of the audience. Of course there should be laughter, says a health worker. Jastrzebska explains that she wants us to laugh with the characters, not at them. Life goes on. It does not go into an eclipse because of dementia – there is still light and shade. Director Mark Hewitt then asks how many members of the audience have a direct connection with dementia. Eighty per cent put up their hands.
You get the sense that, for them, seeing on stage what they are having to deal with on a daily basis comes as a welcome relief. It is as if, suddenly, a space has been cleared for an issue that doesn't get enough attention, that beneath the lights, people are seeing a sympathetic but uncompromising representation of their own lives.
Hewitt explains that the play has been put on with help from medical charities. "I saw some of it in an earlier form, as prose poems Maria brought to a workshop in Lewes," he says. "I suggested that she had the makings of a play here and a short while later she went to Slovenia and came back with the script. We then approached the Wellcome Trust, a charity dedicated to improvements in health."
The cast have also been working with the Memory Assessment and Research Centre (MARC), based at Moorgreen Hospital in Southampton and a leading centres in Europe for dementia research, which has helped to make the depiction of the condition more realistic. "They've advised us on aspects of the play, such as how characters should speak and move," says Hewitt.
When a social worker tells me in a bar after the play that Edzio, with his constant letters of complaint, phone calls and harangues, is a character they know only too well, it is clear Jastrzebska has hit a nerve.
• Dementia Diaries is on tour throughout 2011. See www.leweslivelit.co.uk for details.
