How 'Abdullah and Leilah' is a world first in dementia education
This year the UK celebrates the 70th anniversary of the voyage of The SS Empire Windrush. She and others like her have ushered in one of the greatest changes in British society with immigrants from all over the world following in her wake. British life has seen a transformation as we all add to the social, cultural and political milieu.
As health professionals, our aim is to provide personalised and holistic care. It’s true that sometimes we struggle, especially with those who have memory problems and even more so with people whose background is different to our own. Dementia is a group of diseases where actions are often unexplained and one where you can forget the very language you have used for decades. Whilst ultimately a terminal illness, people can live well with dementia for many years aided by prompt diagnosis, treatment, and information. Access has increased hugely since the original Prime Minister’s challenge, first in 2015 and now via a recommitment through to 2020. The challenge aspires to increased awareness and that all have equal access to meaningful care.
We still have a long way to go. We know that the ability to explain certain common non-memory symptoms, such as apathy or ‘aggression’ remains low and that in general ethnic minorities are offered less help and at a later stage. For many, forgetfulness is felt to be a normal part of ageing. The ‘Time to Change’ campaign in 2009 identified a roadmap to reaching the Windrush generation, which included culture-specific media, positive messages about mental health and the use of plays and drama to convey the message.
Four years ago, Ashtar Alkhirsan, the director and BBC alumnus, came to me with an idea. She knew these challenges only too well. She is the daughter of an Iraqi man who came to the UK as a young man and helped add to the British tapestry. He lived his final years with dementia in a British nursing home. He had forgotten English, his daughter’s first language, and found it hard to relate to staff who did not speak his mother tongue. This resulted in sometimes unpredictable behaviour. She wanted a film about him and about the dedicated, if sometimes difficult, care he received. I wanted to assist her, to help her co-write and make it. I wanted to show the difficulties in looking after someone. I wanted to educate difficult to reach groups. We ended up doing much more.
I’m very proud that with the help of Resource Productions, NELFT, The Wellcome Trust and The BFI we produced what we believe to be the world’s first transcultural drama about the effects of dementia, Abdullah and Leilah. Whilst there have several recent dramas about dementia such as Finding Alice none have dealt with the issues I see on a daily basis working in multicultural London. The issues and challenges facing someone with a non-English background. In our brief 20 minutes we were able to show how real the challenge of aggression towards staff is, and we able to celebrate as they got up again to provide the best care. We explored the emotional connections that Abdullah – the protagonist based on Ashtar’s father - could never lose despite the illness. We delved into his actions, actions that without context are often labelled as ‘challenging behaviour’. We wanted to show people doing their best, and to provide information to those who needed it, including health professionals.
We have previewed the film with scientific advice to groups from all over the UK. I think one of the things that struck me the most is how much the story touched people. I’ve been to a number of preview showings now, and even those never touched personally by dementia have had their eyes well up with tears. It’s been the youth of all backgrounds that surprised me the most. It seems they were able to engage and relate most with the film. They felt it answered questions they felt could never be asked for fear of insulting or being disrespectful to their elders. It was shown to Arabic groups where there is no common word for ‘dementia’, where instead the term used is a derogatory term for acting strangely or irrationally, similar to the how ‘mental’ or ‘demented’ is used in English. We were able to speak about the complex changes that led to the behaviours and how the brain itself was affected.
Harjit K Bansal, Equality and Diversity Manager at NELFT said of the film:
When Samir approached me with the script of the film, I was encouraged to do something as the theme for the film seemed relevant in terms of what it was trying to capture, but also because dementia was becoming a common theme in some of the community groups, particularly the BME communities that NELFT serves. As part of the engagement with the community groups, I encouraged Samir and Ashtar to preview the film to staff in NELFT, and encouraged board members to attend. This created a lot of interest to the point that the Director of Finance, with support from Joe Fielder, our trust chair, agreed to sponsor the film.
We are currently previewing the film to all the directorates within NELFT. When our board of directors recently saw the preview, there were a lot of suggestions on how we could promote it. This would be used as an internal resource for services, but also shared externally with our national and international partners. After the film finishes its film festival run I’m very excited about getting on with building it into multiple teaching initiatives at national and international level.
For more information, you can contact Resource Productions at email@example.com. You can also contact Dr Samir Shah at firstname.lastname@example.org