For people with dementia, the confusion of memory loss can be isolating, painful and deeply dehumanising. Which is why the work of the UK charity My Life Films is proving to be so life-affirming. David Annand looks at how the bespoke celluloid life stories it makes are bringing hope, comfort and solace to those with dementia and their loved ones
Dementia is the “disease of the century” – 850,000 people in the UK alone are currently living with the condition, a figure that’s set to rise to over one million by 2025 and two million by 2051, by which point it will be an epidemic that will touch the lives of almost everyone in the country. At present, there is no cure and its effects are often devastating for both those who experience it and those who love them. So full credit to filmmakers Jörg and Carolin-Marie Roth who have created My Life Films in an attempt to at least provide some comfort for those living with the disease.
It all started in 2014 when the husband-and-wife team heard an item on the radio explaining that people with dementia don't watch television because the storylines are too complex and fast moving. It got them thinking about how people with dementia entertain themselves and as they began to investigate, they were shocked to discover how little there was for them. Inspired by a film they had made for Jörg’s parents (neither of whom have dementia) to celebrate their 60th birthdays, they hit upon the idea of creating bespoke films for those with dementia which told the story of their own lives. Calling upon established ideas from reminiscence therapy and music therapy, the films would be a way of maintaining a connection with the past for those with dementia.
At the time Jörg was volunteering with a dementia group in south-east London, which is where he met Paddy, who became the first subject of one of their films. “It was amazing to see the impact it had,” he says. “People get isolated because they are embarrassed by what they might be doing. And their partners feel embarrassed that their husband or wife is talking gibberish.” The upshot of this is that people with dementia can can get locked away. “But the films help to break that taboo because they give the person with dementia and their family something they can be proud of. They define the person by the great life they have had and not by the illness.”
It doesn’t matter if the subject of the film’s life mostly took place in the days before ubiquitous smartphone video footage. “It's almost like your Facebook timeline. Still images, one after another, in chronological order set to music. Which is a storyline that those with dementia can follow because it's slow moving and the image always relates to the next one.”
The films are so powerful because they trigger recollections about the distant past, which are often more readily available to people with dementia than short-term memories. And crucially they prompt visits and start conversations, breaking down isolation.
But it’s not just friends and family who benefit. As well as the slow-moving long film for reminiscing, My Life Films also makes short edits created especially for the ever-changing roll call of care workers, the great majority of whom will almost always know nothing about the person with dementia’s life before the illness. These short films are narrated to give a full picture of the person, the milestones of their life, nicknames and hobbies, enabling the caregivers to engage the person with dementia in meaningful conversation. “One of the big things that people with dementia struggle with is that they become an unknown. And these films give them their identity.”
Which is one of the reasons they try their hardest to get the individual involved. “We try to get in as early as possible because when you get diagnosed with dementia you are still a fully capable person. We're trying to go in at that stage so that the person with dementia can determine what goes into the film. This is what’s unique about our product: everything else out there for people with dementia is very passive, but in this case they're actively involved. They are telling us their life story. They tell us what great music they like. They're not only the stars but also the director and executive producer of the film.”
In the last six years they’ve made more than 200 films and were justly thrilled that the British care industry voted them Outstanding Dementia Care Product of the Year 2016. The results of an NHS trial into the films are about to published and early indications are that care workers are finding them to be a hugely important tool in calming agitated patients. For some people the effect of the films has been so profound that their care teams found they needed to be subscribed fewer antidepressants.
The films can profoundly affect the relatives of people with dementia. Jörg remembers a particularly affecting encounter with Paddy’s wife. “She was saying this film was really useful for her as well because it showed her again why she loves Paddy so much. Looking after your husband who has dementia is physically and mentally exhausting. And to sit down for half an hour and see their joint life on the big screen gave her strength and reminded her why she loved him.”
The charity doesn’t charge anything to make the films and they will always make one if there’s money in their account (indeed they also offer a film making service for families who can afford to pay for the films). To this end they rely on donations – some from grant-giving bodies but also from individuals. And given the current forecasts it seems unlikely that demand is going to dry up any time soon.
But for relatively little money, it can be a genuinely life-altering intervention. And one which is often, sadly, of ongoing benefit. “Some people use them every day because they forget – and so it's a great experience, every day.”