Living with dementia magazine April 2012

Showing dementia through film

Filmmaking can be a useful way for people with dementia to express themselves, raise awareness and share their experiences. Danny Ratnaike finds out more about how it is being used to tell people's stories

Innovations in Dementia involves people with dementia in making films that portray their creativity and strengths, as well as sharing advice on living well with dementia.

Steve Milton, one of the organisation's three directors, says,

'I'm very enthusiastic about using video and encouraging others to use it. It enables people with dementia to have a say in their own time and on their own terms.'

Innovations in Dementia is a community interest company that has strong links to Alzheimer's Society, and Steve ran the National Dementia Helpline for six years from its setup in 1996.

The Society has greatly increased the number of its videos available online and they now form an extensive resource.

Rebecca Machin, the Society's Audio Visual Producer, says,

'Video is a great way of sharing real life stories. Some things can be difficult to get across through the written word, but in film you can really see what the issues are.'

Living well

Innovations in Dementia began making films with people who have dementia in 2008. Steve says,

'People were turning to the internet for information, often going to YouTube. But at the time if you searched for dementia on YouTube a lot of videos were unhelpful or downright offensive. What was good was aimed at carers, and there was nothing that helped people to think about the potential to live well with a diagnosis of dementia.'

Steve adds,

'Our first stumbling block was that people said they'd love to take part in making films, but that they were bored with dementia - one man told us that it was the least interesting thing about him. So we decided to make films about what people were interested in and what motivated them.

'For people watching the films who have been newly diagnosed, what better way to show them what living well with dementia looks like?'

Having a say

Three of Innovations in Dementia's films about individuals with dementia were made with a sculptor and educator, someone who developed a unique way of illustrating medieval carvings seven years after being diagnosed, and a former librarian. Another video involved members of a walking group from Swindon's Forget Me Not Centre.

Steve says,

'We have heard from many people with a diagnosis who have been inspired by the films. They have also been widely used in training, especially with those whose experiences are generally with people living with the later stages of dementia.

'For a lot of people with dementia, getting up and having a say at a particular time can be daunting. With video they can do it when they feel able and comfortable.

'Getting help from a professional filmmaker is great, but you can still do a lot without professional involvement with pretty basic hardware and some basic training or guidance.'

One film with an Alzheimer's Society Empowerment Group in West Berkshire was made with a very low budget and no professional filmmakers.

He adds,

'People with dementia were highly involved in every part of this process, including editing, and the result gets its message across really well.'

Progression and consent

Steve says,

'Progression of dementia raises issues for filming, including that of consent. It's imperative that people have to be able to provide meaningful consent to appear on film. If people struggle to communicate it can be hard to recognise when they've understood something, but this can be helped by taking time and a dementia friendly approach.

'Everyone has a right to withdraw right up to when we upload the film to the internet. In the West Berkshire video, one lady has her face pixelated because she said the day before launch that she wanted to withdraw. Once launched, it's in the public domain and we need to make sure that people understand this as well.'

Relationships

The organisation maintains relationships with people involved in its films. For example, members of the Forget Me Not group in Swindon have continued to participate in consultation work.

Steve says,

'We get approached by many organisations seeking the views of people with dementia and Forget Me Not are regular contributors.

'For a conference in Trent a couple of years ago that we were involved with, members of the Swindon group even wrote and performed a song about dementia to the tune of Tom Jones' Delilah. 

'It's only unfortunate that we don't have this on film because the battery ran out - now that was a big lesson!'

To see Innovations in Dementia's films and its guide to filming titled Telling our stories, visit www.innovationsindementia.org.uk/films

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