Everyone’s experience of dementia is unique to them. Meet a person with dementia, they say, and you’ve just met that one person with the condition. So how can SCIE’s new film, Dementia from the Inside, purport to portray the experience of dementia and to provide carers with insights into what it is like to have the condition?
Forget-me-not is a group of people living with dementia who meet regularly in Swindon. The group agreed to work with SCIE to identify common experiences and reactions that many people with dementia are likely to have. On the basis of this information, the filmmaker devised a ‘story board’, visual representations of what had been said. A few weeks later, we showed this to the group for their feedback. One woman with dementia said watching the film clips made her shiver because it was felt just like she had experienced it before.
The aim is for Dementia from the Inside to show, from a woman with dementia’s perspective, what it is like to have her dementia. The video takes place during one day. It portrays periods of lucidity such as when she recognises a friend in a photograph followed swiftly by a confused episode when she cannot remember the friend’s name. The woman does not know who the ‘man’ in her room is when he hands her a cup of tea. We later understand he is the woman’s partner or husband.
The video is voiced by the woman and we can hear her frustration and sometimes her anxiety when the world becomes unpredictable. We hear her anger when she drops a cereal spoon in her lap and learn that she used to be a chef.
It can be disturbing for relatives and carers of people with dementia if they don’t understand what is happening. The video may help to explain why a person with dementia may become frustrated with themselves or those who struggle to understand them. It also shows how people with dementia may lose the capacity to articulate or communicate their anxieties, fears or frustrations.
courtesy: SCIE’s Pamela Holmes, practice development manager
