Fictional representations of dementia

1. Fictional representations of dementia

2. This presentation reflects upon a teaching approach utilising fictional representations of dementia found within the media. It specifically relates to examples selected from film, television and books, which have been used with healthcare students learning about dementia care. J. Bernlef’s book Out of Mind (first-person narrative outlining the dementia experience through an individual’s fragmenting cognition) Coronation Street / Mike Baldwin (television soap Covering a principal character’s experience of Alzheimer’s disease) The feature film Away from Her(poignant and emotional account of the impact that dementia has upon a partner)

3. The reason for selecting and using fictional resources is : Accessibility Impact Educational potential From a learning perspective factual resources are well complemented through the use of fictional products because of their engaging and impactful qualities. Not only have these products appeal but also great learning value in terms of contextualising the dementia experience and helping learners acknowledge more about the lived and felt experience encountered day to day.

4. Audio-visual products (i.e. film and TV) have their own influences upon audience engagement with regards to music, facial expressions, characterisation, dialogue and expressive tone. Literature, dependent upon narrative style (first or third person), has the ability to take the reader into a person’s internal world experiencing along with the narrator their thoughts and feelings. Selected fictional products therefore can be immensely powerful with regards to encouraging empathic understanding and promoting a contextual appreciation for the dementia experience and a sense of identification with those concerned.

5. TV

6. An important feature of TV soaps is the identification with well-known characters who share our living space on a regular basis. Recent examples include Eastenders (Stacey – bipolar disorder), Hollyoaks (Newt – Schizophrenia) and Coronation Street (Mike Baldwin – Dementia). There is a sense here of engaging with real people (Livingstone 1998) as well as a process of parasocial relations where viewers experience interactions between characters as if they themselves were participants (Horton and Wohl 1956). Mike Baldwin (Coronation Street)

8. The episode of Coronation Street featuring Mike Baldwin’s dementia diagnosis instigated a record number to the Alzheimer’s Society (2006).

9. Books

10. There are many excellent books available conveying elements of a mental health experience including both biographical work and fiction. Book accounts are offered to learners as whole texts, selected chapters and passages. The narrative style can be deliberately chosen because of the expressive ability of the writer or the particular aspect being conveyed. Bernlef’s (1988) first-person style fictional account Out of Mind chronicles the experience of Maarten, an elderly Dutchman with dementia. As his ability to construct sense and meaning from his external world starts to recede, there is a mirroring in the style of prose which becomes progressively more fragmented and distorted. It is written in the spirit of Swift’s (1889) Tale of a Tub, using the ‘language of madness’ or more precisely the ‘language of dementia’.

11. Out of Mind We get an impression very early in the book that something is wrong through Maarten’s sense of perplexity, which gives way gradually to a more deep seated unease. His thoughts relate that his memory has never been good although there is a blossoming sense of denial: ‘Year by year things happen to your body … this is different. More a general feeling of unease than a specific symptom. But no it would be nonsense to think there is something really wrong’ (Bernlef 1988:20).

12. Kellett (1999) reports that carers at times have to lock relatives in the house when doing simple activities. A strong illustration of this experience for those with dementia is provided in Out of Mind: “Hunting for things. If there’s anything I detest that’s it. Where are my keys ? And what imbecile has locked all the doors? Robert follows me like a good dog as I try the kitchen door, the laundry-room door and the outside door. Vera must have double-locked it. how could she be so silly? … On the shelf in the laundry room I find what I am looking for at once. I take a screwdriver and hammer from the wooden toolbox and go to the door. It is easier than I expected. I wedge the screwdriver between the door and the post. After a few hammer blows the door leaps open towards me. Robert slips out immediately and barks, relieved that he too has been freed from his imprisonment.” (Bernlef 1988 : 32) This is a powerful account which highlight something of the inner world of the person with dementia. Such accounts also provide internal clues concerning behaviours which might be labelled “challenging”.

13. Film

14. The medium of film employs a duality of sensory modes with auditory channels (dialogue, music and incidental sounds) and visual channels (imagery, characterisation and background scenery) all serving to communicate aspects to the audience. It can be a powerful and all encompassing experience and as observed by Wedding and Boyd (1999: 1): “With the best films the viewer experiences a sort of dissociative state in which ordinary existence is temporarily suspended.” What is key here is the sense of connection and engagement with others’ experiences as we enter the world presented before us. It places the viewer in a position of feeling and helps develop empathic and emotive responses. Film is an extremely potent and influential medium with certain powerful or iconic scenes having a lasting impact upon the viewer. It reflects the Gestalt process of figure and ground whereby certain elements are perceived as standing out and being differentiated from the background.

15. Away from Her This film is based upon the bear came over the mountain – a fictional short story by Alice Munro. It features a man struggling to cope with the institutionalisation of his wife because of Alzheimer's disease. This is further complicated when she transfers her affections to another man, Aubrey, who is also a patient at the nursing home.

17. The media examples here are only a small sample of those shared with learners which include both factual and fictional representations. It is evident from feedback and discussion that these products have a powerful emotional resonance and help to engage learners with something of the inner world of the dementia experience. Whilst each example is unique and cannot necessarily be generalised it does help promote more of a questioning and thoughtful approach concerning the lived dementia experience with which to take back to practice. Not all fictional media products are good examples although if chosen carefully offer a rich, accessible and creative resource with which to facilitate learning about dementia. Conclusion