blog

We should not be surprised that the experience of dementia is starting to be portrayed in many of the visual arts; film, TV, novels and theatre.  This is perhaps inevitable given that statistically dementia has a high prevalence and incidence globally with the World Health Organisation stating that more than 5% of the global population over the age of 60 have some form of dementia.  Despite one of the central aims of government policy being to raise the awareness of dementia in the general population, it still seems to be a condition that has a considerable stigma attached to it.

A more recent and evolving role within Dementia UK seems that I have become a media spokesperson fielding requests for interview from journalists seeking my views on dementia and how it is portrayed in the media.  The interest in how dementia might play out in a fictional character seems to be growing and we have seen a growth in the characters plots of novels, film and TV productions.  For me, it has been both interesting and exciting as I have spoken to many journalists and also have met actors and advised directors and producers.  Getting to sit down for lunch and discuss the character of ‘Maud’ with Glenda Jackson who was preparing to play this part in Elizabeth is Missing for Film 4 has to be one of the highlights.  I have supported authors of novels in understanding aspects of dementia as they either use this as a central tenet of their story or in weaving in the experience of dementia into one of the characters or as a sub-plot. 

Representing dementia both accurately and sensitively in film and on TV is an imperative for actors, producers and directors. The medium of film, especially, can have a powerful effect on its audiences.  We have all left a dark cinema auditorium, stepping into the light, often with our minds blown by powerful visual images, evocative music scores and of characters who have brought the story plot to life.  So when the dementia becomes central to the plot, it must be ensured that the lay audience come away with as good an understanding of the lived experience of dementia as possible.  This obviously brings challenges as the mantra for a while has been in ‘living well with dementia’, and indeed this approach has been held central to much of the health and social care dialogue since.  This is not necessarily wrong but many people living with dementia are now acknowledging that to ‘live as well as possible with dementia’ is probably a more realistic stance as many of those diagnosed do not always live well with it all the time.

This is seen in the portrayal of dementia in the recently released film, The Father, a film about a father Anthony, played by Sir Anthony Hopkins, and his daughter Anne, played by Olivia Coleman as they navigate the complexities of their relationship as he lives with dementia, and the difficulties in providing his care. I recall a stage version of The Father being presented in a small theatre in Cambridge some years ago and friends telling me how confusing they found it.  I was asked to review this latest film version and sent a pre-screening link to do so.  After seeing the film for the first time I appreciated our friend’s comments on how they felt confused.  The audience is never quite sure whose reality it is they are experiencing at times.  Are we experiencing the father’s reality; is this his daughter or was the other female his daughter?  Is this the physical layout of the flat or is it the memory assessment clinic; indeed is it his flat or does it belong to his daughter?  The audience is faced with many situations that lead us to question the reality and this may give us an insight into how confusing life can be for people with dementia at times.  It becomes apparent that the flat is indeed his daughter’s and Anthony has been brought to live with her as he was struggling to continue to live alone.  Then we are introduced to the ‘missing family member’; the second daughter who Anthony hails as the preferred daughter and asks several times as to where she is.  Distressing for a family carer when they are seen as not quite as good as a sibling or another family member but in this instance the other daughter died (we think) in an accident, so all the more distressing for Olivia to bear.

Over the years I have seen and commented on many stage and screen productions, and as The Father was progressing, I was thinking, at last.  Here is one that addresses many difficult aspects of dementia care, one that does not shy away from some core issues.  Then, wham!  Just as I am nearing the end and thinking how good this is, I witness a scene that leaves me cold.  Anthony has moved into a care home as Anne can no longer manage his care.  In a moment of confusion and acute distress, Anthony starts to cry and asks for his mummy as he is feeling lost and unsafe.  The nurse character moves to put her arm around him (good response) and says ‘come on baby’ (bad response).  Lost!  In that brief moment my belief in the film is lost and evaporates with Anne’s infantilising response to Anthony’s distress.  As a nurse working with people living with dementia it is important to validate their emotions and make a connection, an understanding.  However, whilst Anthony is asking for his mummy does not mean that it is at all appropriate to treat him as a child.  Anthony is still over 80 years old, not the small, unsafe child he emotionally feels.  Why did she not simply use the soothing words and his name rather than ‘baby’?  Was this deliberate to provoke debate or was it a mistake?  I prefer to think it was the former, that way I can still hold onto the important contribution this film makes to understanding dementia.