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.
Dementia specialist Admiral Nurses are being asked more and more to support production teams of theatre, film and TV programmes on how best to portray dementia. The profile of dementia in the arts has risen sharply over the last decade; there is a growing number of fictional novels that give us a glimpse into what it might be like to have dementia. We have seen some favourite soap characters develop dementia for instance and there have been film portrayals of people with dementia. I have had the privilege of reading drafts of novels and film scripts and advising actors on the nuances of presenting an accurate yet sensitive portrayal of characters.
The most recent and most rewarding of these opportunities was in advising the lead actor and production crew of the making of the BBC’s new drama ‘Elizabeth is Missing.’ The request to support the production came as a result of Dementia UK’s growing national presence. Having already read ‘Elizabeth is Missing’ [1], this request sparked my interest, even more so when I learnt that the main character to play the person with dementia (Maud) was to be Oscar winning actor and former Labour MP, Glenda Jackson. I arranged to read the script and a meeting with Glenda and the production team was arranged. We discussed how and why Maud might have reacted to certain situations. I was amazed to find out that this film project had been the nugget of an idea and in the making before even the novel was published. From this point on though the team forged ahead and I was then invited to the films premiere in Mayfair on 27th November (an STV Productions, BBC One and BAFTA event).
The film and book have two main thrusts; it is essentially a ‘murder mystery’ but played out through the eyes of a person with dementia. It skilfully weaves us through the altered reality of a person with dementia as they grapple with the present day and the effects of living with dementia with the memories and emotions that call from their past. The character of Maud was probably one of the most honest and accurate portrayals of a person with dementia that I have seen. There was humour laced in at times which gave the character and context authenticity. There was no Hollywood glitz but a sense of ‘everydayness’ and a tangibility to her character that many families affected by dementia will be able to recognise and relate to.
Parts that stood out for me included the close bond that Maud had with her granddaughter. Often we consider the relationship between the person with dementia and their most direct carer, often a spouse or adult child. What we witnessed in this grandmother-granddaughter relationship was an unconditional acceptance and love with an empathy that was very moving. The second most memorable part was when Maud, sat at the bus stop, was approached by her daughter, Helen, but did not recognise her as such and the resulting conversation was one you would have expected her to have had with a stranger. Helen was aware that her mother had failed to recognise her and was very visibly distressed. Indeed, as Admiral Nurses we counsel many family members on this very upsetting loss of recognition. As Helen turned back to face her mother, Maud became immediately aware that it was in fact her daughter and became distraught that she had failed to recognise her. This was an incredibly touching and poignant part of the film.
I feel very proud and yet humbled at the same time to have played a part in this outstanding and sensitive portrayal of what it might be like to live with dementia. ‘Elizabeth is Missing’ is to be screened on BBC One on Sunday 8th December at 9pm. I hope that it is as well received by the viewing public and offers a valuable insight into the reality of a person living with dementia.
1. Healey, E (2014) Elizabeth is Missing. New York: Harper Collins.
(C4, Wednesday 12 and 19th June, 2019, 9pm, 60 mins)
There are fundamental errors that make this programme bad for people with dementia and those who care about them. The idea is that people of working age who have dementia are 'on the scrapheap’, but they could work if only their own lack of confidence, public attitudes and employers’ expectations could be changed. What will change these things is an 'experiment’: set up a restaurant open to the public, put people with dementia to work there, and invite some celebrities to model destigmatising attitudes. It’s been done in Japan, so it will surely be a success in Bristol.
According to the online blurb, among the 14 participants are “Jacqui, a lawyer who has stopped working since her diagnosis, and who relishes the challenge and sense of purpose the project has put back into her life. Another participant, Steven, is glad of the opportunity to show others how able and willing he is to make a positive contribution through work, and to fight the impression that those with dementia are unable to remain valuable members of society.” “What could possibly go wrong?” asks one of the volunteers.
I’ve only watched 1½ episodes of this programme, but I fear that is it likely to fall short in its mission to revolutionise thinking about 'young onset’ dementia. This is because, from the outset, it presents people with dementia in a negative way.
The narrative explains the impairments that they have - that is necessary information. But the viewer also follows them into a mock clinical consultation where they undergo tests for memory problems. Their failures here are immortalised for them to watch again and again.
The distribution of jobs in the restaurant seems to ensure that the least disabled volunteers do the food prep, while those whose problems cause the greatest social difficulties are front of house. I didn’t find it entertaining at all to see Roger and Jacqui trying to perform roles that they were basically unable to do. The programme then focused patronisingly on their small successes as if these were going to change their lives. But no employer would risk taking on Jacqui or Roger in a restaurant setting.
We all want people with dementia to be free to work if they so wish. But, like other disabled people, those with dementia are restricted in what they can do. Employment is made more difficult for them by the progressive nature of dementia. A job therefore needs to be tailored to abilities, and adequate support provided. There was no acknowledgement of this obvious fact.
Complex, language-based jobs quickly become unsustainable in dementia, but a person who is willing to accept less skilled, lower-paid work can be placed. The reason why the programme’s participants are not working may have less to do with societal attitudes than with financial disincentives, if the wages are lower than the social security benefit entitlement.
Patronising and shaming people with dementia is not going to improve their self-esteem in the longer-term. And objectifying people with dementia is all too easy. At one point, the restauranteur asks a volunteer 'What are we going to do with Jacqui?’ when Jacqui is standing in front of him.
Of course people are thrilled by the exhilaration of starting a restaurant and the buzz of making a TV programme. But how will participants feel when they are left with the recorded reminder of their own shocking decline? What will they do with the knowledge that everyone who knows them will have watched their mistakes? Peter sheds tears when asked to write an email – something he stopped doing years ago. This is interpreted as triggering an unhappy memory, but I think they are tears of humiliation.
There are some valuable messages contained in the interviews, such as it’s important to have a purpose in life, and people with dementia are valuable. But actions speak louder than words, and these messages are negated by what the programme shows us: the exploitation of vulnerable people for entertainment. What’s wrong with this programme is that nothing can justify the shaming, objectification and humiliation of volunteers in The Restaurant That Makes Mistakes.
On 1st February 2010 the writer Terry Pratchett, author of what he self-mockingly referred to as ‘inexplicably popular fantasy novels’, gave the 34th Richard Dimbleby Lecture. Somewhat grimly yet playfully titled Shaking Hands with Death, Pratchett’s talk offered a touching and witty insight into living, as a writer, with Alzheimer’s (Pratchett had a rare strain of the disease known as Posterior Cortical Atrophy, which first manifested itself in difficulties accurately touch-typing), and set out a considered case for the right to choose, what he called, 'a good death'. I didn’t catch the original broadcast back in 2010, but read the script of the lecture much later, when it was first published in 2015. It made for wonderful reading.
But it was neither Pratchett’s account of his adjusting to life with PCA, nor his acute philosophical musings on assisted dying (memorable as these both were) that were, for me, the most interesting aspects of his talk. What caught my attention above all else, and has stayed with me since, was, very simply, the reason he gave for agreeing to deliver the lecture in the first place.
Prior to becoming a best-selling novelist, Pratchett was a newspaper reporter and, like many other reporters at that time, was an admirer of the pre-eminent journalist Richard Dimbleby. When Dimbleby died of cancer in 1965, Pratchett was struck by the candidness with which the journalist’s cause of death was announced in the British press. In those days ‘cancer’ was a forbidden word around which obituary writers fearfully tiptoed, preferring instead the vague and euphemistic expression ‘long illness’. The effect which this bold departure from linguistic convention had on public discourse, Pratchett recounted, was astonishing, and thereafter, spurred by this new verbal candour, the war on cancer began in earnest. ‘Before you can kill the monster,’ Pratchett opined, ‘you have to say its name.’
Respecting dementia, I fear that we are, linguistically at least, still stuck in a kind of benighted pre-Dimbleby era. Peruse any recent newspaper obituary, for example, and I suspect you’ll be hard pressed to find any explicit mention of dementia, regardless of the significance of its impact on the life of the deceased. Shortly after the death of Margaret Thatcher in 2013, I read as many obituaries as I could lay my hands on and, as far as I recall, not one of them discussed her having dementia. It was as though any mention of the disease would have been in some way incommensurate with a relevant and proper appraisal (positive or otherwise) of her life and legacy.
Another linguistic parallel between cancer and dementia is the way the two are described metaphorically. But here, as we shall see, dementia is by no means figuratively lagging behind in the 1960s. Metaphor (which literally means a carrying over, a transfer) relates to the process of describing one thing in terms of another: Juliet is the sun; he drowned in a sea of grief; all the world’s a stage; the rain came bulleting down, and so on.
In a marvellous and highly influential book, Metaphors We Live By, George Lakoff and Mark Johnson argue that metaphor is not simply some form of linguistic garnish – a poetic flourish designed to embellish an otherwise unremarkable stretch of discourse. Rather, they claim that metaphor is a means of seeing and making sense of the world, and hence something much more fundamental to human perception and experience than we have previously allowed for. We use metaphors all the time, often without realising that we are doing so. One of the most common kinds of trope depicts life as a journey, a metaphor which is realized in a variety of common expressions: We’ll cross that bridge when we come to it; there are a number of paths open to you; the baby has arrived! In fact, metaphor is so common in everyday language (not just literary discourse) that almost everything we say is in some underlying sense figurative.
Metaphor certainly pervades the language of disease and medicine, particularly figures of speech that relate to war and warfare, although, here again, we might not readily apprehend their metaphorical essence. For example, terms such as heart attack and casualty (as in casualty department), and talk of wiping out disease and treating it aggressively, are so common as to have become almost unnoticeably conventional. Yet construing disease in martial terms, however conventionally, has its benefits. It allies patients and health practitioners against a common ‘enemy’ and can confer a sense of agency in a time of doubt and helplessness (feelings which are understandably common in serious illness).
Military metaphors also feature prominently in the promotional rhetoric of health charities and public health campaigns. One can see why. Such tropes are characteristically vivid and attention-grabbing and hence able to help raise the profile of a particular disease. Any mention of fighting disease, moreover, encodes the prospect of victory. In the case of cancer, with treatments (‘arms’?) becoming increasingly effective, and more and more people surviving (or indeed ‘beating’) the disease, the martial metaphor is, for some people, appropriate and effective: it can inspire genuine hope of personal recovery, the discovery of a cure, and stimulate charitable action.
But any talk of waging war on disease also intimates, of course, the possibility of defeat – of being ‘beaten’ by disease. And this is why conceiving dementia in military terms is, I think, inherently problematic. There is presently no cure for dementia (whatever the variant of this complex, multiform disease) and thus to 'fight' it is a potentially inaccurate and misleading form of representation, and one that has certain (negative) consequences. For how exactly does one fight a disease for which, unlike other serious diseases such as cancer, there is no effective and readily available treatment? Should people with dementia be encouraged to fight? Are they always well-placed to do so? And what is it to speak of people who have, as it were, ‘lost’ to the disease – does this entail construing them as somehow or in some way having failed?
I think that talk around health and illness has suffered for too long from ‘combat metaphor fatigue’. So here’s a rallying cry (a sporting rather than military one, I hasten to add): it is time for new metaphors – time for less aggressive and absolute ways of describing dementia and the experience of living with it. We need tropes that, in the words of the great Tom Kitwood, promote ‘personhood’ and living well with, rather than struggling against, the disease. Changing the way we talk about dementia is not simply a token exercise in social etiquette, a means of being polite and respectful (important though this is). It is more fundamental than that. Updating our tropes affords us new, more enlightened, ways of thinking about and making sense of dementia – possibly shedding, in the process, some of the stigma which attends prevailing formulations of the disease.
Suggestions for further reading
George Lakoff and Mark Johnson (1980) Metaphors We Live By.
Paul Hodgkin (1985) Medicine is war: and other medical metaphors.
One of my current strands of research in Shakespearean performance is how memory works in relation to the use of quotations. Anyone who has seen Hamlet, for instance, might have encountered the bemusing situation where an actor begins ‘To be…’ and half a dozen audience members begin whispering under their breath ‘… or not to be’. Quotations are designed to be remembered and reproduced, and they evoke memories in their listeners that make sense of their use.
Ben Power’s 2009 play A Tender Thing is full of quotations. In fact, it is made up of them. Almost all of the lines are taken from Romeo and Juliet – one of the most widely performed of Shakespeare’s plays – but reorganised to tell a new story, of an elderly couple (also called Romeo and Juliet) who are dealing with Juliet’s mental and physical decline. The play never diagnoses Juliet’s condition, but her experience is characterised by fading memory, distraction, mood swings and unpredictable behaviour.
A Tender Thing is distressing and moving enough in its representation of Juliet’s condition, but Power’s quotation strategy allows him to go further, evoking the experience of confused memory for the audience through misquotation. He assumes that audiences will remember much of Romeo and Juliet, but puts words into the mouths of the ‘wrong’ characters. For the audience that knows Shakespeare’s play, this creates moments of jarring misrecognition that mirror Juliet’s own attempts to remember.
At one of the play’s most powerful moments, Juliet experiences a moment of dislocation in time, and cries out, pulling away from her husband:
Oh, where’s my daughter? I did bid her come,
And now she is with God.
On Lammas Eve at night then was she born.
That was she, marry, I remember it well.
‘Tis since the earthquake a great many years;
And she was wean’d – I never shall forget it –
Of all the days of the year, upon that day.[1]
The first line here was originally spoken by Juliet’s mother, Lady Capulet; the rest by Juliet’s Nurse, whose own child died at the same time as Juliet was born. On one level, we hear an elderly woman forgetting momentarily that she has lost her daughter, which is distressing enough. On another level, as the audience hears these words, they may experience a moment of cognitive dissonance. These words do not ‘belong’ to Juliet, but to other characters.
Juliet’s experience of fading memory is here mimicked by misquotation. If listeners spend even a moment attempting to ‘correct’ their memory and remember whose words these originally were, they are participating in the same process of reaching for a ‘real’ memory that Juliet herself is.
Not all audiences will know Romeo and Juliet well enough to experience this effect. But Power’s misquotations attempt to create empathy for Juliet’s condition by suggesting to an audience what it might be like to find something as familiar as Shakespeare’s lines being not quite right.
[1] Ben Power, A Tender Thing (London: Nick Hern, 2009), p. 30.
This morning, on my way to my Quaker Meeting, I rescued a child. Well, not exactly rescued, but I did respond to a distress call.
I was walking down one of the lovely local leafy lanes (I just love all those ‘l’s!) and from behind a hedge I heard a small voice calling out: ‘Help! Mum! I’m stuck.’ The voice was clearly distressed and the call was repeated with increasing tearfulness. I wondered whether to leave the response to the ‘Mum’ in question, but did not know whether she had heard the cries. So I walked to the gateway of the house and saw a young girl (About 8 years old? I’m not very good with ages) standing outside in her pyjamas, her feet balanced on a ground-floor windowsill with her hands clinging onto the open top window above.
The girl was crying. I asked if she was OK and whether her mother had heard her and was coming. She said that she didn’t think so, then launched into a garbled story muddled by tears about how she had been naughty in some way. It felt wrong to go and lift her down – I was a stranger to her and didn’t want to frighten her further – so I reassured her and suggested that I knock at the door to fetch her mum. The girl agreed readily. When I knocked, the door was opened by her father. I said that I wanted to alert him to his daughter’s situation and his immediate response was: ‘She’s been naughty, but thanks’ as if this explained everything.
At Meeting I found it hard to still myself and stop thinking about what had happened. How had the girl got there? Had she climbed out of the window and not been able to get down, or was she trying to get in? I thought about the punishments we mete out as adults to naughty children. I thought about the book I am reading and how I treat my dad.
The book I am reading is ‘Elizabeth is Missing’ by Emma Healey. The protagonist and narrator is a woman who has memory problems, and whose attempts to solve the mystery of her missing friend, Elizabeth, are hampered by those around her not listening or taking her concerns seriously. When you buy multiple tins of peaches every day at the shop, having forgotten what you went there for and what you bought there yesterday (peaches), people tend to stop taking seriously anything you tell them. So Maud has to somehow go about finding the answers on her own, assisted by her somewhat haphazard note-writing.
I am only 36 pages into the book and already it is painful reading. It is painful because in every description of the reactions of the carers and of Maud’s daughter I see my own reactions to my dad. And it is challenging reading. The sighs (when something is repeated for the hundredth time), the looks, the resigned voice, the lack of attention to what Maud is actually saying – all these things I have done to my dad, and more. It made me feel so sad that I almost couldn’t face reading on.
When someone has memory problems or dementia, it is so easy to slip into treating them like a child – to ditch the respect and attention we would give to the words that other people say, to be impatient. After meeting the distressed child I questioned in my head what reaction is appropriate to ‘naughtiness’, but obviously I did not know the circumstances or background of the situation. Certainly, with my own son, I never managed to handle things very successfully, but I did make the effort to find some sort of equilibrium. With dad, I don’t often give him the respect of switching my brain into gear at all.
So I’ll take this opportunity to say ‘Sorry, dad.’ And: ‘I love you.’ Of course the two are irrevocably intertwined. Without love, I wouldn’t be making the effort (or the mistakes) at all.
