Reading into Dementia

empathy through fiction

‘I’m ridiculous.’ Protectively clasping a diary, Gerda shrugs in defeat, her smile wavering. ‘I’m getting more and more ridiculous.’

While her husband and I talk, Gerda opens the diary and runs her finger down the page to find my name written into Thursday afternoon. She nods, satisfied, and closes the diary to give me her full attention. A moment later she opens it again, runs her finger down the page, and nods.

Dementia is unkind. Taken from the Latin, de means ‘without’ and ment is from the masculine for ‘mind’; dementia robs a person of the thing we associate most with our very being: our mental capacity. Dementia is not a single disease, but a range of illnesses affecting the brain and its function, causing difficulty with memory, understanding, and reasoning. Medication only makes dementia waver in its determined march of decline; it refuses to halt or retreat.

Alzheimer’s disease is by far the most common form of dementia, and involves abnormal plaques and tangles forming in the brain. The cause is unknown, and it’s now understood that the brain can begin to be affected up to two decades before a person might experience any symptoms. Other forms of dementia include vascular dementia, the onset of which can be sudden or gradual and is caused by cerebrovascular disease such as stroke; dementia with Lewy bodies, which progresses more rapidly than Alzheimer’s and involves abnormal proteins forming in brain cells; and frontotemporal dementia, where damage starts in the front of the brain, affecting personality and behaviour. Dementia can also be caused as part of other illnesses, such as Parkinson’s or Huntington’s diseases, or be related to drugs, alcohol, or head injury.

So much is still unknown about Alzheimer’s disease, adding to our fear of the condition. Age is the main risk factor, with onset of dementia before the age of sixty-five suggesting a genetic cause, while other established risk factors include family history, Down syndrome, and a common genetic polymorphism (the apolipoprotein E or ApoE E4 gene). A sedentary lifestyle, obesity, heart disease, high cholesterol, and hypertension all increase the risk of Alzheimer’s disease, while recent research suggests Azheimer’s might be directly linked to type 2 diabetes, which has been shown to cause an increased level of tangles in the brain, leading to cognitive decline. Head injury and a history of depression are also suggested risk factors for developing Alzheimer’s. A lot of research is being done into the ways we can protect ourselves against Alzheimer’s disease, and while there are no definitive answers, better cardiovascular health, staying social, engaging our brains throughout our middle years, and clocking up higher levels of education are thought to make one less likely to get dementia. Less conclusive evidence suggests that omega-4 fatty acids, as well as the use of some medications (such as cholesterol-lowering drugs, non-steroidal anti-inflammatories, and aspirin), may act as protection.

Each week there are more than 1,800 new cases of dementia in Australia: approximately one person every six minutes. Affecting close to one in ten people over sixty-five, it is our second-leading cause of death. The rhetoric is frightening, but while fear-mongering might cajole governments into investing in research and encourage the public to be generous with their donations, how does it affect the people living with this disease, and our treatment of them?

Some say the only blessing of dementia is that a person’s awareness of its effect slowly fades with the disease’s progress; it is the surrounding family and friends who are left to contemplate what is lost. But what is often forgotten is that one can live with dementia for a long time. A person can still experience the emotions they always have — they can find meaning in the present, the past, and the future. Dementia irrevocably changes a person, but the person is still there.

Too often, a dementia diagnosis is unintentionally used as a way to rob a person of their identity. In the name of safety, ease, and efficiency, aged-care staff and families often assume that a person with dementia is unable to make their own decisions and so relieve them of their agency. Decisions about when to eat, what to wear, and how to act are taken out of their hands when a person starts to behave in a manner deemed inappropriate. The extreme of this is seen in the effort to curb what are known as ‘difficult to manage’ behaviours — things such as agitation, wandering, swearing, and delusions.

It is estimated that up to 80 per cent of those with dementia are on psychotropic medications to counter their ‘challenging’ behaviour. These medications have serious side effects, and studies show they often don’t even work. But the most disturbing aspect is that these ‘behaviours’ are often the person’s way of communicating their fear and discomfort. For example, many people with advanced dementia become aggressive when someone tries to shower them and consequently are given sedating medication, which stops the aggression by subduing their personality and natural responses. As Allen Power, a geriatrician and an advocate for empowering people with dementia, explains, ‘If a stranger started taking your clothes off, you’d probably shout at them too.’

After receiving a dementia diagnosis, many people are subjected to a social death well before a biological one. As they become less able to communicate and take part in the broader world, they are shut off from society. In this way, dementia draws a person into themselves; no matter the level of support they may have, it is a journey that demands, at some point, to be walked alone. There is research to suggest that older people who are already lonely are up to twice as likely to get Alzheimer’s, though this link is tentative. What is certain is that the nature of dementia compounds loneliness: some people with the condition forget that people have visited them, or gently withdraw from social situations that are too difficult to navigate. This circumstance can be even more discordant for people who have come to Australia from a non–English speaking background (a significant number, considering that a third of the current generations of older people were born overseas). As dementia takes hold, many people revert to their mother tongue, for those patterns of speech laid down early are the last to go. Unfortunately, this can make communication in an English-speaking country more difficult. While many aged-care staff also come from non–English speaking backgrounds, by virtue of the constantly changing nature of migration, rarely do they speak the same language as the older people in their care.

Part of the predicament is that everyone’s experience of dementia is different, and as the disease progresses it becomes increasingly difficult for the person concerned to communicate what they’re going through. The family and carers around them try their hardest, but are often left perplexed and frustrated as it becomes more difficult to anticipate how their loved one might be on any given day. Dementia is not a simple forgetting of where you put the car keys — it’s holding them in your hand and not understanding what they are. It is memory loss often coupled with a confusion of time and place, and the result can be individuals gripped by feelings of persecution and fear. I’ve spoken with many people who are at different stages of the disease, and their experiences are wildly different. Some can no longer remember names and faces of people they know well; others are frustrated that television becomes unintelligible, as it’s impossible to hold all the information and storylines in their mind. Some people forget to eat, while others panic or become aggressive to people they love. Sometimes I take a sip of my tea mid-conversation and find we’re back at the beginning: the exact same questions, the very same genuine interest and engaged delight in my answers. It’s bewildering to repeat a conversation within moments of it ending, as though we are actors stuck in a relentless cycle of rehearsal. I see how easily this could turn into irritation in the space of a day — questions asked over and over, my answers not providing any closure. Yet in these instances I have to remind myself that the frustration is all mine — for the person with dementia, the conversation is as fresh as it was the first time.

It is, of course, much more difficult for family members to accept the changes that dementia brings to their parent or partner than it is for the care staff (or researchers and writers) who encounter these people in a brief moment of their lives. The slow erosion of the person known and loved for a lifetime is unmerciful. But those a step away — aged-care staff, neighbours, colleagues; all of us in some form — must make an effort to understand what the person with dementia is going through. To improve the care and experience of people with dementia, we must move from sympathy to empathy, and the only way to do that is to grow our understanding.

Pity leaves us stumped; feelings of sorrow at another’s misfortune often relieve us of the responsibility to do anything about their situation. Empathy, however, asks us to act — to understand what it is to be another, and to change our behaviour in response. In regard to a person with dementia, this may mean changing our expectations and approach: agreeing with talk of long-dead people as if they were still present rather than offering up a correction, or allowing someone the freedom to wander rather than encouraging them to sit down. But this would all be much easier if we knew why a person behaves as they do, and a person with dementia is not necessarily in a position to tell.

‘Hurry up and jump in the shower, Mum. We’re in a rush.’

Myrtle looked at her hands as though surprised to see them there on the ends of her arms. She sighed and stepped forward. The black-and-white walls of the hallway rippled and bulged in a grotesque Beetlejuice fashion, billowing as she walked past. At the end of the corridor she paused at a door, hand outstretched.

‘Get yourself in the shower, Mum. We haven’t got all day. Yell out if you need help.’

‘Oh dear.’ Myrtle’s voice was faint. She took a deep breath and fumbled with the door handle. Everything was blurry; she couldn’t quite make out the edges of things. She was about to step through the doorway when she saw that it wasn’t a room the door opened to, but a cupboard. Where was she going?

She looked down at her feet, but the bugs were back, crawling about the carpet. Her house never used to be this dirty — she always kept it well. She tried another door and it swung open, the roar of the exhaust fan leaping out at her. The bathroom. She squinted in the glare of the light bouncing off the tiles and took a tiny step forward. But there was a mammoth gaping hole in front of her.

‘Mum! You’re not even undressed yet! Don’t you remember we have to go to your doctor’s appointment?’

Be brave, Myrtle told herself, and stepped forward, waiting for the fall. Luckily the floor rose up to meet her, like a flying carpet, and she shuffled onward. It was the bathroom, she was sure of it. But she couldn’t remember what she was supposed to do there. She walked towards a white blob. What was it? And then she saw her mother’s face, staring at her in the mirror. Was she supposed to be taking her mother somewhere?

Myrtle’s breath was coming quickly. Her teeth needed to be brushed — that’s what she must do. But when she took up the toothbrush, it didn’t feel right. It was something else she was holding in her hand; she couldn’t put that in her mouth. She dropped the razor in the sink and turned towards the shower. It was grimy inside, the small space dark. There were stains on the walls and a rusted shower rose directly above. Her heart started beating rapidly. It reminded her of something, a terrible memory — no, not a memory. A terrible thing was happening. Her hand reached for the tap, and when she turned it, hot water pummelled at her body, the pipes squealed, and the water roared. It was too much, it was too noisy. She just wanted it to stop.

Thankfully the lights came on and Myrtle’s house was replaced with the Alzheimer’s Australia logo projected across the wall: Understand Alzheimer’s, Educate Australia. Myrtle removed her dressing gown, beaming at the group of us sitting in a semicircle, clipboards in hand.

‘So I’m Wendy again, not Myrtle,’ said the workshop presenter. ‘Let’s do a quick whip-around and I want everyone to give me one word that describes how they felt watching Myrtle negotiate her morning shower.’

Frightened. Worried. Tense. Distressed. Frustrated. Sad.

‘Stressed,’ I said, offering up a word in tune with everybody else’s. I was taking part in Alzheimer’s Australia’s Virtual Dementia Experience, a workshop designed to encourage people to think and feel from the perspective of a person with dementia. The session was based around a computer simulation projected on the wall that the facilitator could navigate with her hands, directing Myrtle’s haphazard stumbling through her house on the way to her morning shower, her spectacles forgotten and her daughter an irate, disembodied voice. The participants in the group all worked with people with dementia — residential-care managers and coordinators, personal care attendants, pastoral-care workers, a lifestyle facilitator — but despite this, each of us were surprised by at least one thing in the virtual scenario, something we hadn’t considered before: the rippling walls, the bugs on the floors, the annoyance in the daughter’s voice, the way the toilet wasn’t apparent at first but just seemed to pop up out of nowhere.

‘Everything in that virtual scenario is taken from the experience of a person with dementia,’ said Wendy. ‘Someone with Lewy body dementia might experience illusions or hallucinations where the walls bulge and it looks like bugs are crawling on all the surfaces. Somebody else might see a bathmat on the floor and think it’s a sinkhole, and you’re asking them to step into it.’

I hadn’t been taking things too far when I saw the shower morph into something that looked suspiciously like a concentration-camp gas chamber. Wendy informed us that in the course of their research they had spoken to a Jewish woman with dementia who had become terrified of showering, unsure where she was and why she had been stripped of her clothes. Was it in poor taste, I wondered, to include this personal scenario in a generalised education tool? But perhaps it is the only way of making us understand the terrible dislocation of dementia, the horror one might feel when placed in what has become a disturbingly unfamiliar situation.

We ran through the scenario again and things were improved. The daughter was composed. She gave her mother choices, offering to accompany her to the bathroom, reminding her to put her glasses on. The projection slipped into focus and there were pictorial signs on the doors: Bathroom. Storage. The toothbrush was labelled, so Myrtle didn’t reach for the razor. The white wall and floor tiles had been replaced with blue ones so that the white toilet and basin contrasted with their surroundings, rather than camouflaging into the background. There wasn’t as much noise because the daughter had turned off the television, the radio, the vacuum cleaner.

‘What was different this time around?’ Wendy asked the room, and we all agreed on how a sense of calm blanketed the scene. Most of the change had come from the daughter — when she restrained from getting frustrated at her mother and wasn’t annoyed by having to repeat herself over and over, Myrtle felt more relaxed. It was easy behaviour to model, but difficult to put into practice by even the most patient of daughters.

While the virtual dementia experience was an admirable tool in Alzheimer’s Australia’s ongoing efforts to educate the community about dementia, the technology was somewhat clunky, the movement detectors not always picking up the presenter’s hands. Most problematically, we workshop participants were all put in the role of the observer, a place from which every writer knows it is far too easy to be critical; far enough away to think this will never happen to me.

The Mid Yorkshire Hospitals NHS Trust in the United Kingdom recently collaborated with a German design company to create an ageing suit for younger people to wear to simulate age-related impairments. With a weighted vest similar to a flak jacket, heavy-duty earmuffs, and a variety of goggles to simulate vision impairments, the wearer ends up looking more equipped to an afternoon on the firing range than to a nursing home. There’s something a little crass about the overall ensemble, and some critics have dismissed the concept as patronising, and damaging in the way it risks promoting negative stereotypes of ageing. But the project’s intention, and results reported by those who have tried wearing the suit, cannot be ignored. It is one thing to be told how another person feels, but quite another to come close to feeling the same way. Yet there is a much simpler way to achieve this than gaming technology and ageing suits — one could read a novel.

It’s no secret that fiction is a shortcut to empathy, a direct line into another’s mind: their way of thinking, perception, motivations, desires. In understanding those who are not ourselves, we develop a more nuanced, and possibly empathic, view of humanity. How impossible it is to know another person, yet in the pages of a book we — the reader and the writer — admirably and repeatedly try. While nonfiction, particularly memoir, is also a powerful tool in this regard, it cannot reach as far as the imagination of fiction. And imagination is needed when the mind’s pathways begin to break down, language eludes, and it becomes near impossible to communicate one’s own experience.

Dementia has found its way into fiction over the years, from one of Alice Munro’s best-known stories, ‘The Bear Came Over the Mountain’, to the novels Animal Dreams by Barbara Kingsolver, The Corrections by Jonathan Franzen, and We Are Not Ourselves by Matthew Thomas. While these stories do dip into the experience of the person with dementia, their focus is largely on the supporting cast: the family who have no choice but to watch and attempt to assuage the impact of the illness.

Recently, some authors have put the person with dementia clearly at the centre of their tales, even using the condition as a guide to structure a narrative, discovering the happy coincidence that dementia ably lends itself to that great trope of fiction: mystery. Dementia makes life a puzzle, full of shifting meaning and mysterious objects and words. Recognising this, authors such as Emma Healey (Elizabeth is Missing), Fiona McFarlane (The Night Guest), Samantha Harvey (The Wilderness), and Lisa Genova (Still Alice) are among others who have written from the perspective of someone with dementia. These novels are built on respect and research, and often the personal experience of the author having someone close to them diagnosed with dementia. They give a more powerful understanding of the disease than any other tool available as they describe the anger, frustration, and bewilderment, and show how these emotions may result in the ‘difficult’ behaviours for which many people with dementia are medicated.

In Emma Healey’s novel, Maud is sure something has happened to her friend Elizabeth. Not only is Elizabeth never home, but Maud keeps finding notes she has penned to herself that confirm her suspicions: Elizabeth is missing. The true mystery turns out to be the disappearance of Maud’s sister Sukey in the 1940s, giving the book its narrative momentum, but the insight offered as Maud busies herself each day is invaluable. Whether Maud is eating another sandwich, having just assured herself and her daughter she’s not hungry, or forgetting what it was she went to the corner shop for, the reader understands the world and its confusions from Maud’s point of view. We can appreciate her daughter’s frustration, just as we understand Maud’s bewilderment and annoyance at it.

Despite the clever plotting and slow uncovering of clues and memories relating to Sukey’s disappearance, it is the characterisation of Maud in the present day that is most affecting, and lends the novel its emotional heart. Maud is extremely observant and diligent in her search for Elizabeth — she knows she is likely to forget things, but she compensates with her note-taking and keen perception. Heartbreakingly, she is aware of how difficult she can be for those around her: when she asks a question of her daughter Helen, and Helen sighs before replying, Maud knows she must have asked before, despite having no memory of it. It is an empathic rendering of dementia rather than a patronising one, and the reader is the richer for it.

Samantha Harvey gives the reader the ultimate unreliable narrator in The Wilderness’s protagonist Jake, a recently retired architect who has just been diagnosed with Alzheimer’s disease. At first the reader notices a missing word here or there — objects that Jake cannot quite place, or a lack of focus on the present. As the novel continues, the reader discovers that Jake’s memories cannot be trusted. But is this the consequence of a deteriorating mind, or simply the way we all edit our memories upon reflection, shaping them to fit the idea we hold of ourselves?

Many novels draw their narrative momentum from the character’s desire — desire for something more, or for something different — and the end of the book comes when that desire has been sated, proved impossible, or shifted to another want. In Jake’s case, as his past and future contract, he discovers that perhaps he always had what he was looking for — but that now it, along with his mind, will be taken away. In this way, Jake’s journey becomes one of learning to live in the present; his greatest fear is that this present will be empty and ongoing.

Like Emma Healey, in The Night Guest Fiona McFarlane uses the disintegration of the mind as a way of coating her tale in mystery. Elderly Ruth knows she’s become a worry for her sons since her husband died, so she welcomes Frida, the woman sent by the council to help. But Frida’s arrival also signals that of the ominous tiger of the title, and Ruth’s growing doubts about her world and what is happening to her are transferred effortlessly to the reader. We yearn for Ruth to realise that Frida is some kind of con artist, even as we hope she never discovers this truth; we delight in Ruth taking her husband’s monster of a car for a spin, asserting her independence, even as we despair of the consequences.

In Ruth, McFarlane shows the depths of anxiety that can come with dementia and the different ways a person tries to maintain control and dignity. Ruth enacts small rituals in the taking of her daily pills; she always begins a flight of stairs with her left foot and ends on her right; and she bargains with the unruly universe — if her dinner was ready in time for the six o’clock news, her sons would be home for Christmas.

As Ruth becomes more confused and unsure of herself, the tiger makes itself at home, becoming a source of comfort to Ruth in the face of the indifference that surrounds her. The fact that McFarlane has successfully transplanted the reader into the depths of Ruth’s disobedient mind is confirmed by the lacklustre final chapter, an epilogue told in an impersonal, omniscient manner that ties up loose ends at the expense of the intimate emotion of Ruth’s voice.

The recent film adaptation of Lisa Genova’s book, Still Alice, serves to highlight the strength of fiction and the superiority of the novel form in conveying another’s experience. The story concerns Alice, a Harvard professor, who receives a diagnosis of Alzheimer’s at only fifty years of age. As both a film and a novel, Still Alice is a captivating and delicate study of dementia, but the novel alone lets us know what the experience is really like for Alice. As movie viewers, we become observers to Alice’s plight. The close-ups of her face, the anxious glances of family members — we are on the outside, looking in. But as readers of the novel, we are within Alice’s mind — her confusion and frustration becomes ours, and as her vocabulary simplifies, we mourn the articulateness of her voice even as we share her small triumphs over the adversities she faces. Genova doesn’t possess the literary flair of Harvey, Healey, or McFarlane, and she conveys Alice’s situation in a straightforward prose style that would no doubt appeal to her protagonist. That Alice is so assertive and confident in her intellect is what gives this novel its emotional power: she understands what she is losing even as she is deprived of the language to describe it.

The difference in empathic experience is most apparent in the final scene of the book and the film, when Alice’s daughter Lydia reads aloud a monologue from a play she is rehearsing. In the film, we listen intently to the words being read; we seek in them some kind of closure or import — something that will make sense of the tragedy and bring relief. But in the book, we have to let go — because when Lydia reads, Alice can no longer make sense of the words, so they don’t appear on the page for the reader. Instead Alice watches her daughter’s face, her eyes, her shoulders, her body, not even sure the young woman is her daughter. Alice squeezes the baby in her lap and kisses his head, letting the words wash over her and correctly sensing that the monologue is a communication of love.

To read a novel is to reach into another’s mind, and we need to remember that those with dementia are not simply vessels of loss — they have profound insights into the human experience, and minds well worth exploring. As we live longer, we are ever more likely to encounter dementia in ourselves or in others. It’s an experience that cannot and should not be pushed aside; to do so only makes it more unknown and terrifying for all involved. Each person’s life course will be different, and more than any other fate, dementia shows how little choice we have in directing our own story. By demonstrating that a person’s life does not stop with a diagnosis, these novels enrich readers’ lives, inviting understanding of a profound life experience in a way that even the best scientific language cannot provide.